Category Archives: Rants

Politicians and Conferences: A review

Yesterday I had a lovely day. I hurried around That London feeling very pleased with myself (apart from the bit when I was squashed into an underground train and there were too many people and my feet were hurting) and generally surprised that I was doing what I was doing and going where I was going and it was actually work.  My head has been full of it all day; fractured impressions I can’t quite order into jigsaw pieces. My thoughts are like broken glass, scattered, rather than collected.

It’s been a busy month. I’ve been to meetings, to conferences (well, ‘summits’ – Head Teacher’s Roundtable and WholeSchoolSend), I’ve observed not one, but two education ministers (if you don’t count December, where my young colleague took photos of Justine Greening from a distance and we lobbied Nicky Morgan up close, and I gave her a copy of my book), and that was work too. I’ve gone from the hallowed halls of Westminster, where the very buildings speak of the timeless solidity of an unchanged State, to the Crystal, a funky glass edifice, modern and futuristic, a building that transforms dereliction into…something else entirely.  It’s been a lot to process, a lot to make into some sort of meaning.

At first I felt despondent. There is so much talk around SEND (well, make that education generally), so much moaning and complaining (workload, marking, planning, Ofsted), so many arguments that circle around the same old same old (I’m not going to bother making a list; pick your own subject, I bet teachers, somewhere, have argued about it til the cows came home), and yet, despite the arguments, nothing ever changes. Or if it does, like the introduction of grammar schools, it doesn’t matter that the profession is, for once, united, it happens anyway.

It’s a topsy turvey strangely powerful yet powerless world.  One where every day we sense the change we bring about in the lives of the young people we teach and yet. Yesterday I met a headteacher who had struggled in her SENCO past with the difference between the pretty looking paperwork and the not so pretty reality it purported to describe. How many of us struggle with the overriding need to satisfy the hunger of the evidence beast, I wonder? We tick the boxes, check off the lists of Things we Must Do, too busy or too reluctant to stop and consider the second story, the one that is woven underneath, and what it means. We satisfy our powerlessness, an attempt to redress the balance, with blogs.

There were moments of disappointment. A minister who said the pretty things, reiterated the rhetoric of inclusion to a captive audience, a repetition of the same old, same old sweet nothings that do nothing, and change nothing. ‘SEND must be at the heart of education policy making,’ he said. I wondered whether he had ever met his colleague, the minister for schools, a man bent on unteachable tests so that more children can get the sort of top grades (despite an exam system that means they are norm referenced) that look good on international performance tables.

Moments of misunderstanding, where the gulf between the profession and those of us who parent children with special needs and disabilities seemed uncrossable, unbridgeable, and I wondered how many more times I would have to tell our story of diagnosis. Moments of passion and anger, when a young man declared in a strong voice that he was a man and a proud one at that, and a mild mannered ex-deputy head railed against a system that tried to pretend the disabled didn’t exist, a forgotten, disregarded kind of human.

Moments of enlightenment when a woman explained her intersectionality, how young people cannot be what they cannot see, and of hope, when a newly appointed headteacher declared her commitment because she believed it was important and the right thing to do.

But it was only when I got home, when I went out for a walk with my mum, in the cold spring air, when we told each other about our weeks (well, it was mostly me banging on; thankfully she is used to that) that the moment of joy returned, when I began to think that the shiny glass and stone didn’t merely cover up the past with an illusion of change. Because, when I watched the evidence session of the Select Committee for Education I realised something; I realised something had changed.

Despite the fact that the minster for schools clearly hasn’t a clue, the committee members have realised something quite fundamental. That ‘Children with SEND’, that homogenised group, the not-quite human children who somehow belong to Other People, are just like them. They are the children who cry at night because they can’t complete the test. They are the children, comforted by their grandmothers, because they think, at ten or eleven years old, that they have not only failed, but are failures. The sort of children who have bedtime stories and cuddly toys. The kind of children who are unconditionally loved. They could, by no small stretch of the imagination, be theirs.

