I have a son with Down syndrome, but I still believe in your right to choose.

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I’m not going to be adding a cute photo of River to this. It isn’t an article about proving to the world how amazing he is or how happy he makes me, it isn’t an article about how he is worthy of his life and it certainly isn’t a ‘look what you’re missing out on’ piece. Actually, this isn’t really about him at all. I also didn’t write this to try and make anyone feel guilty, angry, sad or regretful. I wrote it because I agree with a woman’s rights to choice. I believed in it before I had River and I still believe in it now. Women have fought long and hard for their voices, and having a son who happens to have Down syndrome does not make those voices any less important to me.

Here is Tanzania, just yesterday my sister in law returned home from work and found her 7 year old son sat on their doorstop crying because he could wake his Nanny up, she is 19 years old. When Victoria went into her home she found her led on the bed unconscious and rushed her to hospital. It turns out she found out she was pregnant, was so scared and alone, that she drank poison. She drank poison! Imagine how she was feeling to do that. As abortion is illegal here and so is suicide, she is now in hospital and handcuffed to her bed. We don’t even know if she is going to survive, but an hour after getting to the hospital the police arrested her and there is nothing we can d about it. Can you imagine that happening in the Uk? It could go that way if we take away a woman’s rights.

Last week a Mumsnet thread was brought to my attention, and it is full of statements from women who have had a prenatal diagnosis of Down syndrome and are planning to, or have already had a termination. I can’t deny that it’s a really hard read for anyone who has a child with a disability, the Down syndrome community are angry because they feel that their children are being attacked. It’s hard to see past that anger when you are so emotionally involved.

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I want people to see that Down syndrome is not the end of the world

I don’t want women to keep their babies because they are forced to. I don’t want babies like my son to be seen as a punishment, to be born into families who don’t want them and even put into institutions. It could set us back years! Gone are the days when people with Down syndrome are shut away and I would never want to go back to that.

I want women to keep their babies because they want to. I desperately want them to keep their babies, but I want them to want to keep their babies. I want them to know that having a child born with Down syndrome is a blessing, that their babies can have a good life, have something to offer the world and will bring pure joy to their family life. I want women to want their babies, to love their babies and to recognize their worth. When a woman is given a prenatal diagnosis I want them to think –

‘This isn’t what I planned but I’ve got this. It may be a different journey but it’s a journey I want to go on”.

I want women to feel, supported, strong and not judged. I want women to know that their babies will be incredible, and that their life will become incredible because they chose life for their child. I want women to remember River and not feel sad or scared, but excited and lucky. I want them to know that there are people there to support them if they need advice, to chat or to just cry. I want women to know that there are women who already have children with Down syndrome who they can ask questions and not feel judged. I want them to know that we are there to listen, encourage, support, educate and be honest, and not to tell them that they are awful people if they don’t want a child like ours. I want parents with children who have Down syndrome to forget about being angry and concentrate on the importance of educating.

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So although that thread on Mumsnet was hard for me to read, it didn’t make me angry at those women. To be honest, it just made me feel sad. In the majority of cases you can feel the pain that these women are facing and how difficult it is for them. These were not accidental pregnancy’s, they were very much wanted right up until the point of diagnosis. Its heart breaking that society’s view of Down syndrome has caused women to feel that the perfect baby they had yearned for, suddenly isn’t so perfect at all.

It’s societies perceptions that needs to be changed, not the law

I can’t blame these families for feeling scared or upset. The picture that society has created about Down syndrome is horrendous. It’s outdated, ill informed and untrue, but never the less that’s how people view our children. Even those of us who now have children with Ds were uneducated once, and my vision of Down syndrome back then was nothing like the reality that I know now. Today people with Down syndrome are proving exactly what they are capable of, but reality is that when people think of them, those old fashioned images are what they see. It’s a hard image for those of us who know different to change.

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I don’t have the right to judge, I never had to face that decision

I didn’t find out that River had Down syndrome until after he was already here. I never had to go through the fear, uncertainty and confusion, or decide whether my son had a right to be born or not. I am thankful for that every single day and the fact that I never had to go through that pain. It is also why I will never judge anyone for their choices, because it’s a choice I never had to make. I’m also not special enough or perfect enough to pass judgement on anyone else, and I won’t do it. I also believe strongly that we could quite easily have been on the same team. If those women writing those comments had a diagnosis after birth I have no doubt that after the initial fear and upset, they would be right by my side adoring their child and fighting to change the world for them.

 

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There are struggles, but for me they are far outweighed by the positives

Having a child with Down syndrome is not easy, and that is not something that should be overlooked. Not everybody wants or can take that on. River will be dependent on me in some way for his whole life, there are many things that I won’t see him do, we will face struggles along the way and I have very real worries about what will happen to him when I am no longer here.

BUT whether people to believe me or not, he is the best thing that has ever happened to me.

 

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Choice means choice, the right to choose either way

Something I also want to be understood is that choice works both ways, and at present it’s just assumed that choice means to abort. When people discuss a woman’s right to choose, it is always about her right to choose a termination without judgement.

