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Monday, 15 December 2014

Christmas Special Needs

Whenever you go to the theatre, you have to be willing to suspend disbelief. Perhaps we have to believe that the action takes place in a forest because there are some trees drawn onto a sheet on the back wall, or perhaps we are asked to believe that the actor who is on stilts is actually a horse.  For a school nativity play, audiences are asked to suspend their disbelief still further – we are asked to believe that a six year old with a towel on his head is a shepherd, and that the young girl who fluffs her lines is the pregnant mother of the son of God.

For a nativity play at a special school, we are asked to suspend disbelief even further still.  We are asked not to question the fact that one of the three wise men is holding a teacher’s hand, or that one of the angels is in a wheelchair – and of course, nobody does. Nativity plays and carol concerts at these schools are even more laid-back than ordinary school nativity plays.  They are joyful things.

A few years ago, Jamie was the star of his special school's Christmas play and concert; he was dressed as Santa Claus and, at the right part of the song, had to pop out of the “chimney” and go “ho ho ho”. The following year he was “first snowflake” and had to do a dance, spinning round in circles while all the other snowflakes span away, or melted, or something, until he was the only one left.  He did very well at these roles, even staying in character when a little girl with autism ran up to him in the middle of the performance and demanded to know what the hell he was doing.  As the years went by though, as Jamie got bigger and stronger and more difficult to handle, his roles became smaller.  Last year, he did not have a part at all; he was led into the school hall by two teachers, each holding one of his hands, clearly in an effort to restrain him.  It seemed to me that they might as well have wheeled him in Hannibal Lector style, in a straight jacket and mask.  Perhaps they feared he was going to eat somebody's liver with some fava beans a nice Chianti.

Then it was pointed out to me though, that Jamie was thirteen years old, and teenagers do not usually get leading roles in nativity plays, not even in special schools.  Some adorable disabled six year old is now getting all of Jamie's parts.  Damn those adorable disabled six year olds!

The funniest thing I ever saw at a school carol concert was when one class decided to do a rendition of “Do You Want to Build a Snowman” from Frozen (yes, I know it’s not a carol – and it was probably also a copyright infringement).  As a finale to the song, the children dressed one of the young boys up as a snowman, putting on him a white T-shirt, hat, scarf, and an orange cardboard cone on an elastic band as a carrot nose.  Unfortunately, the children dressing the boy decided to put the nose, scarf and hat on before the T-shirt, meaning that they had to pull the T shirt down over the other items, squashing the hat and crushing  the nose in the process.

It seemed to take forever for them to do it; after a minute or two I looked over to see if their teacher was going to intervene, but no, she appeared to be helpless with laughter.  Eventually though, long after the song had finished, they succeeded in "building" the snowman, even though the nose was a little bent and the scarf was under the T shirt.  Another teacher then bounded to the front of the stage to spin the young snowman around, revealing that the T shirt was actually on back to front, as big black buttons visible, drawn on his back.

Actually though, now that I come to think of it, that was not at Jamie’s school at all, it was my daughter Jemima’s (mainstream) school.  They do not have special needs at all there, unless you count needing to have rehearsed more as a special need.


Thanks for reading this post.  I am currently working on a follow-up to my book Don’t Let It Get You Down Syndrome, which will be a collection of stories about having children with special needs in the family at Christmas time.  If anybody reading this has any stories they would like to share with me, for possible inclusion in the book, please leave them (or a link to a blog post or similar) in the comments below.   I have not decided yet whether the book will be fiction or non-fiction, but either way, I need as many funny and/or heart warming stories as possible.

Tuesday, 10 June 2014

No Post Today

I am not going to be posting anything for a while.  I am writing a book.

It turns out that writing a book is really hard.  It is much harder than reading a book.

I need go and write it now in fact.  I need to stop making excuses.  Even my deciding to to write this short post was an attempt by my subconscious to sabotage the whole project.

Got to go.