A Letter of Complaint

Heard

Believe it or not, I am not given to complaining. Not officially, anyway. I think it must have something to do with my Britishness; I don’t like to make a fuss. Either that or it’s because I’m inherently lazy. I don’t like to have to exert myself. Or maybe it’s because, like many disabled people who find that bits of the world they are negotiating are just not accessible, it’s easier to simply turn away and take my money elsewhere.

Or maybe it’s because there is always a little bit of me that wonders if it wasn’t, somehow, my fault. Getting the wrong end of the stick is entirely possible. I’ve always got half my mind occupied on something else; I live so much in the present moment that things like the start and end of school holidays or bills have a tendency to creep up on me. I’ve damaged my car in the past because keeping an eye on baby meant that I wasn’t keeping an eye on the gate post.

When you have a disabled child, a baby with Down’s syndrome, bearing the blame can get to be a bit of a habit. Your very existence is an insult to some people. The simple act of turning up and assuming you can take your place in the ordinary world, just like everyone else, is enough to get you into trouble. You get used to the difficulties that including you and your funny little family causes other people being your fault.

I find myself wondering if this continued experience of blame hasn’t got a major part to play in my reluctance to make a fuss.  Oh, I don’t like conflict, I’m the first to admit that. It makes me uncomfortable in whatever guise it takes. I’m usually the first to say sorry, the first to seek to make amends.  It gets tiring though.  To constantly live with the cognitive dissonance of knowing that you are actually in the right, that there are even laws that exist to protect you and your child and whose existence has firmly put you there, both feet on the ground, the right side of the line, and yet have people, especially those in positions of power telling you that you are, in fact, in the wrong.

You didn’t ask early enough.  You didn’t tell us in time that you would be coming along.  You asked in the wrong way; you demanded (rather than begging on bended knee).  You were rude. You were weird, strange.  And then there is him.  He was challenging.  He was naughty.  He was inappropriate, difficult, dangerous and wrong.  And by association, me: bad mother.

It’s funny when you think about it.  There is a whole industry out there, raising money, giving grants, running training courses, paying for helpers to make the world, and its activities, accessible for disabled people.  And at the same time, there is a whole load of other people, working away to make life as difficult as possible, to throw spanners in your way.

And you know what I reckon?  They don’t do it because they hate disabled people or their mothers or their families.  They do it because they can’t bear the fact that they got caught out making a mistake, getting something wrong, being the same as all the rest of us; human.

You know, when I make a mistake, given the chance, I’ll say sorry.  I’ll admit it and apologise.  I don’t feel the need to attack someone else in order to keep the world thinking that I’m perfect, that I never make mistakes.  Because, believe you me, one day, someone articulate, with good friends and good advice, despite their disability, will come along and show the rest of the world what you did, and they will all see that the pretense of perfection was exactly that.

Demonised

I don’t always make good decisions.  There.  I said it.  Sometimes I make decisions in haste, and live to regret it, sometimes I take my time over it, make lists of pros and cons, and I still get it wrong.  It’s almost enough to put me into a state of permanent stasis.  Almost, but not quite.

Jobs are one of the things it is possible to get spectacularly wrong.  Unlike a pair of shoes that rubs, or that doesn’t quite fit when you have your socks on and you try them on at home, or the top that you thought looked so great in the catalogue, but when upon your self makes you look not unlike a deeply unattractive and shiny sausage, straining at the seams in a most unseemly way, a new job, and especially a new teaching job, is not the sort of thing you can take back, receipt in hand and ask for a refund. I’ve done it more than couple of times now.  I’ve taken a job that, on the surface, ticked all the boxes it was possible to tick, but turned out to be one big fat mistake.  You’d think I’d learn.

Sometimes, though, the consequences of my mistakes aren’t as immediate as a bad fashion choice or finding myself as the wrong person in the wrong job.  It takes me a while to realise that the decision I made, the leap I took, went in a direction that wasn’t the right one for me.  I should have listened more carefully to my dad when he went on (and on) about disco deafness and I carried on (and on) going to discos and gigs.  I am reminded of the consequences of my actions every night when, instead of the telly, or the soft clicks and creaks of a house settling itself down for the night, I am washed with the crashing of the sea, the squealing and ringing of tinnitus.

