Monthly Archives: December 2014

Pneumonia Christmas

Tonight, as I sit here in front of the fire, my children warmly tucked up in bed, it is easy to forget that, for a while, this time of year, these few weeks when we are at our darkest, dampest and coldest, this particularly quiet empty time between Christmas and New Year were not always so cosy.  Winter has long been a problematic time for me; many years have seen me cough my way through plays and concerts, descant parts that still ring in my mind remained unsung as my throat  stopped working in protest and internal temperatures rose, but nothing, nothing that had gone before prepared me for the onslaught that was winter-with-baby/toddler/child-with-Down’s.

The summer when Sam was about five months old we headed into the hospital for a sleep study.  He made this funny little duck noise (it’s the sound of a floppy larynx) and struggled for breath when he slept; an overnight stay hooked up to numbers and beeping diagnosed sleep apnoea, but not bad enough to do much about, and certainly not enough to warn me of what lay ahead.

I’d never been in an ambulance before.  I’d never had anything to do with nebulisers, but when he wouldn’t stop coughing, when he couldn’t catch his breath, when my little baby didn’t cry, kept on trying to play but couldn’t, when his skin took on a strange papery texture, I took matters into my own hands and we rocked up at the small injuries unit (we know the staff there quite well).

Later that night, as I sat, itchy eyed, swimming slowly to realisation that he wasn’t just a little bit ill, I watched a young doctor watch my son, dry nappied and dressed only in a mucus-and-calpol stained vest; I watched her check his oxygen sats again and again, and I heard her say, ‘come on Sam’.  I wondered emptily if it was at this point that I needed to worry; seriously worry.

It’s a strange state, the one where your tiny child is in hospital.  They haven’t been in your care very long, and, when they were born with an extra little complication, the ward is never very far away.   It’s almost as if that small person doesn’t quite belong to you.  To be shuttling backwards and forwards, in and out for appointments and consultants and overnight stay feels almost normal.  Strange, but normal.

Hospital is where I realised that Sam was signing.  It was just before New Year, and we were playing with him, chatting over the possibility of going home, as there wouldn’t be many people around for the 31st/1st, when we noticed that whenever my name (mummy) was mentioned, he made the same action (putting a telephone to his ear, make of that what you will).  Hospital is where R realised that there is a certain selflessness about motherhood, when he came upon us both, he sleeping upright in a plastic chair thing, head tilted back, under a perspex oxygen box, me, fully dressed, medium pregnant and crashed out on a sort of pull up bed, casually draped with hospital blankets.

I remember those years, those pneumonia Christmases, with an echo, a vague sense of unease that the doctor’s surgery will be closed, that the chemist’s doors will be locked for the length of the holiday.  I know that, even though, for us, the trials of the season of good will are lessened by growth and strength and sleep, that there are many, parents who are starting out on their journey into special parenthood, who are where we were, in the quiet week, sitting on the edge of chairs next to hospital cots and beds, wondering how low the sats are supposed to go.

I’m not one of those who sees no need for stopping at this time of year.  It’s not only the fact that the children become impossible, wound up into a frenzy of excitement and expectation by the glitter and tinsel, the making of cards and practicing of carols and plays, such that they are good for nothing except a bit of colouring and story time.  It’s not just that we adults are tired, exhausted by the efforts of keeping on keeping on, the agony of dragging ourselves out of our warm beds into the dark and cold (and that’s the kitchen), the forcing of breakfast between reluctant lips.

We are fools when we think that we are somehow beyond the dictates of the natural world.  A large part of me rants and raves at the nonsense that demands that we eschew the Christmas crafts in our classrooms, in favour of carrying on with the serious stuff of learning whatever it is we are supposed to be teaching them now, but the bigger part, the part that has endured the snot, the coughs, the temperatures, the vomit, the fear that all might not, in fact, turn out well, that part of me sits back wearily and sighs.

One of the funny things about Down’s syndrome is that it acts like a magnifying glass.  When Sam is unhappy or worried or doesn’t get it, you can guarantee that other children feel the same way.  His confusion may be greater, but confused they still will be.  While Sam, and children like him, might grace the wards at the end of December/beginning of January, the others, the ordinary, the typical children, and their parents and teachers, they need rest and recuperation too.

Give us all a break.

 

Bigger, stronger, playing a game, but still vulnerable.
Bigger, stronger, playing a game, but still vulnerable.

