We went shopping again the other day. Back to That Supermarket, the one that Dad likes because it's cheap but The Boy hates because it has people and queues and no self-service checkouts. I'd like to pretend that my decision to involve him in the shopping experience was a deliberate one because I wanted to teach him some independent life skills when he's older, but if I'm honest I took him with me because I couldn't be arsed going while he was at school.
We made it round in approximately seven minutes. For someone with cerebral palsy, he can whizz round a supermarket in a speed Dale Winton would be proud of. There was stuff in the trolley, some of it looked green, success. We got to the till, a bit of a queue but not too bad. Dad had even remembered to bring his own carrier bags. What a virtuous pair we were.
Then an old dear shuffled up behind us in the queue. She had half a dozen eggs and that was it. I thought I would set an example for my son. "Would you like to go in front?", I said to her, stepping aside and gesturing as if I'd just offered her a Damehood. "Thank you", she said, "very kind". I smiled to myself. That warm feeling of pleasing someone. Knowing she thinks I am now a perfect father and a perfect human being. All is well.
As she stood in front of us in the line, now inches away, I didn't spot The Boy's face. I was too busy trying to work out the number of syns in a flapjack. If I had, I might have spotted the reddening. I might have pre-empted what was about to happen.
"BIT RUDE!", he shouted at the top of his voice. Oh dear, no build up with this one, whatever had upset him had gone straight to the danger zone. "YOU!" he yelled, pointing at me, "HOW DARE YOU LET AN OLD WOMAN PUSH PAST YOUR SON. HOW RUDE! RUDE MAN! SHE WAS BEHIND US! YOU LET HER PUSH IN!!!".
Here we go... Another outburst. The old dear turned round, glaring. People staring. Pointing. Whispering. The Boy continued right the way through the queue and out of the shop. Ramming me with the trolley. Screaming, hitting. But finally, after years of angst and worry, I don't care as much what people think when things go awry. Maybe Mr People Pleaser has finally come to terms with his son's behaviour. Or maybe it's just that when an eleven year old behaves like that it's more obvious something is different with him than when he was a toddler...
We got outside, and as always seems to happen the calmness and quiet of the car brings him back round. And this might seem strange for some people to grasp, but I apologised to him. And I didn't do it just to try and placate him. I'd forgotten to see the world as he sees it. In his world I'd broken the rules. Rule No 11,967 filed in his head under 'Queueing', the rule I mentioned in my blog last week, the rule that you never push in. I'd broken it.
I imagine this is the way life is for The Boy... in his head there is a huge filing system, compartmentalised into Rules for Living. The only way he can make sense of the world. Things you do and things you don't do. Learnt over the years with hundreds of new rules added each day. And every outburst is when there's a variant to that. When the rules suddenly change. That's why routine gives him comfort. For years I tried to introduce the concept of a cooked breakfast once in a while. But he couldn't cope with that. Because breakfast is a bowl and a spoon. It isn't a plate and a knife and fork. That's dinner. And for him to be able to cope with that seemingly small change in routine meant in his head he was rewriting and then re-learning the Dinner rule, the Breakfast rule, the Cutlery rule, the Days of the Week rule, and so many other rules that he'd spent years mastering and now all of a sudden they had to be re-learnt and re-cross-referenced and filed.
And now I've ruined the queueing rule. Yes, he knows now that people can push in sometimes. But what is the rule? Did I let her in front of us because she's old, or because she has six eggs, or because she was wearing a green coat? Was it because it was 4.06pm, because it was a Wednesday, or because it was raining outside? The Boy can't be sure, so all he can do now is write a rule to cover every possibility. Until something happens to change it. And then they can all be re-written again and so this confusing life goes on and on and on...
It does me good to try and understand the way the world appears to him sometimes. It makes me appreciate him even more, to be almost in awe of him and others like him when I think of the battles that rage inside their heads daily. And to remind myself just how far he's come. Yes, I need to help him to work on his outbursts and controlling his aggression. But it will come. And it will come by trying to understand him that little bit more each day.
So, today Dad has added Rule No. 784,678 to his own Rules for Living. To always, always remember to look at the world through the eyes of another. It's amazing what you can learn.
Well, all was going well in the Land of Perfect Parenthood, and then without warning Crap Dad popped in for a visit the other night. He's normally on days, especially the early morning shift, but on Sunday he decided to do the night shift.
