Sticking plaster

My daughter loves a plaster.  There is nothing quite like that sticky bit of fabric (it doesn’t matter what colour, what design, waterproof or not) for making everything better.  I’m not quite sure what it is about them that she loves, but they have been an enormous source of comfort since an early age.

It could be visual.  The fact that she can no longer see the cause of her distress in all its gory glory could be the thing.  That plaster looks all clean and everything seems under control.  And of course, the wonderful, magical thing about plasters is that when she takes one off (eventually), blackened by grubbing about doing whatever it is the nine year old girl does in dens these days (I think it’s mostly digging), the wound has gone, or, at the very least, the bit that caused all the tears and couldn’t be kissed better is shrunk, soft new skin instead of scratchy scabs.

For L, the bigger the plaster, the better.  She is particularly fond of those enormous square ones, the ones that cover an entire knee, or an entire elbow with room to spare, no matter how tiny the splinter; I think it’s the drama queen in her that enjoys the attention as she moans and groans her way around the house, limping between destinations, her downturned little mouth begging your sympathy.

Now don’t get me wrong.  I’d hate you to get the wrong impression of my daughter; she is no more an attention seeker than any other nine year old, but I do understand how it works, the ‘special-ness’ that injury confers.  When I was six, you see, I bore the biggest plaster ever stuck to human child.  It covered a scar that ran around my rib cage and along my shoulder blade and I well remember the pain of its removal; my gentle mother, gingerly picking it loose, shoved aside by an efficient nurse who was a fan of the ‘get it over with’ approach.

I never got to show anyone my plaster, though.  Not any of my peers, anyway.  I was far too wrapped up by hospitals for that.  No, rather than developing a fondness for plasters, for me, it was scars.  That scar that zipped me up was my tattoo, the mark that marked me out.  It took years before I tired of explaining, before it faded to a shadow that barely raises comment.  Not that I hide it, it’s impossible in the swimming pool after all, it just doesn’t define me any more; that specialness, that difference.

I got to wondering, the other night, while I was supposed to be sleeping, whether those plasters that my daughter loves so much aren’t a bit like the labels we apply to children.  Like the sticky strips my daughter insists on, these labels, like SEN and PP and FSM and ASD and ADHD are invested with far more than their properties of coverage.  Like those plasters, especially the big ones, or the ones with OUCH written on them in loud colours, the labels are a sign post.  They are a signal that something is wrong, that the person who bears them, or the person who parents the person who bears them, needs special treatment.  Adjustments.  Protocols.

The thing is, though, the thing that occurred to me in those long moments of sleeplessness, is that, unlike the plasters, under which the magical process of healing happens, the removal of which reveals, if not perfect skin then at least a work in progress, the labels we apply to children change nothing.

A child living in reduced circumstances still lives there even if they have PP or FSM after their names.  An application of ADHD doesn’t make a child’s behaviour any less zippy or impulsive.  The parents of dyspraxic children already know their child struggles to organise themselves and their bodies.  Sam had that extra chromosome from the moment he was conceived.  The label, the naming of the condition didn’t actually make a blind bit of difference to the situation.

For all that I know about Down’s syndrome, for everything that label has told me about low muscle tone, or auditory processing or the development of speech and language, it has never, not for one moment, made anything better.  It hasn’t made it easier to put him to bed, or do as he’s told, wash his hair, put his toys away.  It hasn’t made it easier for him to get to school, or me to get him to school.  It hasn’t made it any easier to learn to read.

Of course, I don’t know what it’s like to live in a state of perpetual confusion.  I don’t know what it is to live under the shadow of the unknown.  Neither me, thanks to my scar, or Sam, thanks to all manner of physical tell-tales have ever had to suffer the funny looks or questioning glances courtesy of an invisible disability.

But as much as L loves her plasters, Sam can’t abide them.  For him, the plaster itself, not the wound, is the cause of considerable distress.   If he comes home from school bearing one he isn’t happy until he’s torn it off.  It is only when it is removed that he is all better, no kisses required.

Sometimes, he’s quite profound, my boy.

The Double Edged Sword

I can never really get my head round the need people have to label their children.  OK, so I understand the immediate labels of ‘male’ and ‘female’; after all, gender is one of the first ways in which we categorise the world, but really, those labels, when you think about them are enormously troublesome.  Take ‘girl’, for instance.  It’s an insidious little label.  You wouldn’t think it would make so much difference, but before you know where you are you have fallen into a sea of pink frills and even more pink plastic, of hair bobbles and sit up nicelies and don’t get that dress dirties.  ‘Boy’ is just as bad.  Man Up.  Little Monster.  Beige and navy blue.

The big one for me, of course, is Down’s syndrome.  Even without the banner ‘red hair’ or ‘boy’, Sam has a stereotype to contend with every day; one that tries its hardest to lock him into loving everyone and music, regardless.  I lay the blame firmly at the feet of my mother.  Like generations of teachers before her, concerned for the wellbeing of a child (me), she was at pains to point out that we were in the business of proving everyone wrong, and I maybe took it a bit far.

The thing about these labels, though, is that we need them.  In a medical context, the diagnosis of Down’s syndrome meant that we, baby Sam and I, entered a protocol that checked him out for all sorts of things, his heart, his guts, his thyroid, and, as he grows, his eyes and ears and feet; anything, in fact, that might cause him trouble, or hold him back, or make life more difficult for him than it needs to be is under scrutiny.  I might find the number of appointments a drag, a hassle and a cause for fear, but they are there to ensure his health is as good as possible.

