Dear Friend

My dearest, dearest friend,

I think that I owe you an apology.  Having written and written and written, and published it here, in the most public of fashions, and criticised and ranted and stomped around, and complained about the power behind other people’s words, I forgot that these rules apply to me too.

I forgot that when I put my fingers to the keyboard that my words are fearsome.  They tinkle out of my consciousness and splash, rippling through the interspehere, directly into your mind’s eye.  I forgot that when you read these words of mine, these words that I have spent time crafting so that they can attempt to hold the emotion I feel, that, as well as changing minds, they too can wound, and damage that which I hold most dear – your friendship.

I forgot that I am just as guilty of putting my foot in it as anyone else.  And because I spend so much time in my head, mentally composing, I get a bit carried away.

So don’t forget to tell me when I overstep the mark.  And don’t, whatever you do, feel that these words of mine are directed at you.  They aren’t.

They are directed at a world that doesn’t understand even remotely what it is like to live with a child with Down Syndrome – and you do.  You might not know it all, but because you bother, you listen, you read, you laugh and cry with me, you understand more than you think.

So thank you for reading this blog.  Thank you for listening to me when nothing will do other than to put the world to rights over a cuppa.  Thank you for taking Sam into your heart, for making him, and me, a part of your family; for including us in your life.

All my love,

Nancyxx

What Not To Say

Oh, people put their foot in their mouths all the time, so, in the interests of harmony between us, and me not jumping on your head, or down your throat, here is my list of ‘Things What Not To Say To A Parent Of A Child With Learning Difficulties Like, Say, Down Syndrome’.

1.  Did you know? (Sympathetic lilt and head tilt)  I’ve written about this before, but come on!  I’m asked this all the time, and I’m still not entirely sure what people mean by it.  What do they want me to say?  Yes, I knew I was having a baby.  Yes, I knew it was only going to be the one.  No, I had no idea that it would be a boy, or that he would have red hair.  That was it.

2.  Is it true that Down’s people don’t feel sadness?  Perrrleaaase!  Come to my house at bed time/tea time/any other time and you will witness a whole range of emotion from teenaged grumpiness to frustration to sibling anger to teasing laughter.  Please don’t assume that because he has an extra chromosome he won’t cry of you hurt him or laugh if you tell him a joke.  If you cut him, he bleeds.   And while we’re at it, can we put the Down’s at the other side of person?

3. He might be able to live in some sort of sheltered accommodation thing when he’s older.  Ok, so maybe it depends on the age of the baby when this one comes out, but in general, no.  Just no.  With the pissy economic bad luck of my generation I’ll be stuck with three kids in the house for years to come, while they attempt to save up enough cash to move out, chromosomes or no chromosomes.  In the mean time I’d quite like to enjoy their childhood as much as I can, if that’s alright with you, rather than depressing myself with thoughts of a future I do not know.

4. I treat him exactly the same as the same as the rest of the class.  Well, that’s very nice of you, but in case you hadn’t noticed he has significant learning difficulties and he won’t remember on Friday, when everyone is enjoying their Golden Time, what it was he did on Monday that means he has to sit and watch while everyone else has a good play.  Thanks to a slower working brain, it will take him longer to understand what you want him to do.  You’ll need to give him time to come to terms with a lesson that he really likes, say PE, finishing, and starting another one.  Adjustments so that he can participate in class life will have to be made.  Sorry.

5. They are so loving.  Well, you know something?  Until relatively recently, many people, adults and children with Down Syndrome, lived in institutions, not loving homes.  I don’t know about you, but if I spent most of my life stuck in a hospital-like situation, with people who didn’t love me, most likely treated me badly (Winterbourne View, anyone?), then I’d be pretty overjoyed when someone paid me a bit of attention.  Think about it.  And while we’re at it, let’s have less of the ‘they’.   People who have extra chromosomes are just as individual as you or me.  He may be like this, he may be like that, he may be like the other – just like you or me.  All women are not a, b or c.  All men are not d, e or f.  His individuality is no more constrained by his genetics than yours or mine.

6. He is fine in class.  Really?  Really?  Because I can’t get him to walk the five minutes up the road in the mornings.  I can’t get him to do any homework, like reading, or spellings, or colouring even.  When he gets home he is exhausted, and I have to carry him up the stairs, every night, because he flops to the floor at any mention of having to do anything for himself.  And do your standards of behaviour match mine?  Because, from the odd throwaway comment you have made, the way I’ve seen you let him go to the front of the line when he wants to, rather than taking his turn like everyone else, I’m not so sure that you do.

