Tabletop Mountain

This video is a sort-of-sequel to Don't Let it Get You Down Syndrome, written for an anthology themed around the modern board game hobby. Hope you like it.

Little Red Fox

Jamie got hold of one of my Christmas presents today.  It was my Walnut Whip gift box which had about ten Walnut Whips in it.

You know how when a fox gets into a hen house, it (so I have been told) eats one of the hens but kills all the others?  Well, that pretty much describes what happened with Jamie and the Walnut Whips.

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.

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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.

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.

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.

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?

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.   

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."

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.

  

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.

Yes! 

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. 

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.

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.

Upside

In the spirit of "looking on the bright side", here are a few good things about having a disabled child: 

Free Parking Anywhere You Want
...well, anywhere except a taxi rank. I found this out the hard way about a week after getting the "blue badge".  I had just popped in to the butchers on the high street for two minutes and left my family in the car, and when I returned there was an ominous sticker on the windscreen. Apparently Meg had wondered why the traffic warden was taking so much interest in the car, but had not considered actually switching to the driver's seat and moving it.  After paying the fine I think it took me about six months of not having to pay for pay-and-displays before I was back in credit.

Anyway, apart from that, being able to use the disabled spaces is brilliant. Being allowed to park on double-yellow lines is quite surreal; it seems a bit too good to be true.  If there are double yellow lines on the road that means it is not a good idea to park there, doesn't it?  So why make exceptions?  Every time I do park on double-yellows, whenever I return to the car I expect to find a little sticker on it telling me I have misunderstood the rules, and that another six months of parking charges savings has disappeared.  So far so good though. 

Immunity
It seems to me that no matter how badly Jamie behaves, no other adult will ever tell him (or indeed us, his parents) off.  I imagine that if, when I was thirteen, I had climbed into the passenger seat of a stranger's car and angrily shouted my demand that he take me to Newcastle, I would have received a stern rebuke, and possibly a cuff around the ear.  When Jamie did the same thing last summer though, it was met with an amused chuckle; the driver had a good laugh with me when I arrived, out of breath and a with a look of desperation in my eyes, a few seconds later.

I have been in situations where Jamie's victim has taken a few seconds to realize that he has Down's Syndrome, and in those few seconds I have had a glimpse of what it must be like to be the parent of an ordinary delinquent child.  Once, at a car-boot sale, a middle-aged woman started telling Jamie off because of some misdemeanor he had committed, when the younger woman she was with whispered something in her ear, and the telling-off stopped immediately. The older woman then apologized to me and shuffled off.  Just the other day in a soft-play area, a parent came to me me to complain, not unreasonably, that Jamie had been spitting at her child at the top of the spiral slide; she only got as far as explaining the facts when two of her friends dragged her away telling her to leave me alone.

You see?  It is immunity.  It is just as well really, or else we would all be in prison by now.         

Cashing in
We have made a few quid over the years from TV shows that buy funny home movie clips.  For example I got £250 for the footage the time I sat in a ball pool with Jamie and asked him for a kiss, but instead he attempted to gouge my eyes out while giggling manically.

It's just a shame that we have also missed so many potential £250 incidents.  I only wish I could film Jamie every second of every day, I would make a fortune.

Theme Parks
The fact that amusement parks like Alton Towers and Disneyland let us go on the rides without queuing is one of the best things ever.  The only downside is that we are only allowed to queue-jump if Jamie is actually going on the ride with us.  This means that when we went to Disneyland a few years ago, I did not get to go on Space Mountain at all, but I did get to go on "Small World" three times.  


No Sports
Jamie's special needs school does not seem to go in for competitive sports.  In fact they appear to be ideologically opposed to them - in a meeting once, Meg suggested that they have a sports day at the school, and everyone looked at her as though she had suggested ethnic cleansing.  Anyway, at least this means we don't have to go and pretend to enjoy watching him play football once a week in the wind and rain, like my parents did with me.


Cuddles
This is the best one.  How many dads still get long enthusiastic cuddles from their teenage children?  I do.

A bad day for Cascades Swimming Pool.

What's the worst thing that has ever happened to you at a swimming pool?

A friend told me that the worst thing she ever saw was when a little boy told his mother that he needed to go to the loo, and the mother had said "Just do it in the pool," so the little boy stood on the side, pulled his trunks down, and peed into the pool. Well, that's not too bad is it?  Quite funny actually.  My sister told me that she, while pregnant, once threw up in the shallow end of her local swimming pool.  That is pretty bad actually.  But I think that what happened to me in Cascades pool in July 2013 was worse.

I have been taking Jamie swimming regularly for several years - I have a pretty good routine for getting changed that effectively minimizes the likelihood that he will damage something, or escape and cause himself or someone else to drown.

