Tag Archives: SEN

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.

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The Primary Lie

Or, things ain’t what they used to be.

I went to a parents’ evening the other night.  It’s not usually something I look forward to, seeing as there is too much hanging around sitting on too-small chairs for my liking, but I was keen to go to this one.  This one was my first as the parent of a mainstream secondary school child.  And I was impressed.

The chairs were the right size, there were plenty of people shuttling around who I knew from toddler group days (oh, my, haven’t they grown), the heating was on nice and high (a little too high in one room) and, joy of joys, not every teacher was younger than me.  (When we went to have a look round it was rather disconcerting to find myself a good fifteen years older than some of the young whippersnappers who have the temerity to work there.)  And there, sat in the corner, demonstrating a refreshing lack of respect for the data, was a Proper Teacher.  A proper teacher with a proper tweedy jacket and a proper beardy beard (none of this bushy business the young folk seem so inexplicably fond of for this gentleman) who taught a proper subject.  Mine.

The conversation between us dashed about, leaving my younger son somewhat squirmy and my elder nonplussed and I got up from the table feeling like I had reconnected with my tribe.  Here was the sort of teacher I recognised.  His enthusiasm for his subject, and his love of teaching children, in particular ones, like my son, who got his jokes (although he sees nothing funny in calling him Mr T), fizzed from him.  Here, thought I, here was the Real Deal.  This man would carry my son, and other children like him, on a journey into academic study on the coat tails of his infectious enthusiasm.  They would be inspired.

But it was more than that.  Every single teacher gave me the strongest impression that they knew my son.  Not only did they know who he was, he wasn’t a faceless speck amongst the many floating through their classrooms on a weekly basis; to them, he was a person with strengths and weaknesses that they knew and cared about.  It was both a pleasure and a relief.

You see, those big secondaries are just so different to Primary.  Sometimes I feel as if A has stepped onto another planet.  There, he shuttles from room to room, here, in my world, they are based in one, with little to no chance that they will lose their pen or their ruler, or anything else they need for learning.  There he has access to specialist classrooms and teachers with in-depth knowledge of their subjects that we just don’t.  Our modes of operation and our specialisms are, well, different.

In primary it doesn’t take til half way through the school year before we have the evening that lets the parents know how they are getting on, whether there’s anything we ought to be communicating between us.  We get to know them so much quicker, so much better in primary.  I mean, as Teachers of Everything, we see the children in a much more holistic way.  We’re the ones who sort out the playtime squabbles, make sure they’ve eaten their lunch, direct lessons on ‘how to be good friends’.  We make connections with their learning across the curriculum, from Maths to Science to Music to English; we see it all, we are in charge of it all; we can comment on it all.

Well, apart from PE.  We might not teach that if it falls in our PPA time.  Or Science, or D&T.  Or French.  Any of those defined subjects it’s easy for an unqualified teacher, but specialist nevertheless to take.  Like Music, if we have a dedicated music teacher, because playing an instrument doesn’t seem to be a prerequisite of a primary life any more, what with all that you can do with the internet and an interactive whiteboard these days.

Oh, and those children who go to another set for English and Maths.  We can’t really talk about them because they aren’t in our set.  What with sorting our own groups out, we haven’t time to go chasing round the school finding out what they’re doing for other people and what they think of them, no.  Or the children who go out for an intervention with the TA.  It’s a pity that we don’t get much time to talk about what she’s doing out there all that time, but, after all, she’s not paid to be here before or after the children, even though she does, and what can you do about that?  What matters is that the children are getting the support, doesn’t it?

Oh, and there’s those ones who go out to work with her where it’s quieter and they can get more attention, it’s so easy to overlook them, you know the ones with SEN.  I mean they spend so much time out there and the TA is so capable, so experienced (she was here years before we were, back in the days when a classroom assistant washed the pots and put displays up), she knows them so well, she always gets such lovely work out of them and it leaves us classroom teachers more time to devote to the rest of the class, to give the others the attention they, too, deserve.  The classroom is so nice and quiet when they are out with her, I sometimes forget they are there, the rest of us are so busy.

