Monthly Archives: March 2015

The future’s special

There are times when I am really proud of my kids.  A lot of the time I am exasperated by them (particularly when they are refusing to eat my lovingly prepared lasagne) , or exhausted by them (early mornings, anyone?), or nothing-much-at-all-they-are-just-there-cluttering-up-the-house-with-their-shoes by them (that’s a good one, that is), but sometimes, every so often, I am proud of them.  It doesn’t tend to happen upon receipt of school report/at parents’ evening (certainly not enough to make me want to publish it on Facebook), neither do I feel it especially much when they take to the stage, although those moments are nice (well, my children on the stage, that is); no, I feel it most when I see them around people with disabilities.  That’s when I feel most proud of them.  That’s when I feel that in some way I might actually be doing a reasonable job at this mothering thing.

We went on a holiday a couple of summers ago with a group of families who also had children with Down’s syndrome.  We went away, a mix of ages and shapes and sizes, the common thread being the extra copy of chromosome 21, and I watched the way they played together, not an eyelash batted, and I was glad.  I was glad of the way they got on with each other, the way they didn’t stare, or run away, or laugh, or diminish anyone else because they couldn’t do the things that they could do.  They accepted the addition of that chromosome in the family as normal.

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photo credit: Jamie Garside

It happened again today.  As it’s the school holidays, the time when we catch up on all the things we’ve been putting off (the house is almost clean), this morning’s job was Haircuts.  I tend to approach the event with a certain sense of trepidation, after years of trials and tribulations and refusals and tears in the lock chopping department, but, now that we have found a barber’s that not only produces a decent cut, but where Sam is prepared to sit, and even attempt a conversation with the lovely ladies, despite my discomfort at entering quite such a male dominated environment (there are fishing rods on the wall and The Sun as reading matter), it wasn’t too bad.

Today it was quiet.  Today, at first, for a little while, we were the only customers.  Today, I was given another reason (despite The Sun) why I hold that place in deep regard.  Today a young man turned up to take his shift, and that young man had Down’s syndrome.

No-one took a double take.  No-one made a comment.  He was bossed and ordered about in exactly the same take-no-nonsense-from-anyone-no –matter-how-big-or-small-they-are way as everyone else.  He handed round the lollipops and they accepted with alacrity .

Except for Sam.  Sam paused.  Sam was unsure.

It’s not like he’s never met anyone else with Down’s syndrome before.  He’s part of a little gaggle of boys who share the same genetic quirk at school.  He went on that holiday; he occasionally goes to support group/sporting events for children with learning difficulties.  It’s not like he takes any more notice of disability than anyone else.

But this time was different.  This time he wasn’t quite so confident.  Maybe it’s because the other person with Down’s syndrome was an adult.  I don’t think any of my children have ever met an adult with Down’s before.  He didn’t do anything that they weren’t expecting, he handed out the lollies and yet Sam hesitated.

The other two, they didn’t.  Their hands were straight in the sweetie jar no second asking.  (Perhaps they have realised they are fast approaching the age when they will be deemed too old of such fancies.)They smiled and politely said their thank yous, scratching the wrappers off as soon as they stepped out of the door.  They recognised the syndrome and they, like everyone else in the shop, made no comment.  By their actions you could hardly have told they noticed.

So perhaps that’s what it was.  Perhaps, for the first time, Sam noticed that someone was different.  Perhaps, for the first time, he saw the syndrome.  You know what they say about children.  They don’t see the differences that we do.  They don’t see the difference in skin tone, of religious dress, or names.  They just play with each other, because she likes skipping or he likes minecraft.

My younger ones noticed some time ago that Sam was different.  They raised the topic the first time they recognised the facial features of a child on ‘Something Special’ (although, amusingly, it took a good while longer before they figured out that the incomparable Justin Fletcher plays all the parts).  ‘Mummy, he looks like Sam,’ was the moment when they understood that Down’s syndrome existed.  That was when I expanded a little bit about their brother.

But what will I tell Sam, when he asks?   How will he feel, in that moment, when he sees that the person who looks different, who behaves subtly differently, shares that difference with himself?  I, who have witnessed so many children realise their place in the pecking order and done my best to limit the damage, what will I say?