In my professional world, in education, the labels hold the key to all manner of things.    Understanding of why things aren’t progressing the way they ought.  Adjustments, special resources to make mainstream life a little easier, more copable.  Extra help.  These labels, the ones that unlock the treasure trove of additional funding are highly sought after.  Everyone, after all, wants the best for their children, and particularly those with Special Educational Needs.  There’s a tension, a balancing act to be had, a delicate wielding of a double edged sword.

There is always an undercurrent, though, always a story that hardly dare speak its name; a nameless, spectral guest at the feast, or elephant in the room if you prefer, whenever that label is applied, and its name is Blame.

It’s not very nice, is Blame.  He, or she, I can never quite decide, is a nasty piece of work.  S/he stalks about the place pointing the long, bony finger of accusation at whoever is the latest victim of displeasure and heaven help you if it’s you.  If you’re carrying a child and you happen to find out that they have the added benefit of an extra chromosome, BANG.  There you are.  Pointy pointy.  And there is no Get Out of Jail Free Card if the diagnosis is made post birth, either.  Then, instead of the subtle pressure of talk about risk, there is genetic counselling and further tests, but it all comes down to the same thing; just who is responsible, just who is to blame?

The strange thing is, though, that outside the world of the medical diagnosis, out there where most of us go about our business, the Blame Game works in a different way.  That finger, that nasty, long, bony accusatory finger needs no label to attract its notice there.  All it needs is a quirk, or a difference, or those moments when you tear your hair out in frustration that the child just won’t do as it’s told and it starts to wag.

Can’t cope.

Depressed.

Bad Mother.

And before we know where we are, we are fingering the labels again.  Poor child.  FSM.  Pupil Premuim.  ADHD.  Austism.  Naughty.  Even with all the negative stereotypes, the excuses, the lowering of expectations, the effect of over intervention, the censure of the behaviour and not of the child, we riffle our fingers through the pack, to find the one that will stick, to find the one that will let us off the hook.

Teacher.

Parent.

Mother.

Father.

Government.

I wonder what would happen if everyone stopped pointing the finger; if we stopped blaming each other and started working together?

Image taken from Elephant and the Bad Baby by Elfrida Vipont, illustrated by Raymond Briggs.

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?

 

 

 

Zero Tolerance

I never failed anything until I failed my Grade 7 Piano exam.  It still bugs me that I missed out on that piece of paper thanks to a couple of marks and a few more weeks’ practice.  Up until that point I had sailed through all forms of testing with a mixture of oblivion to abandon.  Nothing at school was particularly difficult, and I didn’t really care about times tables anyway.  Well, not until Mr Miller made me write the whole thing out as many times as the number I got wrong in the second year (yes, I am that old).  After that I started to care sharpish.

And then there was Grade 7.

After that, there was the driving test (I still maintain that I was NOWHERE NEAR that parked car, but there you are: the man with the clip board has all the power), and then there was childbirth.  I failed pretty spectacularly at that first time round.

It knocks you a bit, does failure.  There you are, bumbling along, minding your own business and all of a sudden someone points their metaphorical finger at you and frowns.  You failed.  It takes a little while and a good bit of straight talking to yourself to get over it.

Because, you see, it shouldn’t have happened.  Some would say he should never have been born. Someone or something, they think, not to themselves, mind, but directly to you, should have intervened  before it got that far.  Thank heavens there is a new, not-so-invasive test that can sort it all out now, so that we can avoid all those tears, all that heartache, all that worry.  Apparently it’s great because it means that more women will accept the test as the risk to their babies is lower than the risk of an invasive test like an amnio or CVS.  Isn’t that great?  ‘Exciting’ times indeed.

And once we’ve eradicated Down’s syndrome* (NoHeartache Guaranteed), we can get on with the rest, treating all the other failures with zero tolerance.

The thing is, though, that we seem to be creating them left right and centre.  You’d think, after we’d applied the StandardChild label everything would be alright, but no.  It seems not.

Some parents just aren’t doing a good enough job so we must test the children for Failure when they are four, just to check like.

And some teachers just aren’t doing a good enough job either so we must test them again when they are six (or five, depending on when they have their birthday – but heck, they’ve been in school the same amount of time, so it shouldn’t really matter, should it?).

And, if the levels of Failure are unacceptable, we will test them again when they are seven.  And again when they are eight.

After that, if they are still suffering from Failure, we have four years to put in some InterventionsForSuccess.  These interventions can take various forms – we don’t seem able to agree which are the best  – and everything will be fine because we will check them with another test when they are 11.  And then again when they are 12, if Mrs Morgan has her way.

Because this Failure must be eradicated, you know.  A zero tolerance policy on failure and mediocrity has been announced.

Do I need to remind you that there are some things that are out of our control?  Must I say again that there are no guarantees – in life, in education?  Should I really point out to you again that all the testing in the world won’t make you, or your child, happy or successful?  Do I need to highlight a worrying connection between tests?

Do I really need to say that the greatest thing about us, about our human race, is our diversity, our difference, and that being different isn’t a sign of failure?  That maybe, just maybe, our capacity to care, our ability to value what at first sight might look like the most abject of failures, is our greatest success?

Let’s not get so carried away with a false sense of our own power.  Let’s not turn difference into failure.

 

*Add in the chromosomal/genetic abnormality of choice.