7. Leave it to us, Mrs Sam, we’re the professionals.  Er, no.  The last time I looked, I was the expert in the room on my child, not you.  And this doesn’t make me a pushy parent, it doesn’t make me someone who wants to run your show; it makes me someone who wants the best for my kid, and wants you to know some stuff that will help you teach him better.  I didn’t spend all this time and energy getting him to the stage where he could attend a mainstream school for you to cock it up over notions of professional pride or a misplaced sense of do-gooding-ness.

8. Down’s kids don’t get nits.  I.  Kid.  You. Not.  Just don’t say it.  Don’t even think it.  Nits are no respecter of race, class, creed or chromosomes.

9. It’s not fair on me.  I’m sorry, what?  Who said anything about fair?  When the bell goes and the children return to their homes, so do you, and, if you don’t have kids of your own, you get to revel in some lovely peace and quiet.  And look!  To help make those difficult days a bit more palatable, you know, those ones where the kids were off the wall, high as kites and just didn’t seem to get it, you get paid for your trouble.  Last time I looked none of that applied to me.  I didn’t volunteer.  I get no financial recompense for my hard work.  I don’t have a choice.  I can’t walk away at the end of the day.

10. If I found that I was carrying a baby with Down Syndrome, I would have a termination.  Well, that’s your decision, I suppose, but every time you say that to me, especially when my son is in the room, or worse, in your arms, you say that he is some sort of non-person who shouldn’t exist.  Last time I looked, chromosomal normality didn’t guarantee anything much, other than chromosomal normality.

And don’t assume, just because I’ve got makeup on, or nice nails, great hair or a new dress, that everything is OK.  Don’t assume, just because it seems alright on the outside that it hasn’t been a long, hard journey to get here, that there haven’t been tears and tantrums and tiredness, deep dog tiredness along the way.  Don’t assume anything.

And if you can’t think of anything decent to say, don’t say anything at all.

I get cheesed off too, you know.

The Yo-Yo Man

When Sam was born, I was stuck.  I don’t mean that I didn’t know what to do and I had to ask someone for help, that sort of thing.  No, I mean that I was physically stuck.  If the doctors had had their way I would have been hooked up to blood transfusions and been literally rather than metaphorically tied, but me being me, I wasn’t.  Instead, I was wobbling around the ward waiting for what seemed like an eternity to go home.

It’s a strange fact that the maternity ward, like every other hospital ward when you are feeling better, is the most boring place on the planet.  There is nothing to do.  Having expected to be in and out in a flash, I, like many of my similarly confined peers, had not thought to bring any entertainment with me.  There were no smart phones, there was no Twitter or Facebook.  There wasn’t even a telly.  And anyway, if you took yourself off to the rather tatty common room to find one, there would be nothing on, and, if, by some miracle there was something a person might like to see, you could bet your life that the baby would need something, like feeding or washing or changing or something else equally important.

For me, after the drama of birth, the period post-partum was characterised by stillness.  For him, for my husband, for the new daddy, it was anything but.  He rushed around, fetching all the things that I hadn’t thought I would need (like shampoo and conditioner – as well as being boring, the maternity unit is the Hottest Place Ever and a nightmare for those of us with curly hair, ensuring that we have much bigger hair than we would like), and attempting to prepare the house for our return.  And all this needed to be completed in the three days paternity leave he was granted (two of which was taken up by me being in labour).

For us both, the arrival of Baby Sam signalled a revolution in our circumstances.  In preparation, we had given up jobs, upped sticks and moved house, started a new life entirely.  From being a young, professional, DINKY couple, we catapulted ourselves into traditional roles that, on the one hand, liberated us from having to think about logistics, but on the other, put us in places where it was difficult to understand the experience of the other.

For a while we played the ‘my life is more difficult than your life’ game, especially when baby number two came along.  I would long for the freedom of time alone in the car on the way to work, of conversations with adults that weren’t interrupted by screeching or disasters involving poo.  He longed for the freedom of choosing what to do when, a release from the clock watching of flexi-time, the indescribable boredom of meetings that dragged on and on and ate into teatime.