Thursday, 27 March 2014

The Prisoner

"If ever you are going to be trapped in a tiny room for hours on end, then the downstairs toilet would be the best room for it to happen in.  Unlike, say, a lift, a sauna, or a cupboard, our downstairs toilet has running water, somewhere to sit down, and most importantly, it has a toilet.  It also has a small window that you could open for fresh air, or possibly even call for help from - or at least it would have had such a thing if we had not locked it in order to stop Jamie from throwing the toilet rolls out of it."

This, she told me later, was what Meg was thinking when, as you have probably guessed, Jamie trapped her in the downstairs toilet.  She had popped in for a few seconds to powder her nose, when the door closed behind her, and she heard a loud crash from outside.  Jamie had pulled the radiator off the wall, and it had fallen in front of the toilet door.

I imagine that many of you reading this have never seen a radiator that has been pulled from a wall.  I had not, until recently.  I would have thought that the act of pulling it from the wall would also have broken the pipes attached to it, leading to water gushing everywhere and a massive plumber's bill, but no.  Somehow, the pipes at the bottom of the radiator remained intact, and the whole thing swiveled away from the wall and landed in front of the toilet door.  Being a heavy radiator, and still being attached to the wall via the pipes, it would not move at all, and the door could not be opened more than a centimetre or two.  Perhaps it would have been possible to force the door open, but that would certainly have broken the pipes, and probably the door too.

So Meg was trapped.

Jamie, on the other hand, had the freedom of the house. He finally had the freedom to do whatever he wanted. He could eat all the chocolate in the sweet drawer, shred every piece of paper in the office, microwave the guinea pigs .... or he could just hunt around for where Meg had hidden the house keys, unlock the door, and go exploring around the neighbourhood.

How long would Meg be trapped for?  Well, I work in an office 30 minutes drive away, so if she could have called me at work, I could have been home in half an hour.  However, her mobile phone was on the kitchen windowsill, not in her pocket.  My working day was 9am to 5pm.  Unfortunatley it was only 10:15am, so it was over 7 hours before I would due to return.  Fortunately though, it was actually a Saturday, and I was not at work at all, I was upstairs, wondering what the crash was.  When I heard "Steve!  I'm trapped in the toilet!" shouted a few seconds later, I thought I had better go and investigate.

Saturday, 15 March 2014

Crack problem

We had forgotten to give Jamie a travel sickness pill.  Normally, we can drive at least 45 minutes without any risk of car sickness, and sometimes an hour.  This journey, according to the Satnav, was 52 minutes.  Trying to drive all the way without stopping would be a gamble.

We were twenty minutes into the journey when Meg said "Open Jamie's window just a tiny bit, and give him some fresh air."

Doing this would also be a risk.  We both knew that Jamie likes nothing better than livening up a car journey by throwing things out of the window - his shoes, his socks, my sunglasses, the Satnav - whatever he can reach really.  This is why we always have the car windows shut and the child locks on.

"Just a tiny bit then." I said. "Hold his hands while I do it - if I open it too far, you know what will happen."

So Meg held his hands, and I lightly flicked the relevant button.  I need not have worried about opening it too far. I judged it right first time, and the window opened by about a centimetre. Meg released Jamie's hands, and relaxed. There was no way that anything he could reach was going to fit through that tiny crack.

Or so we thought.  Jamie sat and studied the situation for a while.  He made no attempt to grab anything and force it through, but he scanned round the car with his eyes, mentally calculating whether anything was going to fit.  In an attempt to stay one step ahead, Meg moved everything that was less than five centimetres thick to the other side of the vehicle.

So we continued on our journey for about another minute or two.  All of a sudden I heard Meg shouting behind me.

"No Jamie!  Stop that!  Aaaargh! You naughty boy!  That was brand new!"

Startled, I looked in the rear view mirror.  I saw Jamie looking back at me.  There was something different about him.  Wasn't he wearing a baseball cap a few minutes ago?

Yes, even though a baseball cap looks as though it is as big as your head, the truth is that you can feed the peak of the cap through a very small opening, as Jamie knew instinctively you could, and had proved.  I would have thought that main body of the cap would have got stuck, but no, it did not.  Perhaps the wind took it and sucked it through.  It was all over in a second.
"Sorry."  said Jamie.  But I don't think he was.
I got the hat back eventually.  We were on a busy A road, and I had to drive on a few hundred yards before finding somewhere I could stop the car, then run back down the road.  There was no footpath, so I was dodging speeding cars and lorries, to rescue the cap that was sat in the middle of the road, on a white line.  It was good exercise for me, and the way I see it, the fact that I could have been run over and killed, just makes life seem all the sweeter.

