It's funny being a single dad. People automatically think you're some kind of wonderful human being. I don't get it. Single mothers? Well, they're just benefit scrounging layabouts. Single fathers? Oh, we're all heroes! It'll be me and Peter Andre fighting it out at the Pride of Britain Awards.
Well, I was reading through some of my past blog posts last night, and I think there's a key bit of information I've missed out so far. And here it is:
I'm a Shit Dad sometimes.
Maybe I've portrayed myself as the Dalai Lama of Autism (or, as my mate Greg very kindly pointed out, due to my portly manner it's probably more Buddha). Well I'm afraid the halo has slipped. Yes, I try my very best to be positive ... but I can be moody and impatient. I hate routine. I hate sameness. I love spontaneity and acting on impulse. The very things that can cause havoc with the autistic mind. And sometimes ... sometimes I just can't be arsed with it.
I'm not saying this because I want people to rush to the comments section and tell me what a wonderful job I'm doing... I'm only telling it because I want this blog to be an honest portrayal of our life together. And some of my posts are in danger of turning into 'The Darling Buds of May'. Yes, The Boy finally goes to a brilliant school with a brilliant teacher. But he still spends a huge chunk of his day refusing to go into the classroom, hitting, swearing, insulting and spitting. Home life is still spent walking on eggshells, trying to decide which behaviours to ignore and which to make a stance over. And it's this challenging behaviour that has by far the biggest impact on our lives.
I suppose it's the whole nature or nurture thing. How much of this behaviour is because of his autism, or because of his upbringing? Am I too soft with him? Too hard on him? Not consistent enough? Too rigid? Have me and his Mum spawned a monster by trying to do the middle-class thing and keep everything amicable and "all about The Boy"? And no matter how many times it is repeated to me that "he can't help it, it's part of his condition", like so many other parents who walk a similar walk, there's still a part of me that thinks "I've created this".
So there you go ... I'm not perfect. Turns out, we're all just the same.
Let's vote for Peter Andre.
I've spoken before about Mr Teacher, the new role model in The Boy's life. Well I got an email from him last night. As usual, it's been edited to protect the innocent, but it goes something like this:
"As we spoke about earlier, attached is a photograph and introduction from MsNewTeacher. MsNewTeacher will be taking The Boy's class on Monday morning for one hour and The Boy will be asked if he feels that MsNewTeacher would be a suitable teacher at our school in the future."
I love that! I love the photo to prepare The Boy for the stranger coming to school, and I love that The Boy has a say in whether or not he feels she'd be a suitable teacher. It reminds me why this is the right school for him, and it's lovely to know his opinion is valued and appreciated... And at the same time it has made me laugh and chuckle to myself all day. I know The Boy's opinion will only be a small part of the process, but oh how I would love that he was the main decision maker!
We talked about it over dinner. School would appear a little different to what it does now. Lesson One would be 'Lunch'. Lesson Two 'Play'. Lesson Three 'Play'. Lesson Four 'Play'. Lesson Five 'Computers'. Lesson Six 'Play'. Lesson Seven 'Hometime'. And Harry Potter would be the caretaker.
So, if you're going for a job interview at a school on Monday, don't be wasting your time with lesson plans and child protection legislation. Just brush up on your Doctor Who, Simon's Cat and Minecraft. If you really want to nail it, ignore the five outcomes of Every Child Matters, just recite the six names of the members of Power Rangers Samurai. The job's yours.
Oh, and I asked The Boy if he could have anyone in the world, from TV or anything, any superhero he wanted, who he would pick to be his new teacher. He didn't even think about it.
"Mr Teacher", he said.
How do you cope?
It's a question I've been asked a few times, and I find it a strange one really. I know no different. I have no other children to compare The Boy to. This is parenting to me. And life really isn't that difficult. I've said it before, there are plenty of people worse off than us. There's real comfort in relativity. And relatively, we're doing just fine.
I remember the last time I asked someone the same question: how do you cope? I was nineteen years of age. At the age of 11 I won a scholarship to go to a private boy's school. I spent the next seven years there, and hated every minute of it. I just didn't belong. I couldn't wait to leave.
And then less than one year later, I found myself returning. The Old Boy's Dinner. An event for ex-pupils. I went because I managed to cadge a free ticket. And if I'm honest, I went because I wanted to see if I finally fitted in. I didn't. And at the end of the night as everyone left it was just me and Brian, the caretaker. My friend.
I'd always got on well with Brian. He ripped the filter off Benson and Hedges cigarettes and he smelt of Old Spice. Brian got a rough ride at the school. His faded ink tattoos, Farah trousers and military haircut all pointed to a different education. A different upbringing. But he reminded me of my dad. And I felt more at home talking to him than I did to anyone else there. That night we broke into the bar that had been locked up and nicked a bottle of brandy. And we sat in the school hall and we chatted. And as I coughed and spluttered through each cigarette he forced down me, temporarily getting relief from the brandy just before it began to burn the back of my throat, I felt like a proper man for the first time.