 

 

Advertisements

Nurture 14/15

I can’t quite believe it’s been a year since the last one  – and just over a year since I started this blog.  The rules have changed slightly, and this time I only have to do five things to be thankful for and five hopes for the future (which is good, as I am perennially pushed for time), but it does mean that I’ve been wondering what to choose, mulling it all over.  However, if I cogitate too long, Christmas will take me over (it did), so here goes.  First up: thankfulness.

  1. Sun, sea, boats.   My.  Word.  Have we had fun with the Clear Air Turbulence this year or what?  Every year R and I have had a brief discussion over whether we should get rid of the boat, only this year it morphed into getting another one – Poppy the Oppie joined the family at Easter and thanks to her (and a large dose of Swallows and Amazons for A) we finally got out in the boat as a family and, wonder of wonders, took it to Salcombe for a weekend.  The weather forecast was awful, it clashed with the end of term, but we chanced our arms and the sun shone and the wind blew and what a time we had.  Not only did R and I get the chance to sail together, IN THE ESTUARY, our gybing hats on backwards and clinging on for dear life, but we followed it up with a regatta AND a trophy (the first ever).  I’m still not the biggest fan of camping, but I’ll put up with it for the sake of the CAT (and if I can find away to avoid sleeping on the floor).IMG_2589
  2. This blog in particular.  Not only has it given me my voice back, but it has opened doors to me I never thought would be even slightly available to me.  I’ve spoken at things, I’ve met and made new friends, I’ve had my picture taken, it’s been read and RTd by Ken Robinson.  I’ve found a community of people who share with me aspects of my life that can be isolating – mothering a child with Down’s syndrome, part time teaching, part time working, part time parent, part time thinker of things like politics and feminism, that sort of thing.  It’s even made me some money.  It’s reminded me of the academic side of me, made me think about things I only briefly touched on many years ago, and made me wonder if I shouldn’t consider a little trip back to academia. The personal is political.
  3. He and I are both in gainful employment, and this means that we can give our children some wonderful extras like music lessons and drama clubs, visits to London and a secure home with a garden and a vegetable patch.  He has a job he loves, I have one I enjoy.  I’ve had some interviews, one of which was successful (writing moderating again), which was kind of disappointing, but, to be honest, if I had a different job I may not be able to spend time thinking and writing, so it has its advantages.
  4. Posh hotels. I’ve had TWO stays in them! TWO! One in York with the whole family for an edu-conference, and one in Caernarfon, prior to our assault on Snowdon.  I’m so glad we finally did it – and I’m so glad that we finally made it to the top together.  R and me.  Team of two.  Sunshine all the way there and all the way back.  Even if my legs were agony afterwards.IMG_1597
  5. We have each other. We are here, all five of us.  We had an unexpected death in the family not very long ago. Nothing very much happening, except hanging out with the people you love, and who love you in return is something to be eternally thankful for.

 

 

And hopes for the future.

 

  1. I need to learn to cope better with a whole lot of things.  I’ve always been a bit of a taker of things far too seriously.  As well as finding physical balance, I need mental balance too.  I’m sure my mum, who has to listen to most of my railing and ranting  against the state of the world and my place in it will be grateful if I can manage to do at least a little of this.  As part of this I would like to change my working timetable at the very least.
  2. Meet people. Partly thanks to a different work schedule, I haven’t managed to see half the people I would like to.  Next year, I would like to see more of the people I love who I don’t see so much (my dad and my sister), meet up with old friends more (you know who you are my lovelies), and meet new friends in the flesh, in particular the online community who have welcomed me and made me feel part of their own.  Jonny, Tom, Sue, Hayley, Paul, Kirsty, Jane, Tim, Carol, Jill, Ross, Mark, Rory, Joanne, Simon, Jarlath, Jules, Rachel – the list goes on and on.  It might take me a while to organise my temporary escape from the bonds of motherhood, but I’ll see what I can do.
  3. Music.  I want to make some room for that.  I have a couple of pieces I have never been able to play on the piano and we now have a ‘cello in the house.  I am sorely tempted by a choir.IMG_2967
  4. I plan to start a MEd soon – but the university hasn’t impressed me very much with its lack of organisation so far, so I may well complete a module there and then consider my options.  All advice on this front is welcome.  It’s a financial commitment that will be quite hard to meet, so I don’t want to be paying for something and not getting anything out of it, if you know what I mean.  I am getting awkward and hard to please, aren’t I?
  5. My children. I hope they are happy.  I hope they are healthy.  I hope they know how much they are loved.