All was quiet in Rainman Towers. The bath had passed without incident, the hair had even had a wash, one fingernail had been trimmed, we were doing well. The Boy was settled early in bed, Dad had washed the school uniform ready for Monday morning well before the usual 11.30pm knocking on the ceiling from the downstairs neighbour to signal the end of the spin cycle. All was good. And so Dad decided to take his delicate frame to the Land of Nod. And then fell into a blissful sleep.
What happened next is a bit of a blur. I like to think like all parents I am a light sleeper... one eye forever open to guard over our most precious possessions. And our children. But on Sunday night something happened and I'm not sure what.
It's all a bit vague from hereon in, and that's because it's The Boy's version of events... I remember none of it. And I still don't know. He maintains this is how things went, but I have no clue. All I know is that the interlude will have started with The Boy entering my bedroom with the lightness of touch and subtlety of a dawn police raid. The time is "dark":
The Boy: "Daddy, I've wet the bed"
The Dad: "Which bed?" (I like to think the fact I asked this question was a clue that I wasn't properly awake. We only have two beds. I was lying in one of them.)
The Boy: "My bed"
The Boy: "Can I come into your bed?"
The Dad: "No. There's no room. You'll have to get up".
I remember none of this conversation. I only know about it because at 3.30am I woke up. And I heard a noise in the lounge. So I went in there and the light was on and sitting on the sofa wearing nothing but a cushion was The Boy. "What are you doing?", I asked.
"You said I had to get up...", he said.
I have no idea how long he'd been sitting there. I went to bed at 10pm. It could have been hours. I'm sorry mate, I really am.
So there you go, Crap Dad didn't wake up for his son. And I don't know why, it's not like getting up in the night isn't a regular occurrence. I racked my brain to work out why on this one occasion I didn't wake up properly. And there's only one thing that was different on that Sunday to any other day.
It was the day I started Slimming World. And that's why I'd gone to bed early, to cope with the pain. And so I've done some research. And I can only assume that the events that took place on Sunday night were hallucinations... as a result of malnutrition.
So parents everywhere, let's not let this happen again. See this as a warning. I urge you, rise up and eat. Take the battle to the fridge. Throw away the Muller Lites. Bring back the Pringles. For the sake of children everywhere, rise up and eat.
How many syns are in a six pack of Wagon Wheels?
I've mentioned before about the worries for the future... that period of time when The Boy becomes The Teen and then The Man. But it seems I've been worrying needlessly. The Boy has got it all mapped out.
The other day his friend TheBoyWhoLikesWarwickDavis came over to play again. When I was giving him a lift home the two of them chatted in the car like I'd never heard them talk before. One sat in the front seat, the other in the back, and that lack of facial contact seemed to free them up, making the words come more freely.
Apparently they are opening a Computer Shop when they're older. They have it all planned out. They are going to sell computers for a million pounds each. They will need a truck as they're going to repair computers too. That will cost ten pounds. Everything is either one million pounds or ten pounds. There are no other monetary values.
Their friend, TheBoyWithLimitedSpeech will be a security guard at their house, because they are going to be rich. They will drive a gold car. A limo. And have a diving board (worryingly, there was no mention of a swimming pool). They will buy a McDonalds and charge people ten pounds to go in. They will buy a movie too. I think they meant cinema, but by this point they were far too excited to worry about little details like that. They will employ slaves to do the work, and pay them ten pounds. TheBoyWhoLikesWarwickDavis will make his Nana a slave as she works hard. I will be allowed to visit their house. It will cost me ten pounds. Neither of them want to be boss, because they both want to drive the truck. Girls aren't allowed in the shop or the house. They didn't mention their plans for the Customer Service department...
It was lovely to spend five minutes just listening to them trying to out-do each other, getting more and more animated. This scary place, the future, that often causes me so much worry, filling every bit of them with delight and wide-eyed wonder. We dropped TheBoyWhoLikesWarwickDavis off home, and although I tried to talk about the Computer Shop again, the moment had gone, packed away and stored for another day.
Then this morning as we're driving to school, out of the blue The Boy suddenly said, "will you help us find somewhere to build our Computer Shop?".