But still.  We still know them better than they do.  Don’t we?

The Crystal Hedgehog

I know the new SEN Code of Practice has a lot of problems waiting in store, and @jordyjax has written eloquently about the lost children her primary PRU (pupil referral unit) serves, who nobody seems to know what to do with and the perfect storm that is brewing there, and there are swathes of children who will no longer come under the code who, equally, no one seems to know what to do with, but there is one thing in it that I kind of like.  I like the way that it seeks to bring together the worlds of education, health and social care (whether this will actually work is anyone’s guess).

You see, there is this thing about learning disability that gets my goat big time, and if you’ll excuse me for a few hundred words, I’m going to use the lens of Down’s syndrome (because that’s what I know about) to explain.  Bear with me.

I fell into an interesting conversation via my favourite social media outlet with @lollardfish (David Perry, an academic currently working in the States who also has a child with Down’s) where we bemoaned the two dimensions that children (and subsequently adults) with Down’s syndrome often find themselves in.  Like the concept of femininity, the idea of Down’s syndrome, the way we work it out, describe it, in our attempt to explain it to ourselves, locks us and them in to an unreal state.

There’s the angel story, where children with Down’s exist in order to teach us to love, or to have patience, to slow down, to look at life in a different way.  Then there’s the saviour story, where the child who needs so much saves us from our selfish selves.  And there’s the baby.  Always the baby.  The acceptable image of Down’s syndrome.  Beautiful, fluffy, cute, clickbait.  I find it interesting on an academic level, almost as much as I find it infuriating on a personal one, how close these images relate to ideals of women over the ages; passive, redemptive, flat.  Other.

There is an element to Down’s syndrome, and the stereotype that people hold of it, that continues this narrative, almost without us realising.  ‘He’ll always be with you,’ one old lady told me as she admired my baby (and I thought, ‘oh, blimey, I hope not!’), unconsciously articulating the idea that, somehow, my boy would never grow up.  An infant forever.

But, contrary to public opinion, Sam’s development from a child into a young man, like all the children I have ever known, or taught, is happening and it’s not a linear thing. He likes to play with cars, and yet his voice has broken.  He is increasingly capable of staying up late and sleeping in, and yet at the same time is reading and understanding stories at the level of a much younger child.  He is interested in girls, in his emerging sexuality, and yet he can’t quite tell which ones have grown up and which ones haven’t.  He is a glorious mixed up mashup of a person; the very last thing he is is one dimensional.

But.

While I might see him as multifaceted as the hedgehog that sits on my mantel shelf (if was a gift, and a friendly reminder of my 80s childhood), I can so easily see that other people do not.  Other people, who make working with those with learning difficulties their business can so easily turn him, and people like him,  into a Flat Stanley.  As flat and stuck in a state of permanent childhood as the boy in the book.

My grandma had one of these.
My grandma had one of these.

I first came across the phenomenon when he first started school, and other people did things for him, things that I had spent time and care teaching him to do for himself.  Now that he is in special school I am revelling in blessed relief from outrage, but I know that it isn’t, and is rarely, far away.  I know that his school will only be able to have him until he is 16 (so we’ve got two-and-a-half years left), and then we will have to search again for somewhere else.  Another someplace special.

And I have developed quite a shopping list of the things I want when we find it.  I want to work in partnership with people who believe in my son, not have him in their class out of some sense of civic duty or pity.  I want people to work with my son who don’t sit him in the corner with some crayons or an iPad or a box of cars, who don’t take away his choices by prompting him too soon, or waving his arms about in an attempt to make him sign in assembly before he’s had a chance to react or process his situation, or fetch a ball for him and teach him an altogether different lesson about himself.

