Tag Archives: Chromosome 21 (human)

The two-way street

I have to admit to a secret weakness for those short videos that make their way round social media. I like the ones where you see how milk bottles are washed and refilled ( there is something equally mesmerising and taky back to the childhood yearsy about them), where kittens crawl over each other (amusing) and even the occasional feat of derring do (although I don’t like to see people hurting themselves). I’m always happy to share something along that has made me smile, and, occasionally, brought a tear to my eye.

Every so often, a video that I share turns out to be incredibly popular. Like this one, at 230 MILLION views, to date. https://www.youtube.com/watch?v=Biex1XR_mpo

Or this one, at nearly 10K. https://www.youtube.com/watch?v=wn8VBimrhOY

There is something about them that resonates, clearly.

Would I have shared them if they weren’t to do with Down’s syndrome? Maybe, maybe not, I don’t know. For me, these short videos hold an added resonance. I, too, have held my toddler and told him (and the world, or anyone else who happened to be there) that I loved him. I recognise the look in these mothers’ eyes, because my eyes have held the same. I have smiled through a tear, taken in a shaky breath at the sight of two brothers, one so tall, one smaller, older; and I have seen, in the corner of my eye, my own sons.

I know why they move me – but why do they move so many others? Why do they move people who have no close, family connection? I’ve thought about it a lot, on and off, and this is what I think.

I think it’s something to do with the challenge of the unexpected. There they are, big, brawny soldiers, being kind. Here are mothers of disabled children, enjoying their lives, having a giggle, being happy.

Because you see, the stats around Down’s are scary, not heartwarming. The vast majority of women in the UK who find out that they are carrying a baby with Trisomy 21 chose to terminate their pregnancy. The NHS is rolling out more and more accurate, earlier and earlier antenatal screening tests. The existence of these tests are welcomed. It’s scary and it’s sad, because these actions and reactions speak loudly about how Down’s syndrome is held in our society at large. A mistake. An aberration. A burden. Something we are better off without.

And I think that’s why these stories, because they are stories, work, it’s precisely why they are so moving. Because that love, that love that isn’t so much said as soaked through every action caught on screen, expressed between mother and child, adult brothers, and more, men who are, you know, Real Manly Men, is something that is, somehow, a surprise.

It is, I think, the biggest tragedy in all the discussion and thinking and acting around Down’s syndrome; that, somehow, you couldn’t love your disabled child or your disabled brother, that, somehow, the love that exists would be a one way street.

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Olympians

I’m not what you might call a Sports’ Fan.  In fact, I think I would go so far as to say that I come from a family who are singularly left cold by sports.  Nobody follows a football team, nobody watches it on the telly – except, that is, for the Olympics.  Last time we got carried away with the rush of enthusiasm that swept the nation and applied for tickets (which we didn’t get), and rushed off to see the Paralympics (tickets for which we did get) on a sunny day in September.  My mum and my uncle, her brother, even went so far as to keep charts, and ring each other up to compare.

One of the things I like about the Olympics is the variety.  I have to admit that I don’t go a bundle on the horse dancing thing or watching archery and I can’t see myself ever becoming a fan of boxing, but I find myself transfixed by the gymnastics (will they, won’t they fall off that beam?) and the cycling, if somewhat confusing in its scoring has been, for a UK audience anyway, an exciting spectacle.

Another of the things I like, as a teacher especially, is the sports-people themselves.  I like the way that they are so gracious (well, most of them, anyway) in both victory and defeat.  If they have a bad event, they pick themselves up and they carry on.  Sometimes, they even win when everyone thought their chance was lost.  I feel a bit sorry for them though, when they are interviewed, straight off the track or out of the pool, sweat dripping, still breathing heavily from their exertions, expected to come up with something coherent for the cameras – especially if they just missed out coming out on top.

I remember watching Victoria Pendleton interviewed, post-race, eyes bloodshot and the skin of her cheeks blood pricked, and I remembered the time that I looked like that.  After giving birth, I made my way to the loo and caught a glimpse of my veined reflection in the mirror over the sink (nothing like that old advert for tea where the slightly flushed young woman took a grateful sip of her steaming brew while everyone offered her their smiling congratulations), and I thought that I had never made quite so much physical effort either before or since.

But, apart from the evidence of hard labour, the thing that strikes me, almost every time I watch and listen to these athletes at the peak of fitness, an example, if you like, of the tippety top a human being can actually be, is how, when they clutch their medals, they give the credit away.  They don’t stand there and agree that yes, they are the best of the best and thank you very much; instead, they are at pains to point out that they couldn’t do what they do without teams of people, friends, family, people paid to look after them, at their side, supporting them to live their chosen lives.