If I respect someone’s right to choose to end their pregnancy, then I have every right to ask for the same courtesy back when I don’t end mine. At present when a woman is given a prenatal diagnosis, termination is expected and in most circumstances it is pushed. To be blunt about it, whether people want to admit it or not, the medical world is desperately trying to eradicate our children. I’ve heard of stories where a woman has decided not to have an abortion, yet every time she goes for an appointment she is reminded that she still has time. Basically, she is reminded that in this world her child’s life has no value and that they think she is making the wrong choice. Inmost cases they’re told how hard there life will be and overloaded with scary medical information, putting fear into women regarding conditions their child may or may not be born with. River has no medical issues whatsoever.

Choice is not a really a choice, unless it is an informed choice. If all information is not given, it just becomes an enforced decision

I hear often about women having the right to choose to terminate their child, but what about a woman’s right to keep her child? To keep her disabled child without judgement and without people telling her that she is making the wrong choice.

Providing up to date information should be mandatory, families deserve that. Equal information needs to be provided from both sides, medical and real life experience from families that are actually living it. Without this truth, then the medical world is doing both pregnant women and people with Down syndrome a huge disservice. There are many people with Down syndrome who are blowing medical theories and expectations of them right out of the water. This needs to be shown. And once a family has been given real information and has made a decision, then that should be respected, whatever is chosen.

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One thing I will say, is that I do really wish women would just own their decisions. Honestly, it’s really painful for me to hear people saying ‘I did it for my child’. That they loved their child so much that they didn’t want it to be born with no value of life. They didn’t want their child to lead such a terrible existence that they had to terminate for their own good. What I hear is that you think River’s life is awful and that you would never want to put a child through that. You couldn’t be more wrong and I will continue showing my son to the world to prove that opinion wrong.

It’s funny that people with Down syndrome and their siblings are often assumed to be be suffering, yet that couldn’t be further from the truth

I hear the argument that it’s unfair on the siblings often, and that having a sibling with Down syndrome is going to have a negative effect on their lives. But statements from grown up siblings of people with Down syndrome prove otherwise, and so does the fact that 96% of them say they wouldn’t change their brother or sister for another. And most important of all is the fact that 99% of people with Down syndrome are happy with their lives and who they are. So I respect your right to choose, but I also ask you to own it. There are so many valid worries when you’re given the diagnosis, I’m not saying these concerns are not real. But the truth is that you just don’t want a child with Down syndrome, the responsibility, the struggles and the changes it will bring to your life. Your life. And that’s ok, it’s ok to not want that. I respect and understand why you don’t want that, but own your choice.

I get that’s it’s a coping mechanism, a way to feel less guilty about your decision and defend yourself. I get that it’s one of the hardest decisions you will ever make. But you are also disrespecting me and my son by devaluing his life.

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By educating children and showing them that being different is ok, we really can change the world

It’s a difficult one for me because of course I wish people with a prenatal diagnosis would choose to keep their baby. I would love my sons disability to not scare people, to not make people think their lives had been ruined. I would love there to be more people with Down syndrome, for it to become more acceptable and not feared within society. I want that for my son, I want him to feel wanted and not that he is part of a group of people that doesn’t deserve to be here. But I understand why people fear having a child with a disability, I understand that not everybody will choose to take that on and I understand why.

So here’s what I want to happen and it’s a big task. I want society to change. I want society to accept people with Down syndrome and know their worth. I want people to be educated about disabilities, to accept people for who they are and embrace differences. I want children to be raised with other children who are different to them and learn as they are growing up that being disabled is nothing to fear. Being disabled or different  does not make you any less worthy of life. Educating the young is how we change society, not by inflicting rules upon the already grown.

I want to see people with Down syndrome in real employment, having great educations and being included within society. Really included, loved and valued. What I want more than anything, is for society to stop looking at my son and seeing a mistake. He is not a mistake. He is far from a mistake.

I want women and families to be given the opportunity to make an informed choice, all the true facts and every side of the story laid out on the table. If that is achieved, then whether a woman decides to keep her baby or not, to put it bluntly, is not any of my business at all. The choice is theirs, nobody else’s and that’s the way it should stay.

Mummy Times Two

5 thoughts on “I have a son with Down syndrome, but I still believe in your right to choose.

  1. Gemma says:

    Another excellent post. That is so sad about that young girl who felt she had to tried to kill herself.

    When I was asked about if I wanted to have the prenatal screening for Down’s Syndrome I got a strange look when I said yes but regardless we would be having the baby. I said that I have worked with Down’s Syndrome kids but the midwife proceeded to tell me what it was and only highlighted the negative aspects of a child with Down’s Syndrome. I don’t think most parents to be have any experience of being around people with Down’s Syndrome. So other people would panic when they heard all the things the midwife told me. It should be more of a balanced discussion.