That's not really true, I just like to end on a positive note.

Oh, and one other positive note - the unscheduled stop broke up the journey, and Jamie did not get travel sickness after all.  Hmmm ... I wonder if that was his plan all along?

Wednesday, 19 February 2014

Heeeeere's Jamie!

Jamie used to kick holes in his bedroom wall.  We are not sure why. At one point, a few months ago, there were holes in the wall, pieces of plaster everywhere, the bed was broken, the curtain rail and curtains were in a pile in the corner of the room, and there was so much mess on the floor that you could not see the carpet.  It was like a crack den.

So, we got a man in. A real man that is, one who can do handyman stuff, unlike me (my father-in-law as it happens), and had the walls reinforced with wood panelling.

Since we had the walls reinforced, Jamie can no longer kick holes in them, so he kicked a hole in his bedroom door instead.  It took him ages to do it; you have to admire his dedication - it was like a cross between The Shawshank Redemption and The Shining.

I think he regrets it now, because it means we can spy on him in his bedroom, from the corridor.  The other day we were sat outside watching him play with his Toy Story figures.  Jessie was in a lot of trouble, which involved screaming, then Buzz and Woody rescued her, I think, or possibly murdered her - it's impossible to be certain.  Anyway, the point is we are normally forced to leave the room when he is playing, but now he cannot stop us watching.

So, I don't mind the hole too much.  One thing does trouble me though, and that is the discovery that the insides of our internal doors seem to be made of cardboard.   

Monday, 3 February 2014

Vintage Pornography

I have a new smart phone.

It looks great and works perfectly.  I mention this because I want to remember the moment. I know it will not last for long, because soon, Jamie will break it.  Perhaps he will knock it out of my hand, and it will fall on the floor and shatter, like the last one?  Or perhaps I will leave it lying around and he will throw it out of a first floor window, like the one before that?

I am just savouring the moment - enjoying being at the forefront of technology  (well, within sight of the forefront) for once.  I know that before long my lovely phone will be destroyed, and I will have to go back to using that little blue phone with the scratched screen that I bought in 2002 that Jamie, for some reason, never feels the urge to destroy.

While feeding Jamie yesterday, I noticed that my new phone has a voice recognition feature that allows you to use Google to search the internet by speaking into it rather than typing.  I decided to test it out, and thought for a second about what I would like search for.  

"Black and white movies" I said.

Jamie, sat next to me at the time, objected to this for some reason, and shouted out "No daddy!".  My phone heard what he said, and tagged his words onto the end of the search.  Unfortunately though,  because his diction is not great, it misheard him.  I looked at my phone and found that instead of Googling "black and white movies no daddy" I had Googled "black and white movies nudity."

What worries me about this is that I know Google records all these search terms, and I am probably on a list now.  If old age pensioners start disappearing in my area I am going to get a knock on the door.

I am just glad I did not say "children's movies."

Sunday, 2 February 2014

The Body in the Library

I do not know why I kept on taking Jamie to the library.  We made many trips when he was young, and they never went well.  Like Charlie Brown running up to kick the football, thinking to himself "This is the time that I will finally get to kick it!", I kept on thinking to myself "This is the time we will finally have a nice father-son bonding session over some lovely picture books, and it will not end in frustration and/or humiliation".  But I was always wrong.  Jamie always pulled that metaphorical football away.

The first time I ever took him, he was a toddler, in his pushchair.  I was sure he would love it there, because he loved books and bedtime stories, and surely the sight of shelves full of books would bring a smile to his face?  I wheeled him through the sliding doors, and turned the pushchair around to see the look on his face as he saw all the books. When I saw his face, it was not the look I was expecting - he did not look happy.  In fact, he looked a little nauseous.  Oh dear. He started to retch, and I quickly reached out just as he threw up, and I caught it perfectly in my cupped hands.  I do not know if you have ever found yourself in a public library with both hands full of warm baby sick, and four librarians staring at you in a concerned manner, but let me tell you it is not a pleasant experience.  I had no idea what to do, but as the vomit began to seep through my fingers, I know that I had to do it quickly.

