To be or not to be – the dilemma of choice

Everyone is faced with choices, all of the time.  What to have for breakfast, what to wear, how many times to try extracting your teenager from their bed, red wine or white wine, coffee or tea, chocolate or …. no, that’s not a choice, always chocolate!

At the moment the Saunders family is facing a lot of choices. We are moving, to Dorset, next year.accord-ny-house-moving-1  So the choices are huge, small, never-ending and threatening to be overwhelming.  Where shall we live?  How rural?  How on earth do we decide what out of our huge amount of accumulated stuff can be ditched?  (And how can I possibly be expected to decide which books should go?) When do we put the house on the market? Which church will we choose?  Where will Alice (17-year-old who has Down’s Syndrome) go to college?  I am already getting so bemused by all of this that when my husband asked me where I wanted to go for a dog walk this afternoon, I almost burst into tears!  Stop asking me to make decisions!  (Apart from the chocolate one, the chocolate one is a very easy decision, closely followed by the “Glass of wine?” one!)

Some people, however, have to make a huge choice, bigger even than whether or not to move house.  A choice which is literally a matter of life and death and a choice which is very much in the news at the moment.  This decision centres around the new antenatal screening test Non-Invasive Prenatal Testing, or NIPT.  This test is due to be rolled out in this country to test for three conditions (currently) – Down’s Syndrome, Edward’s Syndrome and Patau Syndrome.  Of course, tests already exist, but this new one is much “easier”, consisting of testing a sample of the mother’s blood to extract traces of the baby’s DNA which can then be screened for chromosomal abnormalities.  It isn’t 100% but will give a very good indication of the likelihood that the baby has one of these conditions which can then be confirmed with an invasive test, such as amniocentesis.  Of course, tests are already available which have the same outcome, so women, parents are already having to choose, but this one is much more straightforward and therefore likely to more widely taken up.  Unfortunately, the decisions which follow are no more straightforward – decision one, whether to have the test and decision two, what to do about the results, should they be positive (although many, if not most, people would see a positive result as very negative).

Now some people make the first choice (whether or not to have the test) with every intention of continuing with the pregnancy, but being prepared.  Many people, however, having received the news that their baby has Down’s Syndrome (and let’s be realistic here, almost all of the current debate and publicity centres around Down’s Syndrome) then have another heartbreaking, traumatising, far-reaching choice to make – whether to have a termination or continue with the pregnancy.  And this is where what I consider to be the most important factor comes in – information.  In order to make a decision of such enormity the baby’s parents must have accurate, up-to-date, balanced, unbiased information on which to base that decision.  It’s no use just giving a list of negatives, all the things which might cause problems, all the possible health problems, all the extra care which may be needed, the level of developmental delay which could occur – parents have to be told about what people with Down’s Syndrome can achieve, that almost all will learn to walk and talk, will go to mainstream school for at least part of their education, will have friends, will learn to read, will be cantankerous toddlers and bolshie teenagers, may have a job and live independently with support.  Knowledge is everything, knowledge which encompasses all possibilities.

I chose not to have any testing with any of my pregnancies, but had I done so I know that I would have wanted to know about as much as possible about any condition my baby may or may not have.  Maybe I’m a coward, I didn’t want to have to make that choice, not that the result of any screening would have made one shred of difference, I wouldn’t terminate.

My youngest daughter has Down’s Syndrome.  dsc_0355I know that having a child with additional needs is no bed of roses and I also know that we are fortunate that Alice doesn’t face as many challenges as some do.  I know that some people feel that they just couldn’t cope and I would never judge anyone, but it is absolutely imperative that such massive choices are made based on the best information possible – we owe that to everyone involved.

In the meantime, just don’t ask me if I want tea or coffee!

 

 

Education or Eradication?

Here in the UK a new test is about to be introduced to make it easier to detect, before birth, whether a baby has Down’s Syndrome. Apparently this new test is a blood test for the mother from which traces of the baby’s DNA can be extracted and tested, so giving a definitive result without the risk of miscarriage.

My heart sinks.

Not just because I have a daughter with Down’s Syndrome, but because, yet again, it is portrayed as something to be avoided at all costs.  It really isn’t, there are far worse things.  My heart also sinks because I think “What about Alice?  What about my wonderful, bright 17 year old daughter, who can and does, read the news, watch the news and read other peoples’ opinions on it on her iPad (which has to be surgically removed from time to time – did I say she was 17?!). What is she going to feel about that particular headline? “Test to eliminate Down’s Syndrome hailed”, “Babies with Down’s Syndrome don’t need to be born”?  Will she think “shouldn’t I exist then?”.  I hope she won’t.  I hope she knows how valued, loved and admired she is.  But will she have a slight niggle?

I know that not all people with Down’s Syndrome are as capable as Alice.  I know that many have major health problems which she has largely avoided and I am so very thankful for that.  I also know that many people feel that they need to know that their baby has Down’s before birth, not so they can terminate, but so they can prepare themselves and their family. But sadly soAlice at work 2 many people see it as such a problem that, offered a straightforward blood test with no risk to the baby, they will not hesitate to take it and terminate – the figure quoted on the radio was an extra 90 terminations a year.  What really worries me is that I heard a paediatrician quoted this morning as saying “we have a duty to make sure parents are aware of all the likely problems”, then going on to list them at some length.  Yes, but you also have a duty to give parents-to-be a balanced view, to make sure that they also understand that it is likely that their child will go to mainstream pre-school and school, will learn to read and write, will have friends, will drive their parents mad with whatever the latest Disney film is and will have a great life.  In order to make such a huge decision, parents have to have all the relevant information, positive and negative.