I want my son to work with people who understand the idea of agency, by that I mean the decision making we adults take for granted, and how those living with disability have so little of it. It is an accepted state for a child, although what with the continuing revelations of historical child sex abuse, one that we seem to be questioning, that of being excluded from decision making, to be the passive recipient instead, but it’s not for an adult.  I want people to work with him who won’t jump in to answer for him, to prompt him too soon before he’s had a chance to think, to give him the dignity of making decisions wherever possible, as they would any other young adult.  When I think of my son, and the difficulty people seem to have in seeing him for who he is, in looking beyond the stereotypes, I fear.

I want my child, my children, to be educated and grow in a system that is flexible enough to give him the education that he needs, not the one that is the ever bouncing political football, that gives children the time and space they need to grow into the people that they are, not forces them through some sort of standard-person sausage-making machine, or labels them with an inappropriate and limiting stereotype if they don’t fit.

I want to work with, and have my son work with people who see the totality of who he is, who pay as much attention to the development of meaningful friendships as they do to his phonics and spelling.  I want to work with a profession, I want to be part of a profession that isn’t too tired, or too busy, or under too much pressure, and isn’t surrounded by so many competing demands that they can’t see the wood for the trees.  I want to welcome people into his life who are keen to give him the skills he’s going to need as he makes his way into the adult world, be that information about sex or spots or using the bus or paying the bill at the till, because he won’t  be a child forever.

I want our schools, our system, to be human.

 

 

How are we going to make this happen?  Join the debate.

Battle Weary

There is something strange happening in Edu World.  After a (more than) decade long drive towards the inclusion of children with learning disabilities, or special needs if you want a broader term, something unexpected has cropped up.  After years of special school closure, the acceptance and education of the vast majority of special kids in mainstream schools, the parents of said kids, and the children themselves, it has to be said, are voting with their feet.  Like me, they are sending their children, not to the local mainstream, but to the (hopefully) local special school.

Why is this happening?  These parents, and their predecessors, have fought long and hard for the right of their children to take their places in the mainstream world, to no longer be deemed ineducable, to, simply by their presence, do a bit of educating of other people themselves, to be accepted and acceptable.

First up, training.  Let’s be honest here.  Mainstream teachers just aren’t trained to deal with complex needs in their classrooms.  Classes are big, my first class was 33 children, and children like mine are a challenge.  They are a challenge in terms of teaching them academically, in terms of their behaviour, in terms of the way they change the balance so much in the class, and that’s before you get to the accountability measures that mean high stakes testing and jobs on the line, and progress and all that jazz.  Classrooms with 30 children in them and a prescriptive national curriculum dictating what you teach in them are not flexible places.  They are a bit like ocean liners.  They take a long time to turn.

Resources.  Many of our school buildings are old and difficult to negotiate.  I went to a school that was 100 years old in 1980.  I’ve taught in two storey Victorian buildings (where the boy who was recovering from Leukemia had to have a person with him so that he could get to the music room), mobile classrooms with and without their own toilets, in and outside classrooms in varying states of repair, and not one of them, not one of the crowded spaces that are my stamping ground, has been set up for someone who might need a hoist to get out of a wheelchair (even though there is a disabled toilet with the PE mats stored inside it).  Ok, that’s an extreme example, but you get my point, I hope.  Physical adjustments can be hard to squeeze in to your common or garden classroom.

The yearly nature of schooling.  Like it or not there is an element that is all about surviving the year.  So your child doesn’t get on particularly well with their teacher, they haven’t done as well as you would like?  Hey, it’s only a year.  We can all afford to write a year off here or there.  Eighteen year olds do it all the time.  So you’ve got a nightmare class with children you find really difficult to teach.  It’s only a year.  It’ll be over before you know it.  And before you know it we have forgotten what went before because we are on to the next set of challenges, we are taken up with the next lot of obstacles.  Nothing gets changed because we are too busy mountaineering/fighting the next set of fires, and we start to wonder how many years off it’s acceptable to have.