 I suppose I’ll have o put all that experience to good use.

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Finding Nemo

**It’s an extended metaphor**

Teaching is a funny game.  It’s one of those jobs which, by its nature, gives you insights that you wouldn’t otherwise have.  Thanks to the large swathes of young humanity with which you deal on a daily basis, patterns emerge; they swirl around you, not unlike shoals of silver fish, caught on camera.  We teachers see the shapes children create as they make their way through our classrooms that we parents can’t.

Every so often, though, something happens to pierce the distance, to bring the shoal closer, and we see the individuals, those little ones so apparent to their parents, uniform in uniforms but each one unique. We see the strong and the talented.  We see the disadvantaged, those who could be at the front, but for their circumstances.  We see the weak.  The slow.  The Nemos of the school, the ones with broken bits, or bits that don’t quite work properly.  The included children.  Something happens and all of a sudden, there they are, brightly coloured, vivid against the everlasting silver, doing their best to keep up, to swim in the deeps along with the others.

Most of the time I manage to negotiate the sea swell of school well enough, especially now that I am swimming in it again, rather than standing on the shore, without even the slightest ripple touching my toes.   It’s a strange, enclosed little world, warm, shallow waters that most of the time make me feel safe.  I understand the language that rules the waves here; I, too, swim with the shoal.  When my own tribe make remarks I have no fear in calling them on it, reminding them of the individuality of all our little fish, reminding them of what I know they know.

But every so often, I venture out to the ocean, away from the ever undulating swell and swirl of the shoal, and head to the deep.  It’s not my choice to go there.  If it were up to me I’d never set foot near the place, but, because my little nemo has needs that can’t be served here in the familiar shallow waters, to the unfamiliar we must go.

But there in the shadows, there in the murky depths, lurk the jellyfish.

The thing about jellyfish is that you’re never sure they’re there until you step right into its path.  There you were, swimming along, taking care of your little angel fish making sure he’s ok and BAM.  A sting.

You aren’t aware of it at first.  At first, you smile, nod, and leave, but later, when you return to your own element you realise that you are wounded.  Fish are forgetful, you see.  We forget that other ocean creatures don’t see the world as we do.  We forget that, because they see the nemos all the time they see the patterns the hundreds of little fish not quite like any other make, that the rest of us can’t.

It’s not the ordinary comments that people make that leave me troubled.  The ‘he’ll always be with you’ kind, the sort meant to comfort me with the dubious privilege of constant parenting, leave me exasperated but cold.  Rather than hurting, they leave me feeling somewhat exhausted at the prospect of the level of education I ought to be carrying out.  (Except I’m sitting on my sofa tippy tappying away, not even investigating the mysteries of SEO.)

No, the stings that sting the worst come from those jellyfish who wear a cloak of knowledge.  Similar to mine, but different.   They bandy around terms that frighten me, remind me that even though I don’t, there are many many other people who see my nemo as a problem, a diagnosis, a label.   Their language pretends that my son isn’t an individual, it hides the reasons behind his behaviour or his problems with hearing, speaking, eating, drinking, walking, running, jumping.  It stops me understanding and finding a way to, if not fix, then find a creative way around whatever is on the list this week.

And so, stung, I swim back to the familiar.  I head back to the world I know, the place where the future is as yet unwritten, uncharted, free from fear.

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sploosh

 

Public Property

 

It’s not as tidy as this.
 There is a stack of paper that grows, unbidden, on my worktop in the kitchen.  Every time I take a picture of a cake, I have to shove it to one side, for fear that the audience to my culinary successes will judge me for my disorganisation in the admin department.  Most of the papers that regularly flutter to the floor, be-spattered with tomato ketchup or other, unidentified splodges, come from school.  Not mine, you understand; theirs.  With three children at three different schools, and regular bills pertaining to them, the pile does nothing but increase.

I have come to operate what my husband tells me is the Push Down Stack System.  As they come in, the letters, bills, permission slips and appointments, they join the stack, only to leave as their urgency demands.  Anything still there at the end of term/end of the year is filed.  Into the bin.  It does mean that I am always a bit, what you might call, rushed, but, there you go.  It works for me.