By four o’clock, and the start of the most difficult couple of hours of the day (between tea time and bed time) I was longing for his return.  By four o’clock, the lowest point of the sleepy pocket, he was longing to come home.  Until, that is, he put his back out and was at home for a couple of weeks.  Four o’clock wasn’t quite so attractive after that.

Our emotional landscapes were different too.  For us both, discovering that our baby had an extra dimension meant that Anxiety entered our lives in a big way.  We entered into the adventure of parenthood, as does everyone, in a state of innocent expectation that everything would be easy (apart from broken nights and nappies); something that disappeared the moment we heard the words ‘Down Syndrome’.  Was he too hot?  Was he too cold?  What were those noises?  Why had he stopped making those noises?  Was he breathing?  Sleep eluded us even when the baby was snoring.

But, being in sole charge of the baby, managing to keep him alive, and, even better, seeing that he grew and developed, learned, did wonders for my confidence.  After the Fiasco of the Broken Leg, I returned to only extreme levels of concern when we visited playparks with the sort of equipment that encouraged Falling Off, but daddy remained on high alert.  Thanks to the distance created by breadwinning, he wasn’t with him enough to calm down for some time.  He still gets the jitters; worried that he’ll run off, or get lost, or find himself in the middle of some muddle or another.

I was the one who did the hospital visits, the check ups, hearing and sight tests, the overnight stays.  I was the one who was delivered there, and stayed, until someone came to rescue me and take me home.  I held all the information in my mind, the growth charts, the consequences of low oxygen levels at night, the development checklists; his height and weight and shoe size.  I was the one who sat, enthroned upon the sofa, feeding the baby.  He was the one who rushed about, bringing in the bread, backwards and forwardsing, yo-yoing between public individual and private family man, some days never even getting the chance to get out of his tie before I, desperate for a bit of peace and quiet, left him holding the baby while I walked around the block.

When Sam was born, and we found that we were dealing with a bit more than we had bargained for, we acted as one instantly.   We knew that it wasn’t us that had to live with a life changing condition, he , our son, did; but thanks to our experiences we knew how to.  We knew that it wasn’t so much his genes that guaranteed his life chances, as the solid, loving foundations we could give him.  But the knowledge was easily buried under the pressure of day-to-day living.

It was only as we left traditional parenting behind, when I went to work and he took days off so that he could be there when they were sick, or take Sam to see the paediatrician or take a hearing test, when I had to learn to transform myself, every time I returned from my place of work, back into mummy from the moment I stepped through the door, when we walked in each other’s shoes, that  we fully understood each other.

 

Happy Father’s Day.

 

 

 

The Long Game

If you had asked me three years ago whether Sam would be reading using a synthetic phonic based approach, I would have laughed in your face.  We tried, we really did, but when it came to reading, Sam couldn’t blend efficiently enough to create words out of print, let alone any meaning out of a sentence.  Having done a little bit of reading around the subject of teaching a child with Down Syndrome to read, I was bitterly disappointed to see how little his inroads into the delights of reading were, but I could understand why.

One of the by-products, if you like, of an extra chromosome number 21 can be slower brain processing.  This is evident in the way that Sam finds it difficult to appreciate danger (crossing roads can lead to fun and games), in the way that it takes him longer to respond to requests (putting aside the belligerence of a young teenager), to changing his mind, especially when he is in a temper.  I dislike the word ‘stubborn’, too many people seem to put it together with Down Syndrome, but, like many stereotypes, there is a tiny nugget of truth in the observation.  For Sam, the process of deciding which sound the individual letters stood for, blending them together, making them into a proper word and then stringing them together to create something meaningful was several steps too far.

I was saddened, not only by his struggles, but also by a school system that didn’t seem to want to break a few rules on his behalf.  Because, to me, the joy, the utter exhilerance (is that even a word?) of reading was, and is, worth breaking some.  I remember one of the first books I brought home from school.  After an infancy full of stories and song, of ‘A is for Apple Pie’, I was raring to go.  I sat on the floor behind the swivel chair, in a patch of sunlight beaming through the window in the garden door, and read my Ladybird book to myself with an enormous sense of satisfaction.

How I loved those books.  The stories may have been somewhat lacking in, er, story, but the pictures!  Paintings that drew you in to a world, as a child of the Seventies, that had just gone past.  The sky was always blue.  The water was always clear.  He always wore a red jumper, she yellow.  The dog never dropped the sweet from his nose and the toys in the window always looked like so much fun.