    Having said that, I completely understand people that don’t feel able to have a child with Down’s Syndrome x

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  2. Les Johnstone says:

    Like you we never got to make a choice. We were in our early 20s, newly married and full of joy and excitement at the thought of our new life with our new baby. My wife had already had a beautiful daughter when I met her, whom I’m proud to say looks on me as her Dad and is my little girl even though she is in her 30s. The three of us eagerly awaited the arrival of our new addition. During the pregnancy my wife had the usual morning sickness and at one point the babies growth rate dipped but nothing to worry about. As there was no family history of genetic problems or disability no screening took place or was offered. Then on 19 December 1984 my wife went into labour a week early, no problems, we went to the maternity hospital and our son was delivered normally.
    He was floppy on delivery, resembled Yoda with all that wrinkly skin, but we were smitten. Due to his floppiness they took bloods to test but assured us it was routine. It was about 3-4 days later before we found out that he was Downs Syndrome, we had been discharged from the hospital as Mum and baby were healthy, the Paediatrician came round to see us. By then we had begun to wonder what was up as the staff were cagey when we spoke about how floppy he was. That said our attitude was whatever it is we will love this wee man and make sure he is able to enjoy his life to the full.
    The news was a bit of a blow but the hardest part was being told he may not live to be a teenager, he may have heart / lung problems, he won’t do this he won’t do that. This wasn’t managing our expectations this was deconstructing our world.
    We still hadn’t agreed on his name completely, being Scottish I wanted Robert Bruce the famous king of Scotland who had defeated the English at Bannockburn. The wife wasn’t keen on Robert but liked Bruce so we had his first name then we both agreed on Donald, after my step father a wonderful man who we both adored, I didn’t let on Donald was also a Scottish king.
    The reason this part of our sons story is important is because he has lived up to his name. A strong person, with determination to succeed and lead. Never shying away from a challenge and standing strong in the face of adversity, just as Kings of Scotland have done.
    I threw our GP out of our home when he came to do a routine check on Bruce and referred to him as a mongol who will be lucky to live to be a teenager. This was in early 1985 !!!
    We have had to fight for speech therapy when the Thatcher Government began cutting services and funding in the NHS. We have seen his social clubs and the facilities he and his friends relied on to enjoy a social life others in their peer group took for granted.
    Bruce went to mainstream school until it became difficult even when he had statemented support to keep up with his peers. He then attended a special needs school where he thrived and even went on to college. We bumped into a girl who remembered Bruce from his mainstream school, even though she had not seen him in 15 years. He leaves an impression on all who meet him.
    Bruce played football ( soccer) for his school and college, captaining the college team a couple of times. He has an NVQ in landscape gardening from his work with Shaw Trust who employed volunteers with special needs when they ran the contract for maintaining our local cemetery grounds, until the local Council awarded it to a private for profit organisation who have no interest in offering work to special needs, even voluntary work. He now works one day a week at a garden centre run with special needs volunteers.
    He wants, still, to be a soldier, policeman, ambulance man, despite having explained that he will not be able to become one as he would not be able to work out some of the more complex issues they have to deal with. He gets this but he still talks about it.
    He has been given every possible experience he wants to try, flown in a helicopter when we were in Aruba, scuba dived in Greece (didn’t quite make it under the water but donned the gear and got in the water), flown birds of prey, held snakes and a baby gator in Florida. Driven a car whilst sat on my lap, driven a go cart (well into the crash walls for the most part). Has flown on his own several times to visit relatives around the UK, as well as travelling on the coach to see his Aunty in Nottingham.
    The only real problem, physically, he has is IBS which can be controlled with a mix of diet and meds, he self medicates. He still lives with us, his wish is to win the lottery buy his own home then we can live with him ( yeah you read that right).
    He has given us so many laughs over the years. Some things were not that funny at the time but what kid doesn’t provide such moments. The day he received a letter from the Navy inviting him to attend a selection process following an online application he had completed, I had to ring the recruitment centre to advise them of the situation, due to data protection they had to speak to him first to confirm I could speak on his behalf. Just as well the armed services have a great sense of humour.
    The right to choose is, and must remain, a woman’s legal right. Yes a full picture should be painted for an informed choice and yes in making such a choice own the decision.
    Society still has much to learn from DS people and those of us who have been able to walk alongside them.

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    • Hayley - I am River says:

      Thanks so much for sharing your story with me. Your son sounds like he has had a wonderful life and in turn has made yours wonderful to. I love hearing stories about adults with Ds, it gives me hope for River’s future. Bruce is actually 2 years younger than me :). Thanks Les, I really enjoyed reading that x

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  3. Dawn says:

    Although I disagree with any abortion, I also don’t live where you do. Here, adoption is an option and the view of Down Syndrome, though still needing improvement, is not as primitive as for those who believe it is a curse or caused by witchcraft. My heart hurts for the moms there who feel they have no other options, and for those who won’t be able to know the joys of a child who has DS because their fear gets in the way. Your post was very well written and I appreciate you sharing your view on the T21 bloghop.

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    • Hayley - I am River says:

      Abortion is actually illegal here in Tanzania and many women die from carrying out their own. My opinion is really for any woman, anywhere. I actually find the adoption argument a tough one, as although in theory it sounds great, the chances of a child with Ds finding a home is slim. For me it’s not actually about believing in abortion ( I never would), its more about not judging others. I truly believe that if people knew the truth about Down syndrome then the abortion rate would lower without the need for women to lose their choices. Thanks for the comment 🙂 x x

      Like

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