There are some letters, though, that sink, almost unbidden, to the bottom of the pile.  Quietly, without protesting their presence, they slip, from urgent to almost forgotten, my reluctance to deal with them hastening their journey. Nine times out of ten these are letters about Sam.

The latest was a curious one.  The school actually took to texting to remind me to send it back (ah, after two-and-a-half-years they know me so well), I had delayed so long.  It made me uncomfortable, you see, more uncomfortable than I had thought it would, to sign so I put it off; giving other people permission to get involved with the life of my son.

When I first read about the replacements to statements, EHC plans, I thought ‘what a good idea’.  Children like mine, with complex needs, more often than you might think, have medical needs too. Often, these needs have a bearing on education, on schools and the decisions they make.  It makes sense for the trinity of education, health and social care to work together, because so often, children like mine have needs that span them all.  But when it came down to it, when I held those forms in my hand, granting other people, other people who had nothing to do with me, my son or my family, who know nothing about what we believe, about what we hold to be true and right and decent, the right to get involved with decisions regarding my firstborn son, I paused.

There is this funny thing about having a child with disabilities, you see, that is distinctly different to having an ordinary baby, or an ordinary child, or an ordinary teenager (should such a thing exist).  From the moment they arrive, squalling and bloody, placed into your jellied arms, it can feel as if they are not quite yours.  There are tests that must be performed, observations that must be made, help and advice that must be sought; other people who must be involved.  You may not have realised it, but from the moment you get that diagnosis, you are no longer on your own.  Public, not private.

For a long time I held them off.  I got on well with everyone, I felt that I was in control.  But then came school.  A while ago, in the course of looking back in order to write something or another, I came across the original paperwork for Sam’s statement application.  In there were foreshadowings of the problem of overweening help he experienced, sentences that didn’t jump out at me back then, but leap out now, possessing a power to make me sad and angry at the same time, even after all these years.  A whole team of people got together to make pronouncements on how he was going to get/was getting on in school.  And that, I thought back then, was that.

Only now, though, since September 2014, it’s not.  And while with my teacher hat on I might nod and agree and say what a good idea seeking the voice and the opinions of the child is, my parent heart quivers.

I think about how Sam’s mainstream education was dominated by the involvement of other people, of other people’s opinions, of him and how and what he should be learning.  Every moment of every working day time tabled and activitied, supervised, 1-1 attention given.  The day I mentioned him having the chance to stare out of the window, distracted from his Maths by the clouds or the birds or nothing in particular, the day I suggested that he, too, might pick his nose in a moment of introspection, I was met with horrified stares.  The day they suggested taking him shopping for ‘life skills’, I was confused.  Wasn’t that my job?  He was only a primary school child, after all.

When we were making the decision about secondary school, the decision was ours and ours alone.  Did we take his preferences into account? Yes.  Judging by the way that he thought one school was all about computer play and the other was a proper school (boo), we did. (We went for the proper school, in case you’re wondering.)  But when he hits sixteen, will this still be the case?

Thanks to the new SEN Code of Practice, I’m not so sure.  Those other people will be there again.  Those other people, with their opinions and their observations, their questions to my child will be there, ensuring that his voice is heard.  I’m very much afraid that I am not going to take this invasion into our private life, our personal space, our decisions made with knowledge of our child, very well.

Team around the child?  Perhaps we could all think a little about some space around the child too.

Bakeoff

Sometimes I know that I am making my life more difficult than it needs to be.  All because of some sort of long ago thought up principle I have since forgotten.  And today, as it is A’s birthday, it is baking.  I have done it, but the number of shop bought cakes I have provided for parties can be counted on the fingers of one hand.  For some reason, it seems that, no matter how pressed for time I am, no matter how I lack the skill for ornate culinary creations, I must bake them a cake for their birthday.