And that's when I asked him the question. "How do you cope?", I said, "when all these kids are looking down their noses at you. Don't you get pissed off with it all? How do you cope?".
And this is what Brian told me.
"See this hall", he said, as we both looked round. It was a beautiful building. Ornate. Grand. I nodded. "Well, on a Sunday, when the school is completely empty, and no-one else is around, I come in here. I take my music tape and I put it on backstage. I turn it up as loud as it will go. Then I step down from the stage and into the middle of the hall. And then I ... I conduct an orchestra."
And writing down those words now sends the same shivers down my spine as they did when I heard them for the first time twenty two years ago.
So whenever anyone asks me the question, "how do you cope?", the answer's easy.
In my mind, I conduct an orchestra.
The morning routine before school is a skilled affair. Every day it feels like playing with an old World War II bomb you found under the duvet in The Boy's room where you left him the night before. It needs to be treated gently, carefully. It could go off at any point. And the worry is once it goes off it continues to remain active for the rest of the day.
So, the routine is followed. We've learnt the best way to do things over the years. Get dressed. Breakfast. Television. Bathroom. Shoes. Get Out of Here. But by far the most precarious stage, the one where it could all go wrong, is Bathroom.
The clock strikes 8.15am. It can only mean one thing.
Or, to give it its full title:
Hey, I'll Tell You What Mate, We've Had Quite a Pleasant, Chilled Morning Getting Ready, How About We Head Into the Bathroom for a Fight?
It's got easier over the years I'll give you that. Different strategies have worked, some better than others. Musical toothbrushes, Toy Story toothbrushes, electric toothbrushes, flashing toothbrushes, soft toothbrushes they've all played their part. Strawberry toothpaste, banana toothpaste, bubblegum toothpaste you've served us well. Mint toothpaste, you will continue to be the root of all evil. Bicarbonate of soda toothpaste, you're beyond words.
Once teeth brushing is completed (I say brushing, it's more just holding a toothbrush in your mouth for two minutes - it might as well be a thermometer) then we can move on to washing. For this you must use ice cold water. Never use the hot tap to lightly warm the water - anything above freezing cold BURNS during the washing process. Put your hands in the freezing water. Hold them there for longer than would appear humanly possible. On no account should you rub the hands together. Next touch a bar of soap with the very tip of your fingers. That's the soap bit done. Now throw water all down your school uniform. Be careful to avoid your face at all times. Perfect. Face and hand washing done.
Some mornings I get cocky. Things have gone well. We're doing good. I get carried away, I reach under the sink ... I know it's here somewhere ... There it is. The hairbrush.
This evening The Boy cooked dinner. His first time ever. This is the recipe:
The Boy's Beans on Toast
You will need:
Throw the beans into the pan in a half-arsed manner:
Put the bread into the toaster:
Put the pan of beans onto the stove and stir them while constantly repeating how boring this whole thing is:
Yum! Not long now... Remove the toast from the toaster, remembering that it is hot and throwing it on the floor:
Pick it up with no qualms whatsoever. Lightly butter the toast:
Gently cascade the beans on to the warm toast:
Voila! The best plate of Beans on Toast ever. Fact.
Autism isn't a gift.
Let's trample on that myth. If it is a gift, it's the equivalent of someone spending £0.0003p on a £5.00 Secret Santa present and then rolling it in crap, wrapping it in broken glass and asking George Osbourne to hand it over.
Now I grant you, there are upsides. The Boy has a quirkiness to him that everyone loves, myself included. But what's to say that quirkiness wouldn't have been there anyway? The trouble is there's no marked line between where The Boy ends and his autism begins. The two of them are so intrinsically one I couldn't possibly separate them.
The biggest problem is that 'Autism - The Gift' comes with a free supplement with Issue One. And that supplement is 'Anxiety'. And it's often the anxiety that's the hideous part. The relentless hand flapping, repetitive behaviours, thirst for routine and sameness - they are all to try and create order and sense in a world that makes no sense. And it's the anxiety I hate to see in The Boy. Eating away at him inside. It's so often etched on his face, seeping out of every part of him. The bitten fingernails, the little tics, an external nod to the internal pain. All any of us want is for our children to be happy. That's it. And for the most part I hope and pray that The Boy is. But for every smile, every laugh - and there are plenty - I know under the surface there is an anxiety that rages and burns deep inside of him, twisting and turning, festering and growing, and it never, ever, ever goes out.