I will, mate, I will. For ten pounds I'll crawl across every inch of the planet to find the finest spot in the whole of the land. I'll dig the foundations with my bare hands and then lay brick after brick after brick for the rest of my days until we have the biggest, brightest, bestest Computer Shop that's ever been built.
And then you will live there happily ever after.
The Boy hates standing in line. Queueing. Some schools seem obsessed with it. I understand it can be difficult to get 32 five year olds to walk in an orderly fashion to assembly, but some take it to extremes. Children made to line-up to go to the toilet, the playground, to breathe... And in my experience, there's a direct correlation between how much the school want children to stand in lines and how crap a school they are. The worst schools, and we've been through a few, seem to be the ones trying to create their own Foreign Legion, where conformity and lining up mean far more than creativity and expression ever will.
I'm bound to say that, given I have a kid who refuses to line up. I remember his first school, they were never happier than when the children were all in a line, filed alphabetically, marching in single file. But if there's one thing The Boy hates, it's a line. A queue. It took them eighteen months to realise that if they took him out of the line the scratching, hitting and biting of other children stopped.
At first the SENCO (Special Needs Coordinator) told me my son was just 'bloody-minded'. That he always wanted to be at the front of the line, he was spoilt and was just trying to get his own way. But for The Boy it was never about being in the front of the line. All he wanted to do was avoid the middle. The middle of the line is awful. People in close proximity, crammed in, claustrophobic. Nowhere to go, no escape. Just people. Everywhere. With their noises and smells and breath. Awful, terrifying people. Trapped front and back.
For the whole school year The Boy was forced to stand in lines. The words weren't there to tell people it HURT. Physically hurt. So he did what our instinct teaches us to do when we feel cornered and vulnerable. He hit out. Went wild. The urge to preserve himself and protect himself kicked in. And then eventually he learnt that if you keep hitting out people won't make you stand in the line anymore. He didn't hit out to hurt people. He hit out to make his own pain go away. And he hit out because it was the only way he could make himself heard.
It became a battle of wills before a new teacher took over the next school year. And on the first day she suggested to The Boy that he stand at the back of the line. That day the hitting stopped. He could dawdle a bit, put some space between himself and the other children. He could breathe again. And the pain went away.
I'm not sure why I'm reminded of this today. It started because we went shopping to ALDI and The Boy was once again faced with the queue to eternity. But it's also because for a long time I wanted a child who would just follow the others. Who would stand in line. Who'd conform. Who wouldn't embarrass me with outbursts, quirky behaviours and strange noises.
But The Boy will forever dance to a different beat. And surely that can only be a good thing. Children shouldn't always be made to stand in line and conform. They have a lifetime of that ahead. Let them find themselves first. And once they have, let them run free awhile and dance among the stars.
Today is Father's Day. My eleventh one. And The Boy still calls me Daddy. I've tried the last couple of years to suggest he's getting a bit old for that now, and that he might want to call me Dad. He will agree, and state that from now on he will call me Dad. And then continue to call me Daddy.
I suppose in his mind it makes no sense. Why should I have suddenly changed my name? To him, I might as well have woken up one morning and spontaneously declared from that day forth I wish to be known as Janet.
It doesn't bother me being called Daddy - it's only for his benefit really. I guess it's me wanting him to conform a bit more again - it's just another little quirk that marks him out as different. He's tall for his age, and given the amount of screaming he does at the injustice of the world, he has a deep, husky voice to match. Throw into the mix a lack of volume control and a penchant for some tastier words in the English language and suddenly the word 'Daddy' at the end of the sentence just seems really out of place.
He will use the word 'Father' too, if he feels the situation needs some gravitas. He learnt it from Star Wars. "I am your Father... I am your Father" he used to repeat constantly to anyone who'd listen. Nowadays its use tends to be saved for when he's angry with me, when a more formal declaration is required. "I wish I had a nice father!", or "I wish you weren't my father!". It's always accompanied with a howl and a pained expression on his face that Judi Dench would be proud of. Saved for really extreme, seemingly life-or-death occasions, such as when I suggest we might sit together to eat our dinner, or he might want to pick that piece of lego up from the floor.
It's all just words though, isn't it. It doesn't really matter what he calls me. In the rich tapestry of life he will forever be the thread that binds it all together. On days like today I'm reminded that he might not express his love in the conventional sense. But it's always there... in everything he does. Just below the surface. The force is strong with this one.