Over the years, I have astonished myself with my level of over-confidence.  The car cake was a bit weird looking, it has to be said (it would have been a worthy contender for a Pintrest cake fail page), but I didn’t let that stop me.  I followed it up with a number 6 (the trickiest bit being the lining of it with strips of baking parchment), a Barbie cake (even though she has never liked Barbies) (they have freakishly long legs, needing an awful lot of cake to cover them), and, my pieces de resistance, the football cake, the train cake and the kitty cake.

It’s not as if birthday parties aren’t hard enough work on their own, without the additional demands not only of baking, but decorating a cake.  After you’ve sent out the invitations, chased up the responses, shopped for the gift, the card, the themed table display, the party bags, made the sandwiches, bought the sausage rolls, the party rings and made the cheesy pineapple hedgehog, entertained the children with a variety of games varying in levels of excitement/marshalled everyone to the correct venue and made sure no one has been sick/cried/got lost, what you could really do with is a lie down in a darkened room, but no.

It’s not as if I am competing with anyone.  My sister has been on a cake decorating course, so there’s no point even going there.  I have several seriously arty crafty genius type friends who seem able to produce amazing creations like fairy castles and treasure chests complete with cascades of golden coins.  My cakes might taste nice (once you’ve got past the crispy crust), but worthy of entrance into the Great British Bake Off they are not.

And it’s not as if shop bought cakes aren’t perfectly nice, either.  I have a distinct fondness for those caterpillar cakes covered in Real Milk Chocolate, and Christmas isn’t Christmas without a chocolate log from the supermarket.  When the request came for a Thomas cake, complete with lurid blue body and grey face, off to the shops I did trot.

I suppose I just really like making them a cake myself.  I’ll even make two, if their birthday falls on a week day and I’ve got the wherewithal to get myself organised.  It taps into that fundamental part of motherhood, the ability to feed one’s children, to celebrate their appearance in my life, no matter the circumstances.

So that’s what they are, this multitude of cakes that grace the birthday table, year on year. They are love gifts to my children, an affirmation of their preciousness in all their difference, and I’ll continue making as long as they continue eating.

Gender Gap

Minister for Importance: Ah, good morning, Suzanne.  What are we going to do about this gender gap?  Oooh, tea, thanks.  I’m gasping.

Suzanne (trusty assistant):  which gender gap did you mean, minister?

Minister for Importance: Look at this!  We are lagging behind in the global race!  Our girls aren’t doing well enough in Maths and Science.

Suzanne: If you have a look at…

Minister for Importance:  And the boys!  Look at them!  They aren’t reading enough.  Spending too much time playing Minecraft the moment they get home rather than doing their homework. (tuts)

Suzanne:  Yes, I…

Minister for Importance:  They ought to be getting on with it, like the girls are.

Suzanne:  Perhaps…

Minister for Importance:  Mind you, it says here that the boys catch up eventually.  They probably did before their 20s, but we can’t tell because of the way the teachers mark the tests.  They make the girls look better than they are, you know.

Suzanne:  Oh, I’m sure…

Minister for Importance:  We really need to put a stop to this preferential treatment.  We must get the parents on board.  Get the boys doing their homework and the girls into Science.  The future of the nation depends on it.

Suzanne:  Which…

Minister for Importance:  Hmm, well, when I say parents, I mean the mothers, really, don’t I?  We must get them on side.  Supporting their children.  It’s good parenting, after all.  Without it, those kids aren’t going to do as well as they could, are they?

Suzanne:  What about…?

Minister for Importance:  Working mothers?  Yes, tricky.  They’re just not there for their kids in the same way, are they?  They can never come to the meetings or assemblies, they’re not there to supervise the homework, relying on screens to keep the kids quiet.  It’s letting us all down, frankly.  Just look at these results.  If you’re not there to support your kids, who knows what potential is being missed?

Suzanne:  Mind you…

Minister for Importance:  Yes, yes, I know what you’re going to say.  All those stay at home mums, doing nothing but getting their hair done all day.  My wife couldn’t be more different.  With all the volunteering she does in the children’s school she’s practically a member of staff!  She’s hardly lounging around all day collecting benefits. What sort of example would that be to set the children, especially their daughters?  They will be the adults of tomorrow, you know.  Some of them could be the scientists and innovators we need to revitalise the economy.  Just think what they are throwing away.