Monthly Archives: January 2015

Foundations

I wrote this post for Mencap, in response to their #hearmyvoice campaign. You can find it here: https://www.mencap.org.uk/blog/foundations

I remember when Sam was a tiny baby it seemed to be constantly raining.  For days, I did nothing but gaze longingly at the outside, in between feeds and nappy changes, wishing the torrents of water that streamed down the patio doors would hurry up and go away.  I wanted the sea of mud surrounding me to dry up, in part so that I could shake off the cabin fever, but also so that I could play with my lovely new travel system (great colours and suspension) and show my lovely new baby off to the world.  For a little while, it felt like a Keep Nancy In conspiracy.

Everyone who came to visit told me I was mad to want to go out into the bleak February chill.  And, once I was home, I had a LOT of visitors.  Almost the entire family, from long-lost aunts to my parents and sister, came to coo before the first two weeks were out, but, after the restrained hullaballo of the maternity ward, it was quiet.

For a while it had seemed as if I would never get home.  There were blood tests for me, blood tests for him, debates over feeding, debates over whether or not he had Down’s at all.  It took three days for the test results to come in.  We had been told, the evening of the day he was born, that it was likely that he had a chromosomal abnormality, Trisomy 21 being the chief suspect, but up until the moment when a gaggle of medics with long faces headed up the ward to my private room, I had refused to quite believe it.

I mean, I decided that I didn’t care, that I still loved him, that I was still proud of this baby I had managed to produce, but still.  Every time I went near a bath the tears leaked out, and I wrestled with my deep desire not to have to take on the added responsibility of bringing up a child with additional needs.  I can still vividly recall that moment when they confirmed what everybody really knew.  There was a collection of them, dressed in the NHS uniform of beige trousers and lavender shirts and one of them had an accent that reminded me of the character in the Fast Show, the painter, who didn’t like the colour black.  ‘It could be worse…’ kept flitting through my brain; the ridiculousness of the situation filling me up with an inappropriate desire to laugh.

It’s never a nice thing, or an easy thing to be told that there is something wrong with the baby you have waited so long for.  There is no kind way, no easy way of breaking difficult news.  But despite the heartache, I seemed to be surrounded by people who were looking out for me and Sam.  There was the midwife who took him onto her knee to help her with reception so that I could wash my hair.  There was the midwife who helped me to get him started on the journey to breastfeeding, who chased away the one who stuck a bottle in his mouth, made me eat some breakfast when I had lost my appetite.

And when I got home there were all the visitors.  Our new GP came round (we had only moved house a month before).  The community paediatrician came round (she had to endure a lecture on woodwork from my father in law).  The community midwife came round – for longer than she needed to, and brought colleagues with her, to introduce them to me and my baby.  And the health visitor.  Health visitors come in for a lot of stick, but mine, she who bustled in and out of my house with her scales and measuring whatnots, she who refused to let me come out into the rain and cold and go down to the clinic for I can’t remember how long but it was ages, she sat with me, she drank cups of tea with me, we talked. I knew, somehow, that she came because I was a high risk mother.  A traumatic birth, fear for my baby, a struggle to feed; these factors often add up to a bad case of post natal depression, but she never let me feel like a statistic.

These people, this amazing team, they knew that I was working hard to assimilate my position, to figure out what I was supposed to be doing; they surrounded me, protected me.  They joined with the women I had met through NCT antenatal classes and they heard the inner me, the one who knew that there was no such thing as normal, the one who didn’t care what anyone else thought and yet at the same time was worried about her ability to navigate the possibly stormy waters ahead.

They never pitied me.  They never made a judgemental statement about Sam (other than to inform me that his hair was not, in fact, blond, like his father’s, but sandy red, like his uncle’s, or poke him when he refused to wake up for his 6 week check).  They confirmed my desire to be pleased with him, to be glad that he was here, to celebrate the fact that we both made it out of the delivery suite in one piece.

They let me find my feet. They showed me there was solid ground.

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Spot the baby.

 

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Tospy Turvey

My son goes to an Outstanding school.  Not that what Ofsted had to say about it bore any bearing whatsoever on our decision to send him there.  I’ve never been one for looking at school websites, or reading Ofsted reports (unless I am applying for a job there) or checking their place in the league tables.  I’d much rather go and have a look round on an ordinary day, get a feel for the place, ask a few questions and get a few answers from the horse’s mouth, as it were.