I suppose I could blame my dad for not buying me ear plugs, or doing something to reduce the volume in my headphones.  As far as work is concerned, I could blame the economy, or better, politicians, for forcing me to work to help to pay my mortgage and support my family financially, or the pressure from family or friends to live and work in a specific place, thus narrowing my ‘career’ options.  I could blame my bad shoe choice on the traffic warden, or demands for an early lunch, hastening my exit from the shoe shop without proper consideration.  I could blame every other thing, and every other person for my choices, if I so desired – that’s what everyone else does, after all.

You see it all the time, this shift of responsibility from your own shoulders to those of someone else, especially when we make a bad decision, or one we suspect might be, well, suspect.  I forgot my homework?  The unicorn ate it.  I broke the prize ornament?  It wasn’t me; my brother made me do it.

But while the childish excuses for forgotten homework (I was in the middle of a really, really good book and I just had to get to the end) or smashed ceramic (the game of balloon tennis was especially exciting and we got carried away) might be essentially harmless, the older I get, the more I learn, and read and listen to the justifications for action in one direction or another, the more I am disturbed.

Because it doesn’t seem enough, to shift the blame from our own shoulders, not any more, not for us adults.  Instead, we must justify our actions in no uncertain terms.  It’s not enough to push it away from ourselves and point it somewhere else; we must make monsters of our scapegoats too.

‘It’s the parents!’ we declare, when the children in our classrooms won’t do as they ought.  ‘It’s a lack of discipline at home!’  Or morals, or values, or boundaries or bedtimes, or whatever else we think they are lacking.  And, before we know where we are, they become easy to ignore, the imperfect adults on the other side of the school gate, to override as almost incidental in the process of bringing up baby.  We are the professionals, after all.

‘It’s the children!’ we cry into our glasses of wine and our social media at the end of the day, retaining our profession deep into the hours of the night, or the weekend, or the holidays.  If they won’t do as we want when we want and how we want there must be something wrong and OUT! OUT! OUT!  No excuses.  Our way or the highway, and if they choose the highway it’s because there is something wrong with them not us.

And for me, as the mother of a disabled child, with Down’s syndrome, so easily detected it is part of a national screening programme, something to be eliminated, like cancer, I hear another justification.  ‘It’s the disability,’ we whisper (or publish in newspapers, social media or on the telly).  ‘They would have been condemned to a life of misery and suffering if we had carried on with the pregnancy.  Their disability would have been so great that it would have been a life not worth living.’  (You can also find this narrative in mainstream novels and big budget films.)

I get it, I do.  No one wants a hard time. I don’t want a hard time.  No one wants to make their life intentionally more difficult, more full of hospitals or responsibility than anyone else.  But it shows me something.  It shows me that an exaggerated story, told enough times by enough people can start to be seen as the truth.

It shows me that when we shift the responsibility for our own decisions onto the shoulders of someone else, when we over-egg the pudding in order to ensure that we come out of it looking good, spotless and shiny, no moral qualms allowed, no doubt, no admission of our own human frailty, when we do someone else down in order to make ourselves look good, what happens is that children like mine end up cast into the pit, like demons.

 

I know it will seem like this post is inspired by recent education-based news, and I have dug it out of the drafts vault in part because of what I have read recently, but it’s been one that has been brewing for a while and was kicked off by this:

http://www.mamamia.com.au/terminate-down-syndrome-pregnancy/

I just wanted to make that clear.

A world without downs

So, I posted this thread on Twitter a while back, while I was waiting for my daughter to sing in a concert, and, well, I thought I’d reproduce it here.

You see, the thing that upsets me I think most of all in this #worldwithoutdowns thing is the way that the problem seems to be all about the person with Down’s. My son isn’t a problem. He isn’t sick with it. He doesn’t suffer with it, and yet suffering seems to be the main reason why people decide that a baby carrying a little extra isn’t viable, and why they are advised to start again.