So the next person who tells me that autism is a gift can stick it where the sun doesn't shine. Autism has taught me a lot about myself. It's taught me patience. It's taught me calmness. It's taught me how to separate two bits of Lego with my teeth. But this isn't about me. It's about The Boy. And until he glows each and every second of every minute of every day with a happiness that envelops him like the Ready Brek kid, it can never be a gift.
So, don't bother telling me about the next issue of 'Autism - The Gift'. Unless it comes with a free pull-out supplement called 'Acceptance'.
Once upon a time The Boy went to school with TheBoyWhoCouldn'tSitStill. TheBoyWhoCouldn'tSitStill didn't really like school. He hated it. Too many rules. Too much pressure to conform. His brain worked at such a rate he seemed unable to process anything. His fists and his mouth would react to situations before his brain even had time to engage.
TheBoyWhoCouldn'tSitStill was half the size of the other children, I nicknamed him Dash from The Incredibles. And he was nothing short of incredible. I have never seen a child move so quickly, darting out of the classroom and on to the roof before you knew it. He liked the roof. A lot. I'm not sure if it was the sense of danger, or the fact that the teachers would never dare follow him up there. All I know is whenever I used to go and collect The Boy, TheBoyWhoCouldn'tSitStill always appeared most content when he was out of reach of the world.
One day I went into school, and nine fire doors had been kicked in. Nine. Those thick glass panes with the wire inside. It was TheBoyWhoCouldn'tSitStill. Four foot something of destruction had unleashed his anger with mankind. And it was probably because he didn't want to wash his hands before lunch or queue up after break.
TheBoyWhoCouldn'tSitStill's mum would come to collect him. We crossed paths regularly - I'd have been phoned to collect my son for biting, and as I pulled up into the car park she'd be calling hers down from the roof. She was exhausted. He didn't sleep at night, only for a couple of hours. She had nothing but my full admiration.
You see, TheBoyWhoCouldn'tSitStill was diagnosed with ADHD. You know the one, that supposedly non-existent condition caused by crap parents that people snigger about. Well, here's my own version of Disability Top Trumps. I worked in a respite care home for children with disabilities for a couple of years. I worked there originally to help put The Boy and his problems into perspective. And then I stayed because I loved it. And the most challenging children, the ones who struggled to fit in the most, were often those with ADHD. Yet still people mock it as a condition or say it's just spoilt children with appalling parents.
So, all I'm saying is in some ways me and The Boy are lucky. Autism seems to be flavour of the month. It's almost trendy to have an autistic child. The new bipolar. If you go on facebook or twitter every day is Autism Day for some reason or another. And don't get me wrong, I'm eternally grateful for that. But let's spare a thought for those who have conditions that aren't as well recognised. I was used to being labelled a Shit Parent before The Boy was diagnosed. His diagnosis helped deal with that a lot. I can't imagine what it must be like when even after diagnosis the label sticks even more.
I'll get down off my soapbox now. I've just declared today ADHD Wednesday. Join
TheBoyWhoCouldntSitStill and shout it from the rooftops.
We're alright with dressing now. We've got that one sorted fairly well. The Boy can largely dress himself. As long as the clothes are laid out for him in the correct order. Pants > Socks > Top > Trousers. And there's no zips. Or buttons. Or anything inside out. Or itchy. Or with a label to dig in.
The sock part is the bit he needs help with. There's something weird about socks. They have an underneath part, but when you hold them up to look at them to work out the right way to put them on there is no underneath. And no matter how much you pull at them they just don't go on. We've been for lessons. Oh yes, these things exist. Sock lessons. We went for Occupational Therapy at the age of nine to teach us how to use a knife and fork and put on a pair of socks. And it kind of worked - The Boy learnt how to do both. But one thing the therapists failed to grasp, and the one thing you can't teach, is "Why?"
It's one of my favourite things about The Boy. And those of his ilk. He doesn't conform as easily as the rest of us. Doesn't fall into line. He's no sheep, that's for certain. I remember watching his face while he was being taught to put on a sock. It took six lessons. An hour each. And the whole time he had a look on his face. Why? Why are you teaching me how to put bits of material on my feet? They're perfectly fine without it. Why do I have to cut up a sausage with a piece of metal when I can just pick it up and eat it? Why does the piece of cloth you've made me wear have to be tucked in to the other piece of cloth I'm also forced to wear?
And I love that for the most part I can't answer him. I love that he makes me question so many things that for years I just went along with. So often I wonder and worry what The Boy's legacy will be. But whatever it is, he will always be someone who was able to look at the world differently. To be an individual. Unique. And he will forever be the person who has taught me more about what it truly means to be alive than anyone else on this planet.
That's his legacy.
Right, we're off to eat dinner. In barefeet, with our hands.
