TESTING FOR DOWN’S – WHY DO I EVEN CARE?

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additional needs, down syndrome, down's syndrome, equality, family, inclusion, love, pregnancy, special needs, Uncategorized

Unless you have been living in a cave with no wifi access for the last few years, you will have heard all about the new prenatal testing for Down’s syndrome. Hailed as a modern medical miracle, the fact it is non-invasive ultimately means less “healthy” foetuses will be miscarried through the procedure of amniocentisis and CVS. The flip side to this means that (potentially) more foetuses with Downs syndrome will be intentionally aborted. The figure already stands at about 96% in the UK, with the majority of babies with Down’s syndrome being diagnosed post-natally having “slipped through the net” (words of my genetic counselor).

As the test is now available in the UK (privately I believe) it has been even bigger news than usual. I have had the pleasure of being invited to give my own personal feelings on the test to a few journalists covering the story. I am not an expert, I never claim to know the answers, I am just a mum who can draw on her own experience, thoughts and feelings. My experience will differ from the next person’s and all I can do is be honest and up front.

It was an interview with Channel 4 though that really got me thinking. The interview was very last minute but it should have occurred to me that there would be someone there from a different view point of mine and yet I hadn’t really prepared myself for the obvious questions that would come up. I had purposely tried not to second-guess what would be asked as I did that once before and ended up totally lost when the first question was not what I was expecting.

The interview went ohhhhKay. I was incredibly nervous and facing someone who feels my son’s life isn’t worth living was hard (she has never met him by the way). But I respect choice and therefore I respect different opinions to my own. The journey home, basking in the lovely feeling of post-adrenaline and nervous come-down, gave me chance to think about the interview. I wanted to kick myself with all the things I SHOULD have said that I didn’t, but I only had a few minutes and the overall message from me was what I wanted it to be.

I am a bit scientific, rather than spiritual, when it comes to abortion. Maybe not to the level of Richard Dawkins, granted, but I am very rational and functional about it. I, personally, don’t see a 12 week old embryo (which is actually only 10 weeks old) as a baby. It is a bunch of cells. Yes, it has the potential to become a person, but at that moment in time it is a tiny unviable speck. That’s not to say I wasn’t completely overawed when I saw each of my own babies, whooshing about in my stomach with two arms and two legs and strong beating hearts at my 12 week scans – or totally devastated when I saw the still, unbeating heart of the one I later miscarried. But I was functional about it. I cried for the journey I thought I was taking, the baby I thought I was having, that I had allowed myself to dream about. But I accepted nature’s path and was Britishly stoic about the whole thing.

I am pro-choice. I only really care about my own decisions. Decisions that affect me, my life and my family. My decisions are my business and I don’t expect others to have an opinion on them (unless my actions somehow have an impact on them in some way). I respect the more spiritual among us who feel differently about abortions, but I also respect other people’s situations that are no concern of mine. After all, every abortion that is carried out does not affect me in any way, “healthy”, “down’s syndrome” or otherwise. I have my family unit, I wouldn’t change it for anything – extra chromosomes, Star Wars obsessions and all and it doesn’t actually affect me in any way if no more babies with Down’s Syndrome are ever born again.

“so…..? Why do I even care about testing? Why have I spent the last month or so spouting off about it?”

It is easy to give out the “pro-informed choice” line. This is definitely one of the reasons I care. I know that I was not informed and, as a result, was scared witless when given my first baby’s diagnosis at 24 hours old, right in the middle of what should have been babymoon heaven. So much emphasis is placed on “testing for Downs” and that in itself put the fear of God in me. All the way through my pregnancy practitioners had talked of the “risk” of Downs and so on. Lets not forget too that the “testing for Down’s” is for a whole host of other things too, some arguably a lot more serious and life limiting. It is no wonder we are all scared of it. I also had an incredibly outdated idea of what Down’s syndrome means in the 21st century. I grew up in the 20th century in a time of segregation and exclusion, it is no wonder I thought it was something to be scared of, something “different”

But….it still doesn’t affect me one bit if no more babies are ever born with Down’s syndrome.I could go on to paint how rich and fulfilling our lives are, thanks to having a child with Down’s syndrome. I am undoubtedly a BETTER person. I see the world in a much more balanced way. I celebrate the uniqueness in everyone. I think a lot more before I judge. I have different aspirations for my kids now. I am the mum-to-be who googled the local Ofsted reports when I was pregnant – I look back and laugh at myself now. I know that I will nurture my kids in whatever path they choose or thrive. Academics is a nice-to-have. I want others to be changed like this. I want others to see the world as a better place and experience actual physical pain in their chests when they see their child perform at a dance show, or score a goal, or write their names for the first time. I know all parents feel this, but somehow when you had wrongly written off your child at birth, and know how much harder (s)he works to achieve stuff others take for granted, the feelings are magnified by a million.