These are the steps to the routine:

1. Get changed together in the group changing room
2. Lock the group changing room with the key.
3. Hold Jamie's hand while I put the key and all our clothes and valuables in the locker,
4. Lead Jamie to the toilet.
5. Go in the cubicle with him while he uses the loo.
6. Quick shower for both of us.
7. Go swimming.

On the ill-fated swimming trip in July, steps 1 and 2 went according to plan, but at step 3 there was an unexpected problem.  I put all our belongings in the locker, and put the pound coin in the slot, then turned the key to lock it, and nothing happened.  The locker had taken my money and refused to lock.  So there I was, wearing swimming trunks, trying to restrain an increasingly impatient twelve year old with one hand and trying to fix a broken lock with the other hand.  When I realised I could not fix it (due to a complete lack of any skills relevent to locker-fixing), I had a dilemma - if I went looking for a member of staff to help me I would have to leave my valuable unattended, but unpacking the locker and taking everything with me while holding on to Jamie with one hand seemed like asking for trouble.  As I stood there, paralyzed with indecision, Jamie pulled free of my grip and ran off towards the toilets; I saw him go inside a cubicle and lock the door.  Thinking that he would probably be fine for a few moments, but conscious of the fact that step 5 (above) states that Jamie should be supervised in the toilet cubicle, I ran off to find help and soon returned with capable-looking member of staff who had a screwdriver.  While he set about fixing the locker, I tried to coax Jamie out of the toilet cubicle.

I had thought that the worst-case scenario was that Jamie would either refuse to come out of the cubicle, or that perhaps while he was in there he would flush all the toilet paper down the loo; but no, he managed to surprise me with something much worse.  When he eventually came out of the cubicle, he was holding his hands in front of him, fingers spread out, and they appeared to be covered in melted chocolate.  I was confused.  Where could he have got chocolate from?  Then, the full horror dawned on me.  It was not chocolate.

Quickly, I grabbed Jamie by both arms, and let him towards the sink at the back of the room.   I turned to the helpful staff member, who was staring at us with his mouth open, and muttered "Sorry mate, I think you're going to have to clean the inside of the cubicle."  When I reached the sink and started washing Jamie, he did not resist, thank goodness; if he had decided to struggle against me...well, I cannot bear to think about it.

While all this was going on, another member of staff came in from the pool side, looking for me and Jamie.  My wife, who had by now got changed in the ladies' changing room and was in the pool, had been wondering where I was, so had sent a lifeguard in to the men's changing room to check her husband and son were okay.  I indicated to him that we were okay.  I imagined him going back to her and saying "Is your son small, with Downs Syndrome, ginger hair, and covered in poo?  If so, he is fine."

Eventually, after a thorough scrub, and another apology to another appalled-but-trying-not-to-show-it member of staff who had to clean up the sink area,  we progressed to step 6 (although I thought it prudent to have a longer shower than originally scheduled), and eventually step 7.  Swimming.  At last.

As I made my way out towards the pool I avoided making eye contact with the poor guys who were cleaning up Jamie's mess.  Half of me was feeling sorry for them, the other half was thinking "This is nothing, you guys only have to deal with this today, this is my life!"  The other half (well, you know what I mean) was thinking that if their lockers had been working properly, none of this shit whould have happened in the first place.

Adventures in Cranial Osteopathy

When Jamie was a baby, his head was a little misshapen. It seemed to be a little flat at the back.  We mentioned this to our doctor, and he told us that this was very common, and it was because Jamie was sleeping on his back, and his soft skull was moulding to fit the mattress.  This sounds worrying, but he assured us it was very common and Jamie would soon grow out of it. 

A friend however, told us that she had experienced something similar with her child, and that a cranial osteopath had helped, although it was quite expensive treatment.  I had never heard of cranial osteopathy, and had no opinion as to whether it was proper science or charlatan quackery, but by that point I was in the zone where I would pay anyhing for the slightest possibility that somebody could help Jamie with anything.  So we made an appointment.

The osteopath was a very nice young lady.  She seemed very professional, apart from the fact that she operated from a "clinic" in her parents' house.  It was a nice house however, and she had certificates on the wall, so that made up for it, I guess.

Over the course of several weeks, Jamie had his skull gently manipulated by this young lady.  Very gently in fact.  Sometimes she just appeared to be holding his head, and I wondered if she was doing anything at all. 

A couple of months and a dozen or so expensive sessions later, the osteopath told us that Jamie was a lot better now.  Looking at him, I was not so sure; his head still seemed rather flat at the back.  However, the osteopath had proof - she produced two photographs.  Putting down the first one on the table in front of us, she said "This is a picture I took of Jamie just before the first session."  We looked at the photo, and the misshaped head was clear to see.  Then she put down the second photo, and said "I took this photo last week, and you can see a clear improvement."  We both peered at the photo, looking for improvement, but not really seeing it.  There was an awkward silence.  All three of us stared at the pictures.  After a while, a furrow appeared on the osteopath's brow.  Then she blushed a little.  Eventually, she said "Hang on.  I've got those the wrong way round..."