Sometimes I try and decide what to write here in advance. I'll look at some of the previous blogs and decide whether it should be funnier, or more cerebral. Then real life comes along and makes the decisions for me...
We decided to stay on an extra day at The Grandmothers. We'd had such a great time, and The Boy loves it there. The Grandad is a huge part of the attraction too. My own Dad died far too many years ago, and Step-Grandad has been around since The Boy was born. But there's something horrible about the 'Step' word, a callback to childhood fairy tales of the Wicked Step-Mother. So he's very much Grandad. And no finer Grandad could The Boy have.
The Grandmother and Grandad have dogs. The Boy loves dogs, like so many other autistic children. I never did get him the dog I mentioned earlier in the blog. We live in a flat with no garden, it just didn't seem fair. But Milly and Monty filled the gap. Milly, the older mother, and Monty, the playful youngster. The Boy and Monty share something very special. Milly humours The Boy, putting up with his endless attention, but Monty adores him, and they spend their time playing in puddles and rolling round together.
Milly had been unwell for some time. Old age taking its toll. Yesterday morning just before we left Grandad took her to the vets. And yes, you can probably guess where this is going...
Only Grandad came back.
And as his Grandparents stood in tears in the kitchen I went to tell The Boy. The unbearable weight of having to pass on hurt when all your natural instincts scream at you to protect them and wrap them up from pain forever and ever.
The Boy didn't react. No tears. Tears fall when you lose at Snakes and Ladders or when you can't find The Power Rangers Series 7 DVD. But not for heartache. Heartache eats away at you from the inside. Bubbles. Festers. But on the surface, nothing. And all I wanted to do was reach inside him and rip the pain out of him.
After what seemed an eternity of us just standing together - touching would only have made it worse - The Boy broke the silence.
"Does Monty know?"
And so we went out into the garden where Monty was playing. And The Boy sat down with him on the bench. He put his arms around him. Monty was excited to see him, licking his face.
"Milly's dead". The Boy said matter of factly. Then he flung his arms around him and the two of them just sat. And I know it's soft, soppy, over-sentimental shite, but Monty seemed to understand.
So the car journey back down South was a subdued affair. Dad sat swearing under his breath at the traffic on the M1 and M25. And The Boy dealt with his pain the way he deals with anything that upsets or worries him. He picked his nose continuously until it bled, the blood pouring out from his nostrils where there should have been tears from his eyes. But it helped him. A release. Physical pain, the pain you can see, so much easier to handle than the emotional pain inside.
He's much better today. Your boys will be just fine, Milly. And the next blog will have jokes, promise...
Yesterday we said goodbye to The Cousin and then went to meet the Other Cousins. They're roughly the same age too. They live in a small village where everyone knows everyone.
They'd arranged to meet all their friends at the local park for the afternoon. They go on their own normally, on bikes or on scooters. They wanted The Boy to go with them. And he wanted to go too.
Playgrounds have always been horrible places to visit. Turn your back for a second and someone has been bitten or hit for being so bold as to want to use the slide when The Boy has decided that at the very top is the perfect place to just sit and reflect on the world for twenty five minutes. The Boy can't climb or jump, both of which come in handy in a playground. Add to that the other children that he wants to be friends with but can't work out how to, and they tend to be places of real frustration that bring out the worst in him.
So, of course we decided to go.
I drove them the fifty metres round the corner. And when we arrived we were greeted by the five other boys we were meeting there. The Gang. They were all in Year 6, all standing in their hoodies and skinny jeans. And to me they looked like they were all about 23 years old.
Fashion is something that has largely escaped The Boy. And me. Clothes are selected for comfort only. Not that he really 'selects' clothes, he just wants to wear the same ones. Clothing is a necessary evil, only made almost bearable by character t-shirts and Lego Star Wars underpants.
And suddenly there he was stood in the middle of all these boys with their Justin Bieber haircuts and neckerchief things. I could still make him out by his luminous socks that he always wears, poking out between the too small jogging bottoms and his black school shoes that he insisted on wearing because it isn't Saturday or Sunday. And I realised he was taller than most of them. My boy's growing up...
So, I left them to it. I sat in the car and watched from a distance, one hand on the door handle poised. My nod towards independence. And The Boy played with them for over an hour. They seemed to laugh at his jokes that make no sense. They played tag, and one of the other boys would help out when The Boy was 'It' and do the running and climbing for him. They pushed him on the swing, far higher than he'd ever let me push him, and he squealed laughing. No-one was bitten. No-one was hit. I'm sure he called someone a dickhead at least once, but the car windows were up, I couldn't hear, and let's not spoil the romantic image... Somewhere, in a village in the middle of nowhere, for an all too brief moment in time, my son belonged.
We're going clothes shopping today. Both of us. We're down with the kids.
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.