But, hang on, that is all very well….it still doesn’t affect me one bit if no more babies are ever born with Down’s syndrome.So what on earth is it I care about? What is it that motivates me to be so vocal about our lives? Well firstly, the suggestion that my son does not have a decent or good quality of life hurts me. It feels like a slur on his gorgeous, trusting, hard working, driven, witty and bright being. It seems abhorrent to me that some think he shouldn’t be here, that he doesn’t add anything and is a burden. He has enriched my life immeasurably and is an equal member of my family. If you could hear him howling with laughter with his brother, or in cahoots with his sister, you would see what a typical life he leads.

In fact, the other day a close family member told me they didn’t understand my blog and the need to overshare so much information. Seb is just Seb to them. Simple as that. The sentiment is wonderful, it choked me up. Yes, yes, yes! They get it. Seb IS just Seb. But unfortunately not every family has a member in it with Down’s syndrome and there has been plenty of times that Seb has been “the Down’s kid in reception” or referred to as “they” or “them” as if all people with Down’s are a sub group of people within the human race, instead of just “Seb”.

I can’t deny I did go on to question my own motives. Then just when it mattered most, I received an email from someone proudly showing me a photo of their sister-in-laws newborn baby. A miracle baby born to a family who thought couldn’t have children…….a baby with Down’s syndrome, who had been diagnosed at 12 weeks gestation. The mum had been thrown into turmoil and assumed she wouldn’t cope. With some encouragement from the friend who messaged me, and having read various blog posts on the internet (which I am sure were not exclusively mine), she decided that everything would be ok.

And then just last week I took Seb to a birthday party. It was his dear friend William’s roller disco. I had moments when I wondered whether we should make excuses and bow out gracefully, knowing he would struggle on his skates, but then I realised that would go against all the things I truly believe in. How silly to refuse an invitation to be just like his mates.

And so he went and, as always, the children amazed and surprised me. Delighted at his arrival, they couldn’t wait for him to get on the floor and skate. He was inundated with offers of help from his friends (and his friends’ older siblings); some of them very established skaters but not minding one bit about slowing down to help a friend.

On the day after the party I received a message from a mum of a boy from another school telling me her son had not stopped talking about Seb since their meeting. Seb had made an impact. A positive one.

And there it is. This is why I care. This is why I bother to make the noise I make. There is a new generation of people out there, growing up with all dimensions of life’s rich tapestry who can see the value of everyone. Kids who are inadvertently crafted and shaped as better, more tolerant humans than in my generation.

I truly believe that in years to come, if these children were faced with a pre-natal diagnosis, or even delivering a pre-natal diagnosis, they would be dumbfounded at the notion of terminating……..and yet, just as we are making such strides in inclusion, there will be less people with Down’s syndrome in our communities to include.

That’s why.

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7 thoughts on “TESTING FOR DOWN’S – WHY DO I EVEN CARE?”

  1. dderbydave says:

    Wow. That really was worth the read.
    Like you, we can’t see life without our boy.
    We were given grim warnings early on as “soft markers” were found on his scans and various googlable terms thrown into consultations. The possibility of still birth was mooted too. But we never considered abortion.
    I won’t say life is a bed of roses because it isn’t. His challenges are ours and some days life is tough. But we are who we are and he is as much one of us as any of his sibs.
    My feelings on pro-choice are my own but I know that without Ashley we wouldn’t be who we are.
    Thanks for today’s post.

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  2. Thank you so much for taking the time to write such a lovely and insightful comment – and for reading that blog post, it was a bit epic / War and Peace but it is such a complicated issue!! I agree, life would often be much easier without Seb in it but it most certainly would missing a LOT of sparkle…..Love to you and your family.

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  3. Here, here. I couldn’t agree more with your post. I support a child with Down’s syndrome who appears to be constantly happy and I can’t begin to describe how much he has taught me and his classmates. I certainly see why you care. Thank you once again for taking the trouble to write this. I look forward to the next post.

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  4. Thanks for the post. You son is beautiful, by the way :). I am curious. Why do you think here is a new generation of people who can see the value of everyone? Kids who are better, more tolerant humans than in our generation? I doubt they learned these virtues from their parents, who were intolerant of differences, practiced exclusion of the unborn, and did not see the value is each person to a rate of about 96%.

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    • Thank you for your kind comments about my son and for taking the time to write. My personal feeling is that my son’s generation are growing up with “difference”. If you asked a kid at seb’s school to describe him they would say “he’s good at football” or “he has blonde hair and is good at running” – ask an adult and they’d most likely say “the downs kid in year 3”. Seb’s friends just see Seb. They see he needs some support but they see him as a person, not as “Down’s syndrome”. I grew up in a time before inclusion. I saw “disabled” people as a sub group of people that had their own school and outings etc. I never had the chance to see past that label. And that’s why I was so ignorant. I have seen Seb at birthday parties with his friends from school, his slightly irritating quirks didn’t even get noticed – like wanting to “help” the magician, carrying on when he was “out” of musical bumps etc. By the same token he went to a friend from swimming’ party where the kids didn’t know him. They got really annoyed with him and were really intolerant of him. It wasn’t their fault obviously but it made me see the benefit of inclusion and how it promotes acceptance. I feel that people with downs are the best tool we have to change attitudes – by being seen and heard within our communities. Hope that explains my thinking a little more. All the best, caroline

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