I thought about these Olympians, these examples of human greatness, the other day, when I watched a programme on TV and I listened to a debate on the introduction of a new blood test that will help doctors to identify possible pregnancies where the baby is carrying a little extra in the form of chromosomes.  I thought about them, and I wondered how terrible it was that somebody should have to be helped, or that someone might need some support in order to achieve their dreams.

I wondered if there wasn’t anyone who didn’t worry for their child after they had gone, and how using this worry, the fear of how other people will behave towards them, fear of living a life supported, as a justification for not bringing that baby into the world at all was perhaps the saddest thing of all.

 

 

You can watch the debate here, from about 18 minutes in.  I’d be interested to hear your thoughts.

http://www.bbc.co.uk/programmes/b07r24yr

 

The Down’s Syndrome Memo

Sam didn’t get the message that he has Down’s syndrome.  Was that something I used to say?  Was that something I used to think, used to say, when he was little, and I was still making sense of learning disability in the family?  Is it something I would still think, still say? If I say it, does it mean that I don’t accept my child, just as he is?   That I am, somehow, defensive?  And more, should I feel bad about that?

Well, yes.  And no.

It’s not something that I would ever say now, not now that Sam is fifteen and I’m a long way down the parenting road from the days when milestones mattered, when, when we sat in our groups in church halls and community centres, when we drank gallons of tea and coffee in each other’s houses, we discussed the minutiae of growth charts and feeding and nappies and developmental steps, each, in our own way obsessing over our offspring and seeking reassurance and validation from our peers that we were, in fact, despite our floundering, doing OK.

Now, now that the gap has widened between Sam and his typically developing peers, his typically developing siblings, and I’m a long long way from the reading book competition, or the setting competition, the sports’ day competition, the Level competition or all the other competitions we indulge in when we discuss our children, there is no doubt that he has Down’s syndrome.  You can see it in his face, in his body language, his stature.  You can hear it in his voice.

But when he was little, when I might have said those words, or heard those words, what did they mean?  Did saying it, or thinking it, somehow mean that I am making out that my child with Down’s syndrome is better than someone else’s?  That because my child can do something or other, all the other kids are somehow rubbish?

It meant that I didn’t know, when he was a baby, what Down’s Syndrome was.  It meant that my internal expectation, like that of many (most?) people who don’t know anything about learning disability until it rocks up in their family, was wildly out of kilter with the babe I held in my arms.

It meant that I was proud of him.  That here he was, the baby that caused the long faces and the soft sighs, the reason I was hidden away in a private room, the recipient of concerned glances, of well meaning, but crushing comments, defied the expectations of those who would have thought I’d be sad.

It meant that here before me, and here besides me, is a real person.  Not a stereotype, not some shuffling, shambling monster, of whom I should be afraid, but a living, breathing, complicated, complex person.  It meant that, although he had a diagnosis, and one which society seems to disapprove of, I had, somehow, got beyond it.  It no longer mattered.

What I was probably saying, while I stamped my angry way around my small town, shoving my pushchair in front of me and learning how to get through heavy shop doors without causing myself, or my baby, serious injury, was that other people’s judgements didn’t matter.  That I was determined that they didn’t, and that they don’t matter to me.  And that they didn’t matter to my son, because he, no matter what his talents, or his difficulties were, and are, is doing just fine.  Just as he is.

That memo, the one that told me not to believe in my child, the one that told me that I shouldn’t hope for the future or take joy in today, was never meant for him.  It was meant for me.  And I never took any notice of it.  I threw it away.

 

 

 

Debilitating Disease

Debilitating – to seriously weaken, to affect your strength or ability to carry on with regular activities. Usually associated with illness or disease.
(Cobbled together from various dictionaries.)

If there’s one thing I do get tired of, it’s the constant association in mainstream media – and therefore the mainstream consciousness – of Down’s syndrome with disease, suffering and generally having a terrible life. So, I thought I’d tell you about Sam’s week, and let you make up your own mind.

Monday – rode bike to school. It was kind of an ordinary day, but I needed my gloves and Mum got cross when I could only find one and Dad got cross when he couldn’t find any.

Tuesday – rode to school with a friend. Went to a college for an art activity, went swimming, went to youth club, hung around with my mates.

Wednesday – didn’t want to get up. Got up. Rode to school with a friend. Grandma picked me up from after school club.  Love Grandma.

Thursday – Mum gave me a lift to school because my little sister wasn’t feeling too good, but the traffic was bad so I walked the last bit on my own so that they could turn around and Little Sis wouldn’t be late. Guitar lesson with Dave. Got to love guitars (although the practice not so much).

Friday – bike again to school with Dad. He couldn’t find his gloves again. He was annoyed again. Mum kept out of the way for some reason.

Saturday – football. I’m putting football towards my Duke of Edinburgh Bronze award – it would help if the parents could find the form that the group leader has to sign. Friends came to play. Much mooching.