And that’s when I start to get angry. I start to feel that rage inside that burns and makes me stamp my feet and cry that there IS an element of suffering – but that it’s ME when nobody helps me.

When nobody draws alongside me and my son and asks us and asks us what we need so that we can join in the everyday things of life.

He suffers when people laugh at him, or when they can’t seem to see beyond his disability enough to bend their own inflexible attitudes even just a little bit because that’s the way we’ve always done things here.

And I don’t like living with sadness. I don’t like living with grief and loss – but the thing is, if I don’t I subscribe to the idea that we can wipe the tears away as if they had never been, doesn’t that mean that what I want is to live a plastic, a sanitised life? Doesn’t that mean I am afraid? That I am pretending to myself that life is not as it is?

No, it’s not what I thought it was – but I wouldn’t be without it, not for the world. Because without the shadows, without the pain of loss or all those negative emotions that assault me regularly, would I ever know what joy was?

A #worldwithoutdowns isn’t real. A #worldwithdowns is life.
Ends.

But, after having this post in my drafts for about a week, I think I had a deeper reason for getting it out and putting it here in its entirety.  It’s because I have been thinking about selection.

I’ve been busy with my new job (very exciting) and this has made me busily think about selective education.  Our government wants to bring back selective education in the form of grammar schools, you see.

Now, I am not alone in thinking this a bad idea.  Given what I see in the community around me I don’t see schools open to the ‘brightest’ but the richest.  I don’t see children who show everything they are capable of at 11 years old.  I don’t see more choice; I see fear and worry and unseemly scrambling over the leftover schools when the selection has taken place.

But more than that, I see a disturbing pattern.  I see adults who seem to have forgotten that they, too, are human; that they, too, are subject to the whims of fortune, and that they can no more escape their messy reality, the pain and tears as well as the joy and laughter, as I can.  Adults who think that they can somehow select the children they want, the perfect ones (or whatever constitutes perfect these days), and discard the rest, as someone else’s problem.

We tell ourselves we can select for success, but at what cost?  What price are we paying for pretending?

The Shield

I wanted to tell you about the photograph at the top of this blog.  It was taken, by me, some time ago now, when I was on a holiday with some other families whose children also have Down’s syndrome.  What I wanted to imply, when I chose it for the header, was not so much a sense of doing the same things differently (we are riding on recumbent bikes – more strenuous than you would think, and more difficult to perform a handbrake turn with than we imagined), but the idea of the journey.

When I started writing, I wanted to tell you about the journey into parenting that we have taken; the similarities with the ordinary population, and where we differ.  I wanted to share with you both the joy, and the pain, that comes along with Down’s syndrome, to bust some myths and, maybe, to help someone who was a little further behind.

You can read my advice for new mothers here.

Something that I began to realise, pretty early on in the life of this blog, was that what I had to say was particularly relevant to educators.  I was so often mis-interpreted by them, so often shut out because of misunderstanding.  As with the children we teach, we teachers behave differently towards parents when we have more of a clue about where they are coming from.  First impressions give way to knowledge.

You can read a post on what it felt like to be shut out of Sam’s education here.

You can read a post on the difference having a child of my own, and that child having a learning disability has made to me as a teacher here.

You see, the thing that many people don’t understand, because they have not had this experience, and because experiences around childbirth are shrouded, private (posts on loss here and here, and my story of what it was like when Sam was born here), personal and unshared beyond the coffee morning and the toddler group, is not only the effect of traumatic birth, but the aftershocks of being told that there is something wrong with your baby an how these shudder through your life.  They ripple through everything, especially in the early years, and in those I include the years of primary school.

Now, I’m not saying that this is peculiar to Down’s syndrome.  I share many experiences with women I have met who tell of the rollercoaster that is childbearing.  But there is something about it, there is something about the road we travel that I see echoed again and again; a reclamation of joy, a declaration that their baby is not a monster or a risk, but a baby.  A person.

The thing about it though, is that we all travel at different rates, and we all have different skills and attributes (as do all parents) that help or hinder us on our way.  For me, I was physically weak for a long time after Sam arrived.  I had home visits from a lot (A LOT) of health professionals checking that I was OK, that Sam was OK.  We were on first name terms.

We got on great – but I knew why they were there and it wasn’t out of the goodness of their hearts.  Traumatic birth + health problems with baby + a load of other things is a recipe for post-natal depression.  I was cared for, protected, watched over – and I am grateful.  Sam and I were able to pick ourselves up and get on with enjoying life, in part, because they were there, shielding me.

They allowed me to construct my own protection, to blow a bubble around my family that kept the cold hand of fear away.  Would he ever walk?  Would he ever call me mummy?  Could we ever have a conversation?  Would he need heart surgery, tube feeding; would he die?  I put these questions behind a cell-thick wall, and there they stayed.  For years.  The future was not known, said I.  I stamped it into the pavements and the footpaths near my home.  I’d smash anyone’s crystal ball.  Fortune telling?  There ain’t no GCSE in that.

Some people felt it was wrong.  I was setting myself up for disappointment, for a fall.  I ought to know the truth of the matter and they regularly, or so it seemed, pricked my bubble.  They reduced the thing of beauty that I had constructed, not tough like a tortoiseshell, but fragile, iridescent and shimmering, almost a mirage, to stinging tears.  I would find myself in a state of unprotected rage while I painstakingly blew it again, while I calmed the storms and got on with life.

Others seemed to think that I should somehow live in the bubble forever, that I should be permanently trapped within the assertion that it isn’t so different, that once his needs were met and adjustments made there was no reason why he couldn’t go to Oxford, or, as in Australia, that somehow he might be ‘cured’, or grow out of it.  The implication being that his congenital condition is minimal, negligible, as if, somehow, his needs and diagnosis could be separated, like the threads in twine; that mothers like me should have to justify those needs again, and again, just in case he was faking it.

I haven’t written about the day I was made his appointee, because I am still trying to come to terms with it.

Now, though, I find that I am not blowing bubbles any more.  This is not to say that I don’t need the protection – I do.  Life with Down’s syndrome is just as fearful, just as challenging, more so in many ways, as it ever was.  But now, my energy is not so much given to the carefully constructed walls of the protective bubble as the walking of a tightrope.

You see, I still believe that the future is not fixed.  So that I can get up in the morning, and make the packed lunches, check the teeth are brushed, and all those other things that mothers do before the working day begins, I need to believe in change.  I, like every other mother, need hope; for today and for tomorrow.

But I am not a fool.  I know that hoping isn’t enough.  I know that, while I celebrate the individuality of my son, his beautiful smile and his infectious laugh, he lives his life within the confines of a syndrome.  He cannot escape it.  It cannot be denied.  He needs help and so do I.

My friend Sarah calls it Putting On the Big Girl Pants.  You can read her wonderful blog here.  A while ago, when we were discussing responses to Sally Phillips documentary, you know, the one that asked whether we want a world without Down’s syndrome in it, we talked about the action that we want to see for adults with disabilities – and not just those with Down’s syndrome.  We talked about the difference between the glossed early days of hope and the pierced today of sixteen years later.

You can read about what fear of the future feels like here and here.

When you look at the future from where I am standing, the importance of early intervention, of support in place right from the start, an assessment based on stark facts, informed by a medical diagnosis, rather than cynically taken from behind the bubble, looms large.  Waiting and seeing and crossing your fingers isn’t good enough.

But, you know, she, that young mother with the baby on her hip, she doesn’t need to do that.  She doesn’t need to walk the tightrope, to perform the eyes wide open, heart in the mouth balancing act between gritted acceptance and fierce hope.  What she needs, as the mother of a baby, is those who have walked before; she doesn’t need the deceiver.  She needs the shield.

img_4856I’ll leave this here while we think about the realities of Down’s syndrome, and what this means, practically speaking.