New School is a forty-five minute drive, so we have to entertain ourselves. What that really means is, I have to entertain The Boy.
There's a section of the show where I improvise with the audience. I see these car journeys as training ground for that. A chance to try out new material. And it's quite similar to the experience of doing the show - sometimes it goes well and every line gets a laugh. Other times it feels like trying to talk with the world's chewiest toffee stuck in your mouth but you muddle through.
This morning, it's safe to say, I died on my arse.
The Boy decided from the outset I wasn't funny. And nothing I could do would change his mind. I thought I'll forget the new stuff, and just do my tried and tested material. I tried the whole back catalogue. All the stuff that always gets a laugh. Beeping the horn and waving to random strangers to see if they'd wave back. Nothing. Pretending to hit cyclists on the bum as they went past. Nada. Giving funny voices to people walking by suggesting their hands were glued into their pockets. Zilch.
I should have left it. But like the comedian desperate for the laugh, I pushed and pushed. In the end I just wanted a reaction. Any reaction. Anything is better than silence.
I told him that lemons scream when you cut them.
I don't know where it came from, it just came out of my mouth. I saw the hint of a reaction, so I carried on. I even created a back story... "That's why Dad says 'stop screaming like a lemon' sometimes". I thought I'm on a roll, I'll get a laugh out of him yet. "See those strawberries I put in your lunchbox. They squeal when you cut them. You have to listen really closely, but they do squeal." His mouth opened slightly. I was in my stride now. "See those grapes for your morning snack. They make little whimpering noises when you bite into them...."
I noticed the crimson tide rising up from his neck first. Then the anger filled his face. Pure, unadulterated hatred. I said a reaction would do...
"STOP TELLING LIES!!!!!!!!!!!!!!!" he screamed. Like a lemon.
I'm sorry Mr Teacher for what I left you with this morning. Tough crowd.
Yesterday I took The Boy to Tesco. On a Saturday. AMATEUR. In my defence, I had become heavily reliant on the fridge to get me through the joy that was half-term, supplies were low.
I could write pages and pages on the delights of supermarket shopping with an autistic child, but I'll just say this... Supermarkets are designed purposefully to bombard the senses to make us buy more - smells, colours, lights, sounds, the lot. For many sufferers of autism, this attack on an already overloaded system is too much. So, the next time you tut at the screaming toddler in the middle of the vegetable aisle, or wonder what the strange teenager flapping his hands and making repetitive noises is doing by the freezers, try to show some compassion. Supermarkets are horrific places for all mankind. Some of us have different coping methods, that's all.
Public service announcement over, back to the story...
We made it to the end of the shop. The 9 pre-agreed items from earlier in the day had been selected and ticked off the list (no more, no less. Even BOGOFs cannot be used if it takes you over the pre-agreed quota). Then disaster. The Boy LOVES the self-service checkouts. Hated the world over, but loved by him. The lack of contact with a single human being makes them perfect. Going to the human being tills causes problems. Strange human beings, some talk to you, some don't. Some smile, some don't. Some give you a bag, some don't. The self-service checkout does the same thing every time. And even if there is an unidentified item in the bagging area, it doesn't raise its voice or get angrier, it just repeats itself, over and over, in the same consistent voice. The boy will scan away to his heart's content, reassured that he's just one step away from a "please insert your card into the chip and pin device..." or "please scan your Clubcard"...
Except yesterday, all the self-service checkouts were out of order. Kaput. Less than twenty foot away was a human being till, we could just go there instead, it wouldn't be that much of a problem would it, come on mate, it's only a little queue, you don't have to stand too close to them, Dad really wants this four pack of Peroni that he's waited all week for...
We had Dominos for tea. I'll go tomorrow when he's back at school.
Today a friend came round to play. A new friend. From the new school. TheBoyWhoDoesn'tStopTalking is a couple of years older. He's brilliant. He calls everybody 'Sir'. I told him he could call me John. He said that felt strange, so I said he could call me 'The Boy's Dad'. He said he'd do that. Sir.
TheBoyWhoDoesn'tStopTalking is now my favourite person. I have never known a twelve year old boy walk into a room before and comment on “what a beautiful sofa you have”. When I asked him if he would like a drink it took twelve minutes to reply that he wasn't really feeling thirsty, but he did like the flavours of certain drinks, and so he would like a drink only for the taste rather than to quench his thirst and that he was allowed fizzy drinks, as he knows some children aren't, but he is - apart from Fanta, not that there is anything in Fanta that means he isn't allowed it, it's just that Fanta is his favourite, favourite drink and he really, really likes it and the thought of drinking it makes him so excited that he can't control himself. This was followed with numerous anecdotes about occasions in his life when he'd had a drink.
The major difference between The Boy and TheBoyWhoDoesn'tStopTalking, is that the latter knows he's autistic. He refers to it a lot. The Boy has no concept that he is, at least as far as I know. So I tried to steer the conversation on to that subject, as I think The Boy might understand better from his peers rather than from me. TheBoyWhoDoesn'tStopTalking spoke at length about how his autism makes him talk a lot, makes it hard for him to make friends because he knows he talks too much but he can't stop and about how it makes him get angry inside sometimes because he can't find the right words even though his head is full of words and that sometimes he talks a lot because he's just looking for the right word to say. At one point he paused for a breath, and I managed to get a question in... “What does it feel like being autistic?”
“It just feels like... like Me, sir”.
And surely there's no better thing any of us can be.
The Boy's command of the more salubrious words of the English Language is fairly well known. It's not something I'm particularly proud of, but it is something I've come to terms with. And then this week, I read a post by a friend on Facebook. And I realised the really offensive f-word in so many homes of children with special needs isn't what people might think it is. The dirtiest f-word of them all, the one that can never be said, is 'Future'.
The future is a frightening place in so many ways. Every parent bears the responsibility of their children for the rest of their lives. But this week it occurred to me, The Boy isn't just my responsibility for the duration of MY lifetime. He's my responsibility for the duration of HIS lifetime.
Don't get me wrong, this isn't a moan - in so many ways I'm blessed. In brighter moments I imagine The Boy will be able to live an independent life in the future, albeit with some support. I don't know how his mobility will affect him, only time will tell, but he'll get by. It's picturing him in this world without me, or even his mum around, that scares the shit out of me. And maybe I do him a disservice in all this, and he'll get along just fine, I don't know