Still, it was nice to have the inspectors’ agreement.  The novelty of having someone agree with me is always a pleasure, whatever the subject.  Sam regularly puts his uniform on in the holidays, he is keen to go no matter what his state of health, and we know, thanks to great communication, that he doesn’t get an easy ride when he’s there.  Some weeks he seems to be constantly in detention for something or other, but he still wants to go; it is his school.  Although I’m not much of a getter-involveder, this school has changed all of our lives for the better.

When I got the inspection report I was curious.  You hear such things, on the teacher grapevines; things like ex-secondary-cooking-teachers inspecting nurseries, people making judgements on institutions about which they clearly know little, that sort of thing, that you hardly know what to believe.  Whenever I have met an inspector they always seem like perfectly nice people (the last one – who was being inspected by an inspector herself – paid me the great compliment of asking me – before she’d seen my lesson, I hasten to add – if I was the NQT – I assumed it was my young and fresh demeanour that led her that conclusion), but you never can tell.  Apparently.  I wanted to know what this inspector thought of our wonderful school.  What I read made my eyebrows raise and my eyes pop.  I have never read a report like it.  Clearly the inspector was blown away.  Clearly the inspector knew what they were seeing.

And my son’s school isn’t alone.  It is one of a significant number of special schools ranked ‘Outstanding’ by Ofsted.  It is part of a success story that is changing lives for the better, not just those of the children who attend these schools, but for their families too, but, as Laura McInerney pointed out last week (was it only last week?) one that so few seem to know about, or care.  Why is this?

Often, when a school is rated outstanding there are fanfares in the form of banners hung along the school fence, stories and photographs in the local press; the parents of the children who attend these schools glow with reflected glory.  After spectacles such as those seen in the 2012 Olympics, people with disabilities carrying torches through the sun and rain, a signing choir at the opening ceremony; the way that everyone likes a bit of triumph over adversity you would think that they might get a bit more attention, but no.

It goes against the story that the education storytellers are telling at the moment.  Or some of them anyway.  It’s a story of smallness.  A story of scale.  While one son attends a school of around about a hundred pupils, the other attends the behemoth next door, swallowed through the gates along with almost two thousand other children.  It’s a story of ‘spiky’ profiles that defy nice graphs and small, small steps that sometimes go backwards.  It’s personalisation and experts in their field quietly getting on with the job.

It is perhaps a story that some don’t want being told.  I mean, what would happen if all the parents of ordinary children got to find out about these schools?  They might start wanting their schools to be a bit more like them.  We don’t want our mainstream teachers finding out about the professional expertise or respect with which their special colleagues are held, or the freedom they have to personalise a useful curriculum, or they might be wanting some of the same,and then where would we be?

I don’t think it’s the low expectations factor.  There are no pats on the head in our inspection system.  And while I’m at it, there are no pats on the head for the children who attend these schools either.  Special schools are subject to the same vagaries of the inspection system as everyone else.  We mainstream teachers, struggling with our fear of categories might want to look at their success and write it off as letting them get away with it because aww, look at the poor dears, but that wouldn’t be honest.

Oh, I don’t think that the presence of Learning Disability has nothing to do with it.  After all, we are so keen to deny the existence of Down’s syndrome that expectant mothers are screened to within an inch of their lives.  ‘Abort it and try again,’ is the somewhat inelegantly expressed advice that, nonetheless, so many of us are given.

Down’s syndrome, or other conditions like it, you know, the ones you don’t get better from, the ones you cannot triumph over because they are a fundamental part of who you are, is not exactly the story that the newspapers, or the politicians, our national storytellers, like to tell.  There’s something about learning disability that we, we who are in love with strength and beauty, winners not losers, the survival of the fittest expressed through market forces, are turning from, attempting to wipe out of our collective consciousness, if not our existence.

We don’t like to look at our imperfect selves.  We don’t like to see the reality of who we are.

And yet.

The funny thing is that it is here, in this examination of our weakness, in this dedication to the welfare of our most vulnerable, that we could well be at our greatest.

What do we make of that?

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You looking at me?

 

The Curse of the Slip On Shoes

Ah, fashion.  I’m not into catwalks or vintage, but I do like clothes.  I never used to be particularly bothered by them, other than that I knew what I liked and that was the soft, button-lacking sort; for most of my life, up until pretty much the arrival of Motherhood, clothes were what you wore to keep the chill off and that was pretty much that.

How things have changed.

It may have something to do with the coming of wages.  Wages that weren’t being spent on the doing-up-of houses and can therefore be spent on frivolities rather than practicalities, that is.  It may have had something to do with the wanting-what-you-can’t-have-after-your-body-has-been-forever-changed-by-childbearing principle, but, whatever it was, dressing myself has become an increasingly interesting pastime.  And not only me.  I am the chief wardrobe officer of the family; the lady chamberlain.