How to Brush Jamie's Teeth

Here is a beginner's guide on how to brush the teeth of a child with special needs, in ten easy steps.

1. Approach the subject, keeping the toothbrush away from the swinging hands and avoiding the kicks.
2. Take his dummy out of his mouth and put it to one side.
3. Remove anything from his hands that could be used a s a weapon.
4. Try to persuade the subject to co-operate, then quickly accept that that is not going to happen.
5. When the subject shouts "HELP ME!" try to slide to toothbrush into his mouth.
6. Grip the toothbrush in your own teeth while you use both hands to restrain the subject to prevent him from grabbing the toothbrush.
7. Realize that if you are using both hands to restrain the subject, you do not have enough hands to actually do the teeth-brushing.
8. Consider, for a moment, trying to brush his teeth while gripping the toothbrush in your own teeth, before quickly realizing that that is a ridiculous idea.
9. Consider sitting on/tying up/sedating the subject, but keep saying to yourself "imagine social services are watching" over and over until you come to your senses.
10. Get his mother to do it instead.

The Ten Best Picture Books for Kids, for Adults.

I have been reading bedtime stories now for thirteen years, every night, sometimes three or four times a night.  Yes, I have read a lot of picture books and I consider myself something of an authority in the genre. There was a time, many years ago, when I aspired to be an authority on Shakespeare or Dickens, but now I think I have to accept the fact that my expertise is in Dr Seuss and Julia Donaldson.

Anyway, I don't mind telling you, most picture books are awful.  Lots of them are just plain boring, some of them infuriate me by having rhymes that don't actually rhyme properly.

Not the books on this list though.  These books are all great fun.  I have selected ten books, in no particular order, from the authors that I like reading out loud.  They are the ten children's books that I think parents would most enjoy.


A Squash and a Squeeze - by Julia Donaldson

Most of Julia Donaldson's books are fun to read, and by far her biggest success was "The Gruffalo", but my favourite of hers is "A Squash and a Squeeze".  The story moves along at a great pace, and the rhythm and the rhymes are surprising and fun.

The Toy Story Chainsaw Massacre

Jamie loves Toy Story.  He loves all the characters too, although you might be forgiven for thinking he hates them all and wants to kill them in painful ways.

Poor Buzz

The First Full Time Model With Down's Syndrome

The first ever full time model with Down's Syndrome?  That's what we thought when Jamie was younger.  Just look at this picture of him as a toddler.  Isn't he the most adorable child ever?  I mean, I know I'm not exactly unbiased, but come on ... surely it's just a statement of fact that he was a beautiful little boy?  Surely he was destined to be modelling clothes for Debenhams within a few years, and appearing in television adverts for breakfast cereals?  

He was so photogenic, and loved putting on a coy little smile for the camera.
  
Look at this school photo from when he was six.  Don't you just want to pinch his cheeks?

Obviously this kid has a great future ahead of him parading up and down Paris catwalks, the face of Dolce & Gabbana, and the subject of a great deal of media interest?







Yes, I know some people reading this might think the idea of pushing your special needs child into the spotlight is cruel and exploitative, but to those people I say this - shut up!  He won't care about that if it gives us enough money to take him to Disneyland.

Well anyway, it was all going so well (by which I mean I had done absolutely nothing about it, but still thought it was a realistic option for the future) until recently.  For some reason, over the past year or so, Jamie has developed a rather annoying habit - instead of smiling for the camera, he has started sticking his tongue out instead.

These are more recent photos:

We did not buy his official school photo this year.   We were sent miniature proofs - about ten of them - all with his tongue out.  I can imagine the poor photographer pleading with him just to give a nice smile for a split second.  "Come on Jamie, please smile, this is my livelihood."

Why does he do it?  Because he knows it upsets us.  He thinks it's hilarious when we yell "put your tongue away" at him.  Well, it's going to backfire on him.  He won't be laughing when he finds out where we are going on holiday next year (hint - it's not Disneyland).

So that's it - modelling dream over...unless...unless there happens to be a modelling agency representative reading this who is desperately searching for a model for a photoshoot where a special needs child is sticking his tongue out to camera.  If so, please feel free to get in touch.  

Expecting Adam - a book review

Expecting Adam is the "true story" of a mother coming to terms with the fact that her son has Down's Syndrome.  I first read this book about ten years ago, shortly after my own son Jamie was born with Down's Syndrome.  It was bought for me by a well-meaning relative who was hoping that the book would make me feel better about Jamie's condition, and it almost did.