Unseen difficulties.  I’ve written about the hidden power of labels before.  I’ve written about the insidious effect of having your own personal TA (who may or may not subscribe to the labelling effect) before.  I’ve wondered aloud at the wisdom of entrusting our most vulnerable, and our most difficult to teach, to the least paid and the least trained members of our educational workforce before (and really, no disrespect intended).  I haven’t written about the day that Sam fell off a wall and I took him straight from school to A&E.  I haven’t told you about the time he walked for miles with his class on a day out, or sat on a church floor for the carol concert and was poorly for a week after the experience.  Needless to say there are plenty of tales to tell of the unexpected, the events preventable by a little experience, or specialised knowledge, or effective knowledge sharing.

Home and school.  I can’t count the times I see the relationship between parents of children with special needs and the schools they attend characterised as a battle.  As a parent I’ve been labelled as pushy, or fussy, and difficult; precious.  I’ve alluded to the magnifying effect of Down’s syndrome, the way that everything is harder, slower, in sharper relief.  Parents are under pressure.  Teachers are under pressure.  Add to that a challenging child, and I don’t mean that in a perjorative sense, but what you have is a powder keg, a road crash waiting to happen, and one that echoes, continues to affect families and subsequent teachers, for years to come.  It was a shock to realise that maybe I wasn’t as awkward as I was made to feel.

Friendships.  What it is that we want when we send our children off up the road, tiny in their miniature uniforms, is acceptance; a public acknowledgement that our children are worth just as much as everyone else’s.  That, when we were told that we wouldn’t be going on holiday to Italy, but in fact were heading to Holland, they lied; that we were taking our two weeks in Italy just the same as everyone else.  And one of the bench marks of our citizenship on planet normal?  Friendships, playdates, birthday parties, after school clubs; involvement in the extras.  Over his primary school years, Sam had few birthday invites and one play date, and those were confined to the infant years.  A try out at the school football club resulted in me being told that to have him there ‘wasn’t fair on me’ (not me).  If there’s one thing that this blogging process has taught me it’s that I am not alone.  It’s that my experience is echoed up and down the country, and is the subject of academic research papers (qualitative probably).

In a school system where the emphasis is fairly and squarely on academic results, where the pressure is on from the moment the children step through the door for pace, pace, pace, not a moment wasted, heads down (but not thumbs up), where is the space for children with difficulties to learn how to be friends, to learn about the oh-so-important incidentals?  Did we forget that the point of education is not so that we can have nice pretty sheets full of pretty data, but to prepare our young people for adult life?  Did we forget that part of being an adult is the ability to make and form friendships, to accept that other people do not exist in order to service our educational needs?

Sometimes, when I see that my daughter(she’s in Year 4) has 15 minutes in the morning and less than an hour at lunch to play with her friends, I wonder if that is exactly what we have done.  When I see or hear of children with SEN consistently excluded from playtime because of playground difficulties, and by this I mean things like fighting with other children, or causing or getting into constant trouble because it’s easier just to keep them in than get to the heart of the matter, or worse, excluded from the school itself, I worry.  I’m not saying that the playtime thing is particularly different in special schools – after all, they are under the same inspection pressures as everyone else – but what they and great mainstream schools like them do have is an explicit care and attention to social learning, a recognition that this is part of the picture.

Put all of those things together and what you have is a monumental struggle to communicate, to explain, to ensure that all is working properly, and let me tell you: I love my son from the top of his greasy unwashed teenaged head to the tip of his uncut toenails, but life with Down’s syndrome, or ASD, or ADHD, or sensory processing disorder or any other label you care to mention, from gifted to cerebral palsy is struggle enough.  Just parenting children, especially if you have multiple offspring, the ones who don’t have labels, is struggle enough.

I’m too tired.  I haven’t the energy.  Is it any wonder that we, the extraordinary, are heading elsewhere?

 

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This little soldier is tired of fighting all the marbles.

Who’s Afraid of the Special School?