I am the first to acknowledge that Alice, although she is pretty capable and independent, loves life and is very happy with who she is, does have difficulties and faces challenges (the latest is coeliac disease).  The gap between Alice and her peers has, as we knew it would, widened over the years, but heAlice & Gracer best friend also has Down’s syndrome and they have a fantastic time.  We all choose friends who are like us, on the same level, who enjoy the same things, so that seems entirely natural to me.

I can’t help worrying that having a new, safe, accurate test for Down’s syndrome will mean, inevitably, that fewer and fewer babies are born with the condition.  This seems like an extreme version of the bad old days of shutting them away in institutions.  Will this mean that society goes backwards, that we will become less tolerant and inclusive of people with Down’s syndrome because there are fewer of them?  Surely we have a moral obligation to educate society rather than eradicate part of it.

This post could get very long as I stray into the realms of “why is Down’s Syndrome so bad?” (presumably because it is visible and detectable), “what about other disabilities?”, “what about people left disabled by illness or accident?”.  Why are those groups more valued, if they are?  I won’t go there … this time!

Suffice to say, as I’ve said before, I wouldn’t change my daughter for the world, but I would change the world for my daughter.

 

 

What I call positive

 

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My youngest “child” (she’ll be 17 a few days before Christmas) has Down’s syndrome and I recently responded to an invitation to list the positives about having a child with DS.  This was my post:

“Right, I’m going to be a bit controversial! I have lots of positives, but not all of them will be regarded as such by everyone. I love the fact that my daughter (17 next month) is grumpy, stroppy, loud, funny, uncooperative, stubborn, enthusiastic (on her terms!), musical (as are her 3 siblings), sometimes happy, sometimes unhappy, impossible to get out of bed in the morning, spends too much time on her ipad, is very computer literate, kind, compassionate, monosyllabic, uncommunicative, won’t stop talking and above all is herself, with her own opinions and outlook on life. In short, she is, in many ways, the crazy mixture which makes a typical teenager and I wouldn’t have her any other way!”

The majority (but not all) of the other replies were from people whose children are still, well, children!  They were wonderful descriptions of their children, overwhelmingly positive and much more what you would expect to read.  Most could have been written by me a few years ago, but now my outlook has changed.

When you have a child with a disability you enter a parallel universe.  A universe where every aspect, every minutiae of your child’s behaviour, character and ability is under examination.  Whilst I am eternally grateful that Alice gets lots of support, I never knew as much about what happened at school, youth club or anywhere else, about what they did or didn’t do or say, as far as my older three children were concerned.  Children, teenagers and presumably adults with special needs (although we’re not quite there yet!) are subject to scrutiny – something which would go unreported in a typically developing person of a similar age, is mentioned and discussed with parents.  I have now got to the stage of saying “but that’s normal teenage behaviour” because it is and I don’t usually need to know about it!

You see, I know my daughter, I know that she’s awesome, wonderful, empathetic to a fault, caring and kind.  I also know all the other “positives” mentioned above and whilst I might not always like it, I regard the deep, theatrical sigh that often ensues when I’ve just asked Alice to empty and fill the dishwasher or put her clothes away, as a happy and positive reminder that she’s a teenager! (Honest!)

 

 

Grown up?

Here we go then – my first foray into the world of blogging.  No particular reason, other than I rather enjoy writing.

I live in West Sussex, just a little inland, but close enough to the sea to satisfy my cravings and walk the dog somewhere he won’t get covered in mud – I can cope far better with sand and water than mud and other unmentionable substances!  I’m married to Alan and we have 4 children, 2 of whom have permanently moved away from home, one temporarily (last known whereabouts Ecuador!) and one is still here with us.  We also have a gorgeous 7 month old grandson – not at all biased, no, not me.

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Our youngest daughter, Alice, has Down’s syndrome, so that and related themes will probably feature in my ramblings on a (very) regular basis.

Why the “surprised grownup” in the tag line?  Well, I’m just not sure how I arrived at this stage – a supposedly responsible adult.  The realisation has just hit me that my eldest offspring, Beckie, is 26.  No big deal on the surface of it, except that, inside my head I’m still about 26, so my daughter can’t possibly be.  I don’t feel old enough to be the one who knows what they’re doing.  If someone asks my opinion or wants to know how to do something I still have a marked tendency to look for the grown up to ask, because that just can’t be me!  And it still does surprise me, on a regular basis, that I either am still or have been responsible for the lives of 4 human beings and am quite capable of fighting tooth and nail for them when necessary against all those grown ups out there who aren’t on our side.  I’m definitely not grown up enough to deal with everything that having a child with a disability brings, despite the huge amount I have learned about disability, special needs, education, benefits – the list goes on.

Really this all comes down to confidence and having the self awareness to recognise and celebrate the stage of life at which you find yourself.  I like this stage, I like having older children who are independent, feisty and amazing human beings and I love being a Granny.  I know I am a grown up really – I just don’t feel it inside my head (which, admittedly, can be a rather strange place) – and it would be rather nice, sometimes, to hand over all the responsibility to someone else!

 

The musings of a surprised grownup