Over the next few years, despite the unpromising start, we continued to go back again and again. Each time it was a disaster, but for different reasons.  Sometimes Jamie would run around the library giggling or screaming, sometimes he would jump on other children and demand cuddles.  One time we foolishly attempted a parent-toddler story-time session, and Jamie kept snatching the book from the poor old lady who was trying to read Commotion in the Ocean to a small crowd of bemused toddlers and irritated parents.  One time we did not even make it into the library because on the way Jamie unscrewed the lid from his water bottle and poured the contents down the front of my trousers.

But it was the last time I took him that really sticks in my mind.  I say "the last time" and that is exactly what I mean.  We can never go back.

Jamie and I arrived at the library in the middle of a busy Saturday afternoon. Holding Jamie's hand as I strode confidently through the doors, I smiled at the librarian behind the counter.  I did not recognize her, but I assumed she remembered us; I think most people probably remember us.  My intention was to pick up a few picture-books for Jamie and a couple of novels for Meg, but I thought it would be nice to show Jamie round the books and perhaps read a few stories to him first.  I have no idea why I thought it would be a pleasant way to pass the time - clearly I had forgotten the previous dozen-or-so visits.

Nevertheless I was as optimistic as ever as I led Jamie towards the children's book section, where I tried to draw his attention to the picture books.

"Ooh look Jamie, it's There's An Ouch in My Pouch - we like that one don't we?

No Jamie, don't go over there, those books are for older children, you wouldn't like those.

What's that you've picked up?"

It was a Kestrel For a Knave and I was momentarily distracted by the memory of reading it myself at school and noticing that it seemed to be the same edition.  That was the point at which Jamie decided to launch it across the library; it fluttered over my head and landed a few metres behind me with a soft thud. I span round quickly to pick it up, but that was a mistake; I should have restrained Jamie first, because while I was picking it up I heard another fluttering sound followed by a soft thud, as The Voyage of the Dawn Treader landed nearby.  I turned back to face Jamie, and narrowly avoided being hit in the face by Stig of the Dump.  In the time it took me to reach him he also managed to launch a collection of Aesop's Fables and a Rainbow Fairies novel (altogether an eclectic choice I think you will agree).   Flutter, Flutter. Thud! Thud!

He chuckled as I told him off and made him pick up all the books.  Even though I was a little cross, I had to admire the fact that he had thrown the older children's books and not the picture books - it was as though he had instinctively known that the small paperbacks were going to be more aerodynamic than the big books for preschoolers.        

After another couple of failed attempts to interest Jamie in the picture books, I abandoned the idea and decided instead to focus on getting something for Meg.

I lead Jamie by the hand over towards the "G" section of adult fiction, looking for a Phillipa Gregory novel that Meg might not have read.  As soon as we got near the shelves though, Jamie started trying to grab the books, so I had to restrain him by holding onto both hands.  However, he then started trying to knock the books off the shelves with his feet, and I was finding it very difficult to stop him.  I should have given up and taken him home at that point, but I was determined to get Meg something to read, so I came up with a solution - I put him on my back.  Jamie loves a piggy-back, so I was sure he would co-operate, and if he was behind me, he would not be able to reach the books, right?  Well, yes and no.  Because I stood far enough back from the books, Jamie could not reach them; however, I forgot about the shelf of books behind us. Jamie did not forget.  My heart sank as I heard the sound of Catch 22 flying across the room and landing in Philosophy and Psychology.  I took half a step forward so that he could not reach the books behind him, and I hoped he still could not reach the books in front of him. I saw his hands reach out, and sure enough, he could not quite reach the books - however, he could reach the shelf itself.  What happened next seemed to happen in slow motion.  I saw him grab the shelf with both hands, and I felt him tense up as he put his not inconsiderable strength into his grip.  For a split second I though he was going to pull the whole shelf down, but then I felt his body twist, as he used his knees to throw me off balance.  My own knees buckled, and with Jamie's weight on my back I went down hard to the floor.  Lying in a heap, I groaned.  It felt as though several of my limbs were not spread out at unnatural angles, and my body was crumpled and squashed in a way that made me worry for my internal organs.  What worried me most though, was the thought that Jamie must also have been hurt when we fell.  Had I landed on him?  Surely that would break a rib or two, or worse?  What if he had banged his head when he fell?  He was still on my back so I could not see him, but he had suddenly gone very quiet.  After what was probably only a split second, I felt him move again.  He was okay!  I realised I could not be angry with him for knocking me down - for a second I had thought he might be hurt, and then I had discovered he was okay, and I was just so relieved that I felt no anger, just love.  I felt him moving again.