Sunday – boring, boring, boring. There’s never anything on the telly and if I’m really unlucky, Mum’ll make me go to church or do my homework.  I don’t like homework.

 

Well, Sam didn’t write this. I did. At the moment, he is upstairs in his room playing DREADFUL MUSIC FAR TOO LOUD, in the manner of a soon-to-be fifteen-year-old.

The only debilitating thing about Down’s syndrome is other people’s attitudes. And we need your help to help change those.

Fell the Fear

It came as a bit of a shock the first time I realised that someone, an adult someone, might be afraid of Sam.  I mean children, especially the little ones, are frightened of all sorts of things, like horses, they are suspicious of things/people/places/situations they don’t understand and they are never backwards in coming forwards with the stares, the outward signs of an inward uncertainty.  A smile from me, an encouraging widening of the eyes is usually all it takes to reassure, before the world can start turning again, properly aligned upon its axis, and all is well.  But adults, well, that was an unpleasant surprise.

One of the things that was mentioned that alerted me to the fear was his size.  At fourteen, he is no longer the tot he was, the poppet I could tuck securely under one arm should the need arise.  He has hit the phase of contemplating the inside of the fridge to examine the possibility of snackables, and inhaling the contents.  Second helpings are as big as firsts.  If he decides that he isn’t moving there isn’t much, physically, that I can do to force the issue.

‘Throwing his weight about’ was the phrase.  So he’s hefty, I get that, but, honestly, the kid is half the size of other fourteen year olds I know.  His feet remain smaller than my own (just).  He just about reaches my shoulder, and I’m not an especially tall woman.  His heft is tempered by his softness; what muscles he has are ill-defined, weakened by the low tone that ensured that nothing untoward was ever posted into our VCR because his fingers bent around the flap, no matter how post-box like the temptation.

I wonder if the real issue might be his continuing difficulties with communication – speaking.  It could be that unless you know him well, and you know the odd sign or two, he is difficult to understand.  His speech is indistinct and lacks control.  More often than not he sounds as if he is shouting and his overtures of friendship to new acquaintances are met with blank looks rather than smiles.  Or it could be the speed with which he retreats into a fantasy world, jumping from ‘how do you do’ to the Strictly results in the blink of an eye.

Maybe it’s the air of unpredictability that hangs around him like a shadow that does it.  Sam lives life with the brakes firmly off.  Whatever he feels he feels immediately, responds accordingly.  Calm to chaos in moments.  One minute you’re having a picnic, the next you’re darkening the doors of the local A&E.  What is every-day normality to me, to be alert to the needs of my child, is frightening for other people.

Whatever it is about that extra chromosome that slows the responses in his brain makes calculating consequences a challenge.  Children in schools are so regulated, almost every moment of every day organised and accounted for that there’s not much room for an unexpected face-first trip down the upalator there; it’s easy for teachers to miss.  There aren’t many puddles or much mud there either to tempt a person to splash, no matter what their age, so it could catch you by surprise.

Oh, I don’t entirely blame them, the fearful.  There’s so many stories floating around about Down’s syndrome, and they aren’t all fluffy.  There’s a lot of negative stereotypes to overcome.  And not just people with Down’s.  I remember being afraid, a long time ago, of ADHD.  What was going to happen when the drugs wore off?  Was he going to start leaping from the tables or throwing the furniture?  And what about people with ASD?  I’m pretty sure we could dig up a few negative images there too.

That’s one of the problems with labels, you see.  Once you start applying them you stop seeing the person and the fear takes over.  What will you do if he says hello and asks to come to play?  What will you do when he turns up in your class?  What will you do if he’s in your class and the unexpected happens?  Deny him a chance to get it right?  One strike and you’re out?

I really want an inclusive education, an inclusive society.  I want it, because getting to know each other, seeing beyond that label – and that’s the adults as well as the kids – is one of the best things we can do for people like my son, because, let’s face it, people with Down’s syndrome, or any other kind of disability or difference from the privileged patriarchal group you care to mention, have a raw deal.  It’s one of the best things we can do for the fearful; when we get to know each other, it slowly slides away.  He has just as much right to participate in a mainstream life as anyone else.  It’s why we’ve always been in the thick of things, joining in with the mainstream world.  It’s why I get so cross when I see inclusion failing.

And part of that failure is the failure to make adjustments – to your preconceptions, both of what a child with a learning difficulty (whatever that is, let’s use Sam metaphorically here) can, and should be able to do.  I’ve had to adjust my thinking many times over all sorts of things, about dressing and drinking, walking, talking; everything.  I’ve had to find new ways to help him to find a place within the norms of society and, in the process, break down some of those barriers too.  There has never been a time for me when I have made no allowances for the fact that he has a learning difficulty, but equally never been a time when I lowered my expectations.

I am not afraid of Down’s syndrome.  I’m not afraid to make a change.  Are you?