I am YOUR Father, son. And no prouder Daddy could there be.
Happy Janet's Day.
I said I created this blog and show because I wanted to discredit the idea that all those with autism are geniuses or have a special power of some kind.
But then sometimes I make a blog post and afterwards feel really guilty that I'm just replacing one stereotype with another. All the talk of Minecraft, Lego and challenging behaviours.
I've mentioned it before, but this is very much the story of The Boy. It's what autism is to us, through my eyes and hopefully his, since he's the only major experience I have. But The Boy is no more representative of every autistic person than I am of every man. He's as unique as you and I, and I don't want that to be forgotten. I have got so much comfort from other parents recognising many of his traits and behaviours, but equally I know there will be many others whose experience is so different to ours it's almost unrecognisable.
A parent who I had a quick drink with after one of the shows sent me an email, and part of it is here:
Our son is diagnosed as severely autistic and non-verbal. Each day my wife and I wake up with the hope that today will be the day that he answers one of our many questions, as to how he is feeling or would he like a glass of apple juice. Hope is I guess the little thing that keeps us all going...
Each time I post about something The Boy has said, or each time I complain about a queue in Legoland or him always playing the computer, I'm reminded that there are families for whom each of these things are a far-off dream. For whom autism is a silent, impenetrable world. This blog no more represents them than the film 'RainMan' represents my son.
So, although I'm delighted and touched that this blog and the show are raising awareness of autism and giving some insight into our world, I'd be doing a disservice to thousands of others if I didn't acknowledge now and then that it is just that. Our world.
Because every person has a story to be told. Even those who haven't found their voice yet.
Today The Boy is unwell.
It started in the night, a barbaric yelp in the dark at 2 in the morning. I rushed into his bedroom, standing on the obligatory piece of Lego en-route just to ensure I was in full sympathetic mode by the time I reached his bedside. He was all scrunched up in bed, pulling his knees into his chest.
"My waist", he howled. "My waist really hurts a little bit".
Now, I'm no medical expert, but I'm guessing if I phoned NHS Direct with the symptoms "it really hurts a little bit" they too might well be stumped. However, the screams into the night suggest the pain might be closer aligned to the 'really' part of the sentence than the 'little bit'. Never fear son, Dr Kildare is here. I shall investigate further.
I know from past experience I only have three questions to get to the root of the problem. Any more and the additional pressure of having to answer questions he doesn't know the answer to will cause a meltdown to accompany the deathly screams we are currently experiencing. I break it down into simple, easy to manage sentences. Once again this boy who can speak so well about subjects that mean so little can't find the words to express himself when it really matters.
"Show Daddy where it hurts"
"Everywhere!", he screams, clutching himself tighter.
"is it inside or outside?"
"Both!", his voice going up an octave to remind me I only have one more question left before we go to that place we don't want to go.
I offer the solution I always offer. The only thing I know.
"Let's try to go to the toilet".
And off we hobble to the bathroom, the change of scenery, the cold tiles under bare feet helping to calm him. The pain still comes in waves, but quieter now. He's going to live.
So we're off school today. He still has pains in his stomach. I think. And that's just it - I think. It's just guesswork. I'm still none the wiser as to what's wrong. Everything manifests itself as pain in the stomach for him. Anxiety, stress, depression, appendicitis - all have the same symptoms. And they just serve as a reminder that despite his fluency, the words just won't come when it really matters. This boy who can talk until the end of time itself about how to make a diamond pick-axe in Minecraft can't find the words to tell someone he's hurting.
And that makes me really sad a little bit.
I spent the other day at The Boy's school. They're building a sensory garden, and wanted some volunteers to help with digging. Given that they cope with The Boy and his outbursts each day, I felt I owed them something back. Although I have a feeling that twenty years of manual labour in a chain-gang will never repay that debt completely.
It was a brilliant day. The sun shone, and according to the scales I lost 1.5lbs. Victory. The best bit was meeting some of the other children at the school though. I've talked before about how daunting the idea of the future can be, and how difficult it is to predict what shape it will take. It's probably that unpredictability that makes it so scary. But on Thursday I was afforded a glimpse into how things might be. And it gave me real hope.