Then I heard a familiar fluttering sound, followed by a distant soft thud, and a low chuckling in my ear.


Sunday, 19 January 2014

Poster Boy

This is my favourite picture of Jamie as a baby. 

A few years after it was taken, we had it blown up to a poster size and we gave it to the special needs nursery that Jamie had started attending. A few weeks later we were told that the nursery had received a couple of complaints about the poster from other parents.  It seems these parents thought it was insensitive of the nursery to put up posters of beautiful, nomal, healthy babies, when the parents were struggling with disabled children of their own.  

Apparently when the parents were told that the picture was of one of their regulars, who had Down's Syndrome, the complaints were quietly withdrawn.


Jamie used to enjoy having a bath, but for some reason he went off it when he was aged about five or six.  At first he used to protest by splashing around in the water, making a mess, and getting told off.  Eventually though he came up with an easier solution - he flushed the bathplug down the toilet.  He also flushed the replacement bathplug down the toilet. 

Wednesday, 15 January 2014

Down's Spectrum

Jamie has Down's Syndrome and he is also on the autistic spectrum.

Raising Jamie has made our lives difficult.  I would describe it as being somewhere between The Curious Incident of the Dog in the Night Time and We Need to Talk About Kevin.  There cannot many people in my position, reading Mark Haddon's book and thinking "I will see your Autism and raise you a Down's Syndrome", but I did.  On the other hand though, I cannot really complain because Jamie has never gone on a killing spree.

Sometimes I tell people about Jamie's dual conditions and then watch their faces as they process the information. Most people do not know what to make of it.  I see them wondering whether he fits the Down's Syndrome stereotype (affectionate, fun loving, gentle) or the autistic one (anxious, distant, brilliant at counting cards in a casino). Surely he cannot be both, as they seem so different?

More often than not, after a few seconds deliberation, they ask the same question:

"Wherever did he get his ginger hair from?"

I don't know what it is about the slightly awkward social situation of being around a disabled child that makes people feel the need to lighten the mood by implying that Jamie's paternity is questionable, and that perhaps my wife has been a little free with her affections and that we are all in fact living a lie, but they do.  Sometimes I see them mulling over the fact that my best friend at the time, Andy, also had ginger hair, and wondering whether or not to mention it.

I am not worried of course.  I know that both Meg and I have relatives with ginger hair, and I know that the only way Meg would ever have touched Andy would have been to push him from a tall building.  Nevertheless, it does seem to bother some people.

What is Down's Syndrome?

It is a genetic condition. A lot of people think that Down's Syndrome is associated with missing chromosomes, but actually the opposite is true.  People with Downs Syndrome actually have an extra chromosome - they have inherited three copies of the genes on chromosome 21, rather than the usual two.  Of course, I do not really know what that means, not being a biologist.  A genetics nurse came round to my house when Jamie was a baby, and tried to explain it to me using diagrams and leaflets, but it did not help.

What is Autism?

People do not seem quite so keen to explain this one to me.  I don't think anyone really knows.

Tuesday, 7 January 2014

Seriously? In January?

When Jamie came home from school today we asked the bus driver if he had been well behaved.  She told us that at one point he escaped from his harness, took all his clothes off, and ran around the bus naked, but other than that he had been fine.