But, not long after I had settled myself down in my cosy nook, I stumbled across a word I could not tackle.  I looked at it, perplexed, but, despite my best efforts, it refused to rearrange itself into anything sensible.  I frowned.  I disentangled myself from the curtains.  I knobbled the nearest  reading person and asked for help.  It happened to be the be-spotted step-son-of-my-mother’s-cousin, who was somewhat embarrassed, in the way of teenaged boys, by my request, but he solved the riddle for me nonetheless.

Such was my desire to read that I don’t actually remember struggling again.  I may have got the names of characters wrong but I glossed over them, in my rush to find out What Happened Next.  Of course, it may be that my leaps in learning happened during my long illness, my stay in hospital, and the pretty much one-on-one lessons from my mum (via the Mr Men) and the hospital teachers (shinier books than in school), but, to be honest, I don’t remember much about that.

What I do remember, though, is how I always, right from the very start, loved a story and, while not entirely breaking my heart, it certainly squashed it pretty flat that Sam, my son for who I dream so hard, couldn’t seem to share the same magical experience.

And yet.

At thirteen years old he has had a year of instruction on a phonics programme, and guess what?  He’s reading.  He’s reading all sorts of things.  From posters to calendars to road traffic signs to Which Caravan Magazine to the blessed reading book that still comes home, after all these years.

And the funny thing is, despite everything, I don’t think it’s because the teaching is any better now or was any worse back then.  The subject matter hasn’t changed.  There may be some different cheers (we like faaaaanTAStic), but the essence of the lesson is the same.

But he is not.  He is no longer that little child who couldn’t dress himself, couldn’t cut up his own food, wouldn’t drink out of an open cup.  Instead of sitting on the pavement, a protest at having to walk to school, he rides his bike over a mile, there and back.  Two nights ago I watched him perform on stage, no hand holding, no watching everyone else, a spontaneous ‘yeeeesssssssss’ the moment before the rapturous applause.  He’s growing up.  And the process, the slow change I have observed in my special son makes me ask questions.  The new SEN Code of Practice is about to come into force.  In it is a requirement to  identify problems early, to put measures into place as soon as we can to give children the best possible start in life.  Great.

And yet.

Some of them are so terribly young.  They skip around school like the babies they are.  They attend intervention after intervention, miss lesson after lesson of the sort that they might enjoy and benefit from and despite it all they still haven’t made the two points progress they ought.  Before we know where we are we have slapped a label on them.  A label we can’t quite name because we can’t quite put our fingers on what is going on.

I wonder.

Would waiting a bit be such a bad thing?  They are only babies after all, and education’s a long game.

Isn’t it?

Help!

It took me a while to figure out that I was being bullied by my now ex-boss.  At first, all I felt was a vague sense of disquiet that I never knew where I stood.  After a while I began to question why I felt under such pressure, and why it seemed that I had to work extra specially hard to get people to talk to me when I came back into work on Monday after my Fridays off.  “Just do exactly as she says.”  “Work harder.”  “You’re getting it out of proportion,” were common themes of my conversations with friends and family.  I tried.  I really did.  But nothing I did seemed to make anything better; if anything, it made it worse.

So, how did I come to the realisation that what was happening to me was rather more than ordinary work-place stuff?  I was ill.  I was living in such a state of anxiety that I had headaches that were so bad that I couldn’t really see.  My heart was racing for much of the time.  I felt oppressed, depressed.  I went to see my doctor and cried when I asked him how poorly I needed to feel before I was incapable of working.

And while I was at home, recovering, I did some finding out.  And the things that I found out I wanted to share with you.

You’ll have to excuse the links, I can’t see the point in re-writing what others have put so well before me.  I hope, if you suspect that this might be happening to you, or to someone you know and love that you will find them useful.

For answers to questions such as ‘how do I recognise bullying?’, ‘why me?’ and ‘why have my colleagues deserted me?’, go to http://www.bullyonline.org/  I really can’t recommend this site highly enough, or the book, by the late Tim Field, that accompanies it.

For an interesting forum discussion that gets you thinking (about our own behaviour too!) check out this discussion as to whether your boss is a psychopath or a narcissist.

For confidential help and advice for teachers who feel bullied, this anonymous forum for discussion is invaluable.

The Teacher Support Network has an anonymous helpline.

When contacting unions, I have found that the regional office is best placed to help you.

There are ways out.  You don’t have to put up with being the target.

You can move on.