All the children came to join us at some point. Even The Boy managed to hold a rake for an impressive 74 seconds. But it was the older pupils, the teenagers, who stuck around the most. Some chatted, others didn't. But just being in their company was a privilege. Some were keen to help, others could see no point whatsoever in digging over a bit of land for someone else.
One pupil had the sharpest sense of humour, and a brilliant, natural comic timing that made me green with envy. Another remembered how there used to be a building on the land we were digging and whenever we came across a brick it was because the "knocker-downers" hadn't done a very good job. And another became mad at me for raking the soil in the wrong direction to what he was doing.
I learnt that one boy is teaching himself Mandarin and German as he likes the abruptness of the words; I learnt that I really should be able to name at least one World War II weapon, especially the basic assault rifle used by the American forces; and I learnt that being pointed at and being called 'a Man' over and over isn't rude, it's exactly what I am.
But the biggest lesson that day came in dealing with my own fear of the future. It's just that. MY fear. It's nothing to do with The Boy. Much like his peers, he'll find his own level eventually. He's going to be alright. He'll never be a gardener, that was very clear. But he will be alright.
So, for yesterday's INSET day, I decided to attempt to drag The Boy away from the computer screen. I took him to Legoland. I grant you, it wasn't the wisest decision I've ever made in my life. Partly because the other 8 million people who live in London seemed to also decide yesterday was the perfect opportunity to visit Legoland.
The Boy coped well with the two hour tailback getting into the car park, and then even the one hour queue at 'Guest Services' for the exit pass to help children on the rides who can't cope with queueing (oh, the irony...). We were finally in. The Land of Lego.
Legoland is great for playing the Spot the Person on the Autistic Spectrum game. The place is filled with them. I may well be playing to stereotypes again, but Lego seems to hold a fascination for so many children with autism. The brick that never changes, is as consistent from one day to the next. The brick you can build walls with to keep the confusing world outside away. I spent the day happily muttering to myself, "he's one" ... or, "she's on the spectrum, her mum and dad just don't know it yet"...
We only went on a couple of rides. There's a favourite one we both like - Fairy Tale Brook. It's a really slow, gentle ride in a small boat through different fairy tale scenes made out of Lego. And the ride is full of new mothers, babes-in-arms and small toddlers oohing and aaahing their way around. And then us two lumps join them and The Boy's voice cuts through the gentle music and air of serenity as he comments at the top of his voice on what has changed since we were last there three years ago and how it's not even a real boat we're sitting in.
Rides aren't really the reason to visit Legoland though. Rides just detract from the main event. The Lego. We spent two hours in one room where you can make cars out of Lego and race other people down a ramp. And The Boy liked it because all the children in the room were at least half his age and frankly they were amateurs. Wasting time building elaborate contraptions when The Boy realised that if you want to win a Lego car race all you need is an axle and two wheels. He kicked the arse of every toddler that dared to take him on. Top dog.
Then The Boy's highlight of the day - Star Wars Miniland. A whole exhibition where scenes from Star Wars were recreated in Lego. Utopia. We spent forever in here. It was dark, so The Boy clung to me with one arm as I pushed his wheelchair with the other, but the darkness also seemed to help him be himself. As we came to each exhibit he became excited and animated as he talked through each scene in front of us. Hand gestures to emphasise points. Sharing knowledge I never even knew he had. It was like a light went on inside him and he was able to express himself in ways he never can and even in the darkness his eyes shone with delight and wonder. And yes, it probably would have been easier to understand him if he'd taken a breath once in a while, but it was one of those all-too-rare moments where he truly seemed alive.
The Dad's highlight of the day? Apart from the drive around the M25, it was in the room where we raced the cars down the ramp. There was another lad who I'd spotted and identified quite clearly as being "one of us" some time earlier. And although he was at least half The Boy's age, the two of them seemed drawn to each other. Birds of a feather... They never spoke, but they raced side by side for quite a while. And as we went to leave, I told The Boy to put his two wheels and axle back. The winning car. Instead he walked over, and without saying a word he just put it on the floor next to the other boy's feet and the two of them looked at each other and smiled. A gift. For a friend.
This blog is about bringing up The Boy. He's 12 years old and autistic. It's written by The Dad. It's my words, my view. Other people will think differently and have different opinions. Good.