 

Oh, and writing!  How could I forget that?  The journey into my own thoughts has been revealing, not least because I am slowly realising that I am not alone,and neither am I entirely mad (not yet anyway).  Other people experience the splash of words on the page, other people have those strange trains of thought that won’t leave them – and other people agree with me.  Not all the time, but to find myself, for once, not the oddball outcast with the strange ranty ideas, is balm to my soul.  I want to keep on doing that, keep on listening to the promptings of my heart, and see where it takes me this year.

 

Thank you for reading, and have a happy and healthy Christmas and New Year.

 

 

Understanding

I have told the Christmas story many, many times.  I have told it as a mother, I have told it as a teacher.  It is part of the cultural life of schools, this story; it is featured, almost without exception, in every infant Christmas show.  Not being an infant teacher, I have never had to sweat it out while Mary and Joseph had a tussle over who gets to hold the baby Jesus, or point the shepherds in the right direction; no, my role has been to tell the older ones the story, to make sure that they know the names of the principal characters and the order of events, how far Bethlehem was from Nazareth, that sort of thing.

It’s a story we adults tend to take for granted, but, when you come to tell it to children, who are hearing it again for the first time (between the years they forget – or they get muddled), things are a little more complicated than they first seemed.  Take Mary.  It’s easy to gloss over her unmarried state with the little ones, but as they grow, the questions appear; in today’s world where many parents have dispensed with marriage, why the big issue?  I could explain that perhaps it was a little awkward for Joseph, taking on another man’s child, but I don’t really go there with Year 4.

And then there’s the census.  And Roman rule.  And taxation.  And inns, even.  One year I had a conversation with a very amused mother who informed me that her daughter had been telling them all that Mary and Joseph couldn’t get into the hotel because it was fully booked.  Explaining the distance between Nazareth and Bethlehem is a walk in the park compared to the enormous fact that they had to walk, or ride on a donkey, that there was life before the car.  Angels? No problem, but shepherds?  Or stables?

One of the lovely things about working with children is the way they never cease to amuse you with the funny things they say, and the funny things they do.  They are endlessly entertaining. Their misconceptions are the stuff of many staff room tales, even though we are paid to disabuse them of the strange notions they pick up from who knows where as they attempt to make sense of the world.

There are times , though, when it is not amusement that strikes but a vague sense of shock when the extent of their ignorance is revealed.  It might be times tables, it might be the alphabet; it might be the characters and places in the Nativity story.  By the time they are in Year 6, I think they really ought to know those, after all the plays they have seen, over the years.

I found myself wondering recently, after having discovered quite a large number of children who didn’t know about shepherds, or Mary, or Joseph, or Bethlehem, who hadn’t quite connected up the story they had seen enacted by the youngest members of the school community, whether we adults shouldn’t share part of the blame.  I mean, we have told the story, coached little ones through the play a million times, added in aliens and father Christmases, grumpy sheep and careless angels here and there because we feel it needs jazzing up a bit, and we forget, that for them, it’s fresh and new.

This time, though, it was the shepherds.  Those smelly individuals, stuck out in the cold; social outcasts nobody liked, so poor and ill educated that they had to take on dirty, dangerous work, guarding sheep from wolves.  I couldn’t help myself.  As I usually do, I elaborated on the bare bones of the story, added the odd aside here, a detail there, highlighted the contrast between the unloved status of the shepherds and the holiness of the angels and the news they brought.

For me, it is part of the symbolic paradox that lies at the heart of the Christmas story, that the light of the world was born in darkness and poverty in extremely dodgy circumstances, but that morning, as I told it again, I was presented with the glowing face of a young boy, a boy from the wrong side of the tracks, a boy who has shared with me in the past his fear of deportation, his knowledge that he comes from an ethnic group that is feared, despised by many, here and back where his family came from.

As he looked at the picture, the illustration of the moment that the shepherds, those poor, detested, smelly outcasts, heard the news of the baby who was about to change the world, were the first to hear the news, were chosen to hear the news, he exclaimed, ‘they are like me!’

Unlike me, this child didn’t understand this story in an academic way, taking pleasure in the symbolism and the paradox.  He understood it, because he lives it.

 

Waiting

This year I have been having the most delightful treat.  Every morning, since the first of December, over breakfast, my three children have been making me smile.  Not that they don’t do that anyway, but to do it over breakfast, while the blinds are shut against the darkness, our puffy eyes are matchstick-propped open, we huddle over the heater (the central heating doesn’t quite take the chill off the kitchen) and I reluctantly force down my bowl of porridge, is quite a remarkable feat.