It’s a tricky business, it has to be said.  Even more tricky than the whole ‘what do you wear if you are a primary teacher?’ debate.  You wouldn’t think it, but that one is a Hot Topic.  Dress codes have circulated through staff rooms across the nation, to be met with varying amounts of derision and non-compliance.  There’s the men who Object To Ties in the strongest possible terms.  There’s the teachers (of both genders) who object to Non-Sport’s Attire for their daily lives.  Necklines?  What are we to do with those?  Too low?  Too high?  What about hemlines?  Can the children see too much when I bend over in the Reception classroom?  What about the parents?  What can they see when they look through the windows?

And what kind of level of formality are we talking about?  Many of these dress codes seem to have sprung from the same kind of generic swamp and advise ‘office dress’ but what exactly is that?  A suit?  Killer heels and matching accessories?  And the Poor Men.  They have so little choice available to them.  The reach of Beau Brummel, the most Charming Man Ever, impeccably dressed for every occasion in black and white, eschewing the flamboyance of his peers, is long.   A fancy tie (and possibly fancy pants, but I don’t like to ask) is the best they can hope for.

And the Cropped Trouser Debate is wa-a-ay before you get to the Hair Dye Debate, or, even more hotly contested, the Tattoo Debate.  With how you dress yourself, or style your hair or ink your skin an issue of personal expression, it is all too easy for us to declare in our best tones of outrage, ‘Just who is this person who is having such influence on my child?’  Who is the right sort of person to have influence over our young people?  Isn’t that to do with who they are, not what they look like?

Personally, as a primary school teacher, I’ve always gone down the fairly traditional route, but aware as I am of a concerted campaign by my female teaching forbears to give me the freedom to dress in ways that allow me not to be killed by my clothes, I’m not giving up my choices or my autonomy for anyone.  That said, I want to be approachable to small children, not intimidating.  I want to be able to navigate my way through the glue spreaders and paint without having to dance the dance of fear.  While men might bemoan their lack of choice in academic dress, I think it’s true to say that, as a man, you can’t go too far wrong with a shirt and tie, not in the eyes of other men, anyway (not in the same way that you can go wrong with the sock-sandal-shorts combo).

When I first went back to work, after I had had my babies and before I rocked up back in the classroom, one of the first things I did was to get myself a new pair of shoes (to go with my new skirt and top).  The Husband was heard to mildly ask, ‘And what is wrong with all the other pairs of shoes you have under the bed?’  Oh, how I laughed as I informed him, ‘Ladies Will Know that these shoes have been under the bed for the last ten years.  They will not take me seriously.’  Even now, those shoes, the ones I bought to signal my return to public life, if you will, receive admiring comments  from my female colleagues.  As a woman in a hierarchical workplace, how you dress, from your shoes to your hairstyle, is light walking a metaphorical tightrope.  It’s not so much Dress For The Job You Want as Dress So As Not To Piss Off The Boss With Your Better Fashion Sense And More Expensive Clothes Than Her.

Up until that point, the wardrobe decisions were centred around How Do I Dress My Sons in Something Other Than Beige And Navy And My Daughter In Something Other Than Bubblegum Pink and How Do I Dress Sam Such That He Is The Coolest Toddler On The Block? Actually, the toddler thing (once you get past the pink) isn’t too hard.  There is an array of gorgeousness for your shopping pleasure, both online and in the shops.  There was nothing I liked better, in the early days, than picking out his outfits, matching socks to t-shirts and generally acting as if he was up for a Best Dressed Baby Award and stamping around declaring loudly to anyone who might be in the vicinity that I wasn’t putting my child in an item emblazoned with some sort of sexist conditioning like ‘Don’t Blame Me’ or ‘Daddy’s Little Princess’.

It’s not so easy now, though.  Sam seems to have inherited my Dragged Through A Hedge Backwards Gene and, like many individuals with Down’s syndrome, as well as being a slightly different shape arms and legs wise, he struggles with fiddly fastenings.  The traditional school uniform would be for him, a nightmare, even though he has a fondness for blazers.  I am on a constant hunt for trousers that fit properly (short leg fitting please, thank you Marks and Spencer) or waistbands that allow him to wear trousers that not only give him ease of movement but the dignity of getting them on and off himself (thank you Boden) as well as allowing him trendiness.  Soon we shall be investigating adaptive technologies to allow him to wear ordinary shoes.

Ain’t no-one putting my son in a brown cardy.  My son ain’t ever wearing no lattice topped slip on shoes.

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That hat! Those dungarees! Those cute little boots!

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.