When Sam was a baby I vividly remember sitting in the car one afternoon and having a little weep.  It was a cold, autumn afternoon, I’d popped into town and, as you do, tuned into the radio on the way and an article, probably on something like World at One, caught my interest.   I sat, after I had parked, for some time, listening.  Even now, fourteen years later, I can remember that moment as if it was yesterday. The greyness around me, from the gravel of the car park, through the leaden sky, to the colour of the car even; an ordinary day, an ordinary mother and an extraordinary baby.  He sat beside me, wrapped up in his too large snow suit, sleeping soundly as I wept, for his lost future, for my lost career, my lost world, and my new one.

It was all about school inclusion.  The old (new) SEN Code of Practice had just been enacted and I was listening to a report of a now grown adult, whose parents were determined for her to attend a mainstream school despite her difficulties, and what a success she had made of it.  I cried.  Not because I had any doubt that Sam wouldn’t go to the local school.  After all, I was on maternity leave from a lovely school who had accepted a little lad with Down’s syndrome into our learning community just as I was leaving.  My mum, an infant teacher before my sister and I came along, often told me of a boy she had taught in the ‘60s, whose parents had searched long and hard for a school where the teacher was prepared to change his nappy and make a place for him in her class.  No, I cried because the Code of Practice, for me, signalled an official end to hiding children with disabilities away like shameful secrets.

I admit it.  I am a fully paid up member of the Edu Fan Club.  I joined it years ago, when I saw in teaching a way to make a contribution to the world in which I live, a way to make it a bit better, one child at a time.  The facts that I enjoy aspects of it hugely (I love working with children, I like long and medium term planning, I like running my own show, that sort of thing) were fringe benefits as far as I was concerned.  Early job application letters that still exist somewhere on the hard drive of this computer are testament to the idea I fully bought into: that teachers, and schools, the Whole Education Fandango, were responsible for, and the saviours of the universe.

I suppose I, and my fellow edu-addicts, could be forgiven for thinking that our little jargon infested, acronym dominated part of the world is the b-all and end-all of everything; it’s an all consuming job, after all.  But it’s only us, only those of us who went from school to college and back to school again, and especially us who have children going through our own little part of the edu-jungle, who have our lives dominated by it to the same extent.  It’s easy to get it a bit out of proportion.

And somewhere along the line, sometime when I wasn’t really thinking, just absorbing and feeling, I got myself confused.  Somewhere in my mind I got the idea of an institution where inconvenient people were locked away, out of sight, out of mind, muddled up with special schools.  I was afraid.  What would Sam learn there?  Who would his friends be?  Who would be mine?  Would I ever meet anyone ever again?  What kind of world would I find myself unwillingly participating in?  I was afraid that it was one full of stares and pity.

It took a while for the penny to drop.

It took a while for me to realise that having my special child attend a mainstream school wasn’t going to insulate him from the stares or the pity.  It took a while for me to discover that there are lots of ways that a child can be included – or excluded in a mainstream environment. It took a while for me to discover that the special school is a place of hope and joy and celebration of who we are, warts and all.  It took me some time to notice that the special school is out there, at the events, the local markets, getting involved, inviting people in; being a valued part of the community.

It took a good long while, until I had children of my own and I realised where responsibility properly lies, for me to see that schools and teachers are not, and neither should they be, the panacea for everyone and everything.  Inclusion as a concept, a taking of a public and proper place in society for all people is bigger than schools.  It’s football, and Brownies, and drama club and swimming.  It’s doctors and midwives and health visitors, and the way they tell you the news.  It’s church and workplaces and walks out in the country and camping.  It’s neighbours and community; society not individuals.

And edu-world?  We have a part to play, but it’s only a part.

It's a jigsaw.
It’s a jigsaw.

For more posts that add to the discussion please see:

http://mainstreamsen.wordpress.com/2015/01/01/how-normal-do-you-have-to-be-for-mainstream/

http://jarlathobrien.wordpress.com/2014/12/30/entitlement-yes-inclusion-no/

http://inspiringtchers.wordpress.com/2015/01/01/to-include-or-not-to-include/

http://mimanifesto.wordpress.com/2015/01/01/special-needs-are-a-special-case/

If you know of any more, please add them to the comments.  This discussion is shaping up really well and is, I hope, informative.