It is all down to my daughter.  At 8 years old, after receiving ‘only clothes’ for Christmas last year and enduring the lack of a birthday badge, she has learned to inform me of her wants/place requests for dearly wanted items well in advance and with the sort of persistence that is guaranteed to make its way into my befuddled brain.  She wrote a letter to Father Christmas in November.  She has been planning her January birthday for some time.  And she asked me, well in advance, and with calculated politeness, if they (her brothers and she) could please have a chocolate advent calendar this year.

Now, I have to say that I have been resisting the lure of the chocolate advent calendar for some time.  Fourteen years ago, when Sam was approaching his first Christmas, I inwardly cheered when I came across the lovely advent calendar we still use, every year.  A jolly Father Christmas with a velvet hat and a soft woolly beard who, sewn across his fat tummy, has twenty-five (to be honest, this is the only odd thing about him) pockets, into which a wooden snowflake (attached to his hand with string, travels each day.  As subsequent children have come along, the turn taking has increased, the discussions over who gets to go first and in which order (in order that they might place the snowflake in the red 25) has lengthened.  It has become part of our family tradition, and I have been pleased that I have avoided the chocolate issue.

Not that I have anything against chocolate.  It is, I would probably say, my favourite foodstuff (especially if combined with some sort of biscuit, a digestive if pushed to make a choice), but the Easter egg thing is bad enough, and, as my children grow, Hallowe’en.  I just didn’t want it to become part of my children’s Christmas.  My sister and I always had an advent calendar when we were little.  We had a paper one between us that our mother stuck to the kitchen window so that the pictures stood out better, and that seemed to me to be perfectly acceptable.

When we were kids chocolate advent calendars didn’t exist.  Neither did Playmobil ones, or Lego ones, or any of the other ones that fill the shops and tempt our little ones with their promises of more and more and more…stuff.  Christmas is full enough of stuff without adding to the stuff through the month, to the expectation.

But this year, for some reason, I caved.  This year, she must have asked me particularly nicely or something, because without really consciously thinking about it, I bought them a chocolate advent calendar (each).  Father Christmas still has his snowflake, and whose turn it is to move is still hotly debated, but every morning this month my heart has melted, if I may say, I have been blessed, by watching them open them.

Unsurprisingly, A and L are keen to open the little door and scoff the chocolate before doing anything else, but their reactions have been priceless.  At 11 and 8, they are amazed that the chocolates should be ‘of’ something; they are intrigued as to what the next one might be.  They are delighted that, while the chocolate is of one thing, there is a picture beneath it of another.  They have had circular discussions over which row or column will be completed first, they have raced to find the correctly numbered window.

Sam, ever determined to be different, was keen to open number 24 straight away, but his interest has waned over the course of the month.  He’s not the biggest fan of chocolate (strange child), so he is putting his in a little pot, ready to eat when he feels like it; a steadily increasing pile of chocolate that is eyed enviously by his younger siblings, and guarded fiercely.

I’m glad I waited so long.  I’m glad that, at this age, my children have discovered something new and exciting to the season of Advent, running alongside the endearingly familiar.  I’m glad that I didn’t rush them into it, that I held on to my principles, and surprised them with an early gift.  What a joy to light up the cold, dark mornings.

Happy Advent.  Happy Christmas.

/home/wpcom/public_html/wp-content/blogs.dir/dae/58162475/files/2014/12/img_1745.jpg

Civil War

A couple of months ago I filled in an online questionnaire.  It’s not an out of character thing for me to do (although it has to be said that it is usually because I hope to profit from my time by being entered in a draw for some sort of Ladies Nice Clothes voucher), but this one was close to my heart in a different way.  It was a questionnaire from Mencap for parents of children with Learning Disabilities (such as Down’s syndrome) about their children’s experience in school.  They were particularly interested in experiences of mainstream school, and, as Sam stayed there until the end of Y6, I felt that I had something to contribute.

The main findings of the survey are published https://www.mencap.org.uk/news/article/parents-mainstream-schools-are-failing-our-children-learning-disability here in their press release.  Key statistics are:

  • 908 parents took part in the survey.
  • 435 reported having a child with a learning disability in mainstream education, of any stage.
  • 81% said they did not feel fully confident that their child’s place of education was helping them reach their potential.
  • 66% of parents who have a child with a learning disability are not confident that teachers understand how to teach pupils with a learning disability at their son or daughter’s mainstream school.
  • 65% think the way that the education system works means that their son or daughter receives a poorer education than children without SEN.
  • 64% say their son or daughter was taken out of class or activities because of their learning disability.

When asked what one thing they would change about the current system:

  • 35% of parents said that teacher training needs to improve.
  • 20% also thought the support their son or daughter currently receives needs to improve.

There must have been something in my comments that caught someone’s eye, because last week I was asked if I minded being interviewed on behalf of the charity’s ‘Hear My Voice’ campaign.  An hour into the phone call, I found that I could go on at some length about the State of Education Today and What This Means For Children Like Mine. (Thank you Twitter for helping me to think through my disquiet.)

You see, I think there is something rotten in the State of Education.  I think there is a deep hypocrisy at work in our system, and we, teachers and parents, need to start banging on about it as loud and as long as we possibly can; and for why?Because our young people matter.

I don’t just mean bright young things from the wrong side of the tracks who otherwise would face a life of limited options and shattered dreams.  I mean all  of them; from the brightest little tool in the box who needs a teacher to understand him rather than squash him, to the slowest of little tortoises who need a different kind of education altogether.  We owe them all a good start in life.

And to be honest, the way the system is set up, I don’t think that’s what they are getting – let alone their poor, harried teachers who are all at sea with what to do, which demand to meet next, or their poor, anxious parents who want so desperately to believe the best in their children, who need to believe the best in them so that they can carry on and be the best they can for them.

On the one hand, we have the vastly rushed but good at it’s heart new SEN Code of Practice.  There are some really great things in there, like ‘every teacher is a teacher of special educational needs’.  I love that.  No more sending them out into the corridor with a TA and saying that’s good enough.  No more allowing teachers to not know their special kids just as well as their ordinary ones.  It’s great that the worlds of Education, Health and Social Care are brought together in the interests of children whose lives straddle these three areas.  And it is wonderful that there is a clear expectation that most children, regardless of SEN will be educated in mainstream schools, as part of a drive towards a more inclusive society.

But when you contrast that with the other side of the coin, of targets for schools from the Department for Education that the overwhelming majoroty of children leaving primary school should have reached a standard of Level 4 (ok, I know the levels are no more, but I’m talking a language we understand here) in English and Maths, end of KS test results are published in national newspapers and lists of the worst performing schools in the country are named and shamed on the BBC, what are we to do?  Heads Will Roll if schools don’t knuckle down to these ‘aspirational’ targets, and secondary schooling, with its focus on the GCSE, is no better, with strict targets for English and Maths at GCSE, combined with pass rates based on KS2 test results.

And what about the new performance descriptors for the new National Curriculum?

  • Mastery standard
  • National standard
  • Working towards national standard
  • Below national standard

I mean, really, how do these sit with an inclusion agenda?

Is it any wonder that parents like me, and teachers like me, are worried about how children with SEN and learning disability are being served by an education system at war with itself?  Is it any wonder that parents of children with learning disabilities are voting with their feet and leaving mainstream education behind?

It would be very easy to turn this story into one of failure and concern.  But mainstream schools are, not by anything they have done, merely by the position they find themselves in, ground into the dust by opposing demands.  Teachers rapidly become whipping boys in the press for any number of societal ills for which they must be responsible, and I am heartily sick of that, even though this report speaks to me of a lack of trust.

But not entirely.

For when we take our children out of mainstream education, they don’t disappear into thin air.  They rock up at special schools and time and time again I see our experience reflected, particularly in the online Down’s syndrome community.  Happier children included in a peer group that means something to them.  Independence and life skills prioritised and a truly personalised curriculum.  Schools and teachers who listen, who understand some of the day-to-day difficulties we forget, while we are in the middle of parenting, that are, actually, difficulties.

If I was a press officer, or a journalist, even, I’d write a different headline to this one. http://www.independent.co.uk/news/education/education-news/pupils-with-special-needs-are-being-failed-by-mainstream-schools-says-mencap-9923366.html

I’d write this:

SPECIAL SCHOOLS ARE THE JEWEL IN THE EDUCATIONAL CROWN AND WE WANT MORE SCHOOLS LIKE THEM.

I would say that special schools employ people with special skills and we in mainstream education need access to them and their knowledge so that we too can do our best for the special kids we teach.  I would say that we mainstream teachers want to know more and be better, and that we parents want that too.  I would say that the real ability of special schools to personalise a curriculum is what we want to see in mainstream, not exam factories, systems I am not  convinced are putting the interests of the children they serve first.

I would say that the DfE is giving with one hand and taking away with another and in the process it is waging a war of unrealistic expectations on our schools, the victims of which are the most vulnerable children we have.

What say you?  Are we at war?