The One Way System

I’ve been reflecting recently on our decision to send S to a special school. At the time, it was a no brainer. The moment we walked in and the headteacher said to us, “of course, you do understand that he won’t have his own 1-1 TA,” we knew we had come to the right place. S, of course, preferred the mainstream school next door, where the room he had explored had computers that came up out of the desks. He was, I am sure, convinced that every day there would be a day of games and play, while everyone around him smiled and told him how cute he was (he was, still is, if I may say so myself).

We had been thinking about which school he should attend for some time; when I say ‘breaking my heart over it’ I don’t think it would be an exaggeration. In the world of Down’s syndrome parenting, whether or not your child goes to a specialist school or a mainstream one is a major point of debate. After a diagnosis experience still common to many, I believe, one of sad, solemn faces, apologies and the vague, unspoken inference that the baby you hold in your arms doesn’t measure up, is some sort of alternative, inferior creature, the inclusion of disabled children in mainstream institutions such as schools goes a long way to healing this wound. What would sending our son to a special school say about how we saw him? Would it mean that we were giving up? That he, and we, were failures?

And, like all parents, we worried about who his friends would be. In a mainstream setting, my experience as a teacher rang warning bells. Would he spend his school days swilling around in bottom sets, with all that that entails? Or out in the corridor, present but isolated? Would he be able to spend time with the children he would learn the best habits from – or would he be forever out of their way, removed from them by either the presence of a permanent TA or the effects of setting? If he went down the special school route, what would he be learning from the other children there? Shouldn’t he be with typical kids and learning typical things from them? It was a spiral of indecision and I’m glad that one visit settled the matter. We walked in, had a look around and all our doubts and worries fell away. He would be OK, and that school would do a good job.

I guess the thing that I am stumbling towards is the thing that I, as the mother of a disabled child, forgot, and the thing that people who do not have disabled children often mention (and which I, up until recently, have dismissed out of hand as patronising); that spending time with disabled people, or in this case, disabled children, is good for us, that we learn things, all sorts of things, by doing so.

I had always seen this in terms of the typical population, and underneath my skin-deep agreement there was always the resentment; that my son isn’t here as an object lesson in learning to be patient (or something) for other people. That he isn’t an inspiration lesson and that he exists, just as himself, and that is exactly how it should be.

But.

I forgot something, and I forgot something important.

I forgot that, as much as he could learn from typical people, he could learn from disabled people too. He could learn to accept his own difference, by accepting it in others; he could learn to transcend that strange kind of narcissism that assails a person who has a lot of attention, all fixed on them, you know, the appointments, the meetings, the endless, endless questions about what he wants and how he likes to be helped. He could learn to be the one who helps, and be empowered by doing so. I forgot that all the benefits of being educated with disabled young people were true for him too – a disabled young person. I forgot that it wasn’t one way.

It’s a good thing education’s a long game, or I’d be jiggered, frankly.

Advertisements

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.

Welcome back, the weekend wash

It’s the start of September and I, like my teaching colleagues, am gearing up for the new year by having recurring anxiety dreams (mine involve no one listening to me) and wondering how, after a summer of baguettes, I am going to fit into my work trousers. I have browsed my favourite clothing websites (lovely) and completed as much planning as I can before the starting gate opens (mummy, you have worked for FAR too long today). I have bought the shoes, checked the bags, lunchboxes, pencil cases and stationery supplies, looked at the forms (they are under the fruit bowl, their clamour for attention getting louder by the day), attended all the appointments, fetched the prescriptions (but not visited the hairdresser, haven’t had time for that) and, luxury of luxuries, read five books (didn’t really like The Time Traveller’s Wife, to be honest).

And now, the Saturday before it all starts again, before we put our collective family feet on the treadmill to Christmas, all of us fit and healthy all at the same time for the time being, in that moment of pause while we who are about to go back to school take in and seem to hold a simultaneous breath, I have depressed myself with a reflection upon the state of my household laundry.

Unlike many others of my ilk, I have to admit that I don’t overly mind doing the washing. Leaving aside the anxiety and angst it causes me when my beloved puts my best things in on a hot wash, I am really relatively happy to be in (mostly) sole charge. It’s quite therapeutic, especially the clean bedding bit, and it means that I always have a good idea of who needs new socks and pants, and who has grown out of what. I even know which bits of clothing belongs to which person. I don’t particularly mind the ironing – although I prefer it when my mum does it. She’s so much better at it than me, but more, the act of chatting while she does it brings back echoes of my younger self when I used to hang around for hours while she transformed seemingly endless stacks of shirts from crumpled rags to pristine uniform.

The only part of the process I actively don’t like is the putting away. By the time I’ve got to sorting out six piles and putting them on the bed (one for each of us and one for the airing cupboard) I’m bored. As a consequence, the washing can stay in suspended animation for days, sitting in silent tower blocks in my bedroom or accusingly in the kitchen, waiting for someone to complain that they have NOTHING to wear, not even a sock.

One of the (many) nice things about the long summer holiday is the sudden ability I have to space it all out. Apart from those moments when you return from a week away and you have everything in the entire world to wash, you can take your time, do it in dribs and drabs, set your own timetable. Nothing needs to build up, or wait for the Sunday evening session of sorting out and putting away, the sweaty race against the clock to get everything done before Monday morning comes around again. And that’s what I thought, as I pegged it out (usually a cause for celebration, especially when you can get all the towels on the line as well as the bedding and everything is clean and nice and fresh) this morning.

Living through the school terms, whether as a parent or a teacher (and a parent) has that quality about it that wears us all out – careful about workload or not. If you’ve got a private life (and who hasn’t) you will need a survival routine there too and preferably one that’s shared.

(One day I will write a blog about modern parenting which seems to require double the economic contribution while at the same time demanding one partner stays at home to service the needs of the rest and make a comment about how constant homework and clubs and running around after your kids encourages the idea that they need a support team of their own.)

The Promenade

When I was 17, my mum took me to a prom concert at the Albert Hall. Being from Devon, we made a day of it; she took me to see where she went to college, bought me a t-shirt from some sort of brown paper bag, organically woven, rustic varnished floorboarded shop, you know, the sort that you only find in London (or on Gandy Street in Exeter). I wore it a year later, when I went to college. She’d got us seats, right at the front. I remember watching, fascinated, as the percussionist sweated through the soundtrack from a TV show, gaining a round of applause, all to himself. My uncle, a long standing friend of my dad’s, dashing off to get us drinks in the interval, the race to catch the last train home. A hot summer day that sits in my memory, part of my cultural upbringing.

I’m not quite such a fan of theatre as my parents, it must be said. While my childhood was full of visits to the Northcot, Plymouth Theatre Royal, the Haymarket, my own children are much more schooled in the way of the castle and cathedral, seasoned visitors to museums and Site of Historical Significance. This is not to say that theatre and musical culture isn’t something we deem to be unimportant; just that, for us, it is more difficult.

There’s something about the darkness, the tension, the are they pretending or are they real that turns what should be an enjoyable experience into something that…isn’t. Rather than pleasure, it so easily becomes struggle. An attempt to stay rather than participate. Apart from anything else, taking a family of five to the theatre or to a concert isn’t cheap, and certainly not if you add in the cost of transportation and time. For a long time, it hasn’t been worth it.

But last year there was a change in our circumstances. We moved house and suddenly, the idea of going to London for a show wasn’t quite such a pipe dream. For some reason, I can’t for the life of me think why, I made a discovery. A prom concert, something that was impossible for the likes of me and mine became something real. Relaxed. A lunchtime performance, lights on, a social story, break out spaces and hand dryers turned off. Even a short video to show us where to go and what to do. I spent much of the performance with the sort of lump in your throat and moisture in your eyes that won’t quite let you speak. I can’t have been the only one. The mother who chased her son across the stage; I recognised her quiet sense of determined desperation. The girl the conductor gave his baton to so that she could lead the orchestra from the pit, conducting a piece she knew well and loved, she still has the power to call an unfathomable emotion from the well-spring of my heart.

Without that experience, the rules relaxed, what was happening and what it meant spelled out clearly, in a straightforward, no nonsense way, even down to the musicians, wearing different coloured t-shirts according to which part of the orchestra they belonged, we would never have been able to go again. Because last week, that’s what we did. We gathered up an even larger number of family and off we went, access lines to railway and hall called, special seating arrangements for disabled guests made.

As I sat there quietly, lights dimming, waiting for a fantasy, an imaginative weaving of music and movement, words and song, to start I thought about how much it is assumed that we, the audience, will understand. How much it is assumed that we, with no preparation, no explanation, will be able to do, how we will be able to bring together, from the snippets of our experience, to make an evening at the Albert Hall a success. A children’s performance – and a very good one – a serious introduction to some serious classical music. An important addition to a cultural upbringing. A step on the road towards something with even less support for understanding.

I don’t know though. The one that went before. The bounce. The unpredictability of the audience. The love and joy at sharing their musicianship that came from the orchestra in waves as they swapped places during the Soul Bossa Nova, how we sang along to ‘Happy’ (sung by one of the Strictly singers). There was a real-ness to it, a raw power to the performance of disabled children from a special school who played alongside the professional orchestra. There it was, almost touchable in its intensity; the knowledge that music isn’t simply a matter of ‘the best’, but is an experience that should be shared, and that the sharing goes both ways.

What about the rest?

It’s been a busy week in edu-world. Some of us finished (at long last) on Wednesday, some of us have a stack of work to do (and, somehow, entertain the kids and the rest of the family, sort the kitchen cupboards out, unpack the last of the moving house boxes, pack for a holiday etc etc etc) left over from the end of term (I reckon at least two solid weeks – I suppose it could be worse, at least I don’t have a book deadline looming), and many of us have been taken up by the Education Select Committee report into the state of exclusions. Personally, I haven’t had time to read it (too much work to do – ah yes, the irony of the DfE publishing guidance on how to manage your workload this week has not passed me by), but I have, in those moments when I have glanced at edu-twitter, caught some of the ensuing Hot Debate.

Exclusion is a necessary act – I’m not going to get into a debate about that – but I wanted to respond quickly to a question that is asked repeatedly, both in person and online: what about the rest?

Of course, as a teacher (and indeed, as a mother), the question of how you balance the diverse needs of the young people in your class (or family), and remain fair and equitable, is one that occupies a lot of thinking (and handwringing) time. It’s impossible to give everyone the same (and they don’t need it anyway), and some children, due to the nature of their needs (often expressed in their behaviour) do gobble up more attention than the others. Any parent who has gone through a medical crisis with one of their children will know this, too. It’s difficult, and there is no easy answer. But, while I might find the question hard to answer in terms of my parenting (there is always a ton of guilt, always, and always the pressure to neglect myself or my husband), the teaching one is not so tricky.

The thing is, you see, that children learn all sorts of things when they are at school. Some of the time, it’s the thing you (the teacher) actually planned for them to learn. This is a cause for celebration. A lot of the time, it’s incidental, messy. They learn to play all manner of playground games that pass, unseen, from generation to generation. They learn how to deal with it (or not!) when things don’t go their way. They learn that it hurts when they run into a pole/get thwacked with a wet football/trip over on a gravelly playground. And, if they have someone different in the class, be that social class, family background, ethnicity or disability, they learn that no one is the same, that people are people and, hopefully, that when there is difference, there is nothing to be scared of, that there are a million different reasons to be kind.

So, when I am asked this question, I remember my son. I remember his 11thbirthday, the children who came, every year, to every party (and told me off with accusatory glances when there was a film and not games), and who greeted the news that he would not be moving up to the same school they were heading to in Year 7, that he would, instead, be going to the special school next door, with shock and disappointment. I remember the way that his teacher contacted me, how she made a special effort, to let me know just how disturbed, how ruffled, were the rest of the class. I remember how, for years, when they bumped into him in the street, they met him with hugs and high fives. How the adults showed the children how to be.

Of course, I am writing about a particular circumstance and a particular person, and, I am sure, people will say, ‘but of course, he’s so gorgeous, it’s not the same’, to which I will counter with a reminder that he is, and was, no angel, no beautifully behaved ‘good’ disabled child. Where Sam goes, disruption often follows.

Sometimes, I think we all need a bit of perspective, a bit of time to sit and think, to reflect on our own personal circumstances and stop making blanket, catch all statements. Somehow, we need to get to a point of agreement, to get to the point where we have the “serenity to accept the things [we] cannot change, the courage to change the things [we] can, and the wisdom to know the difference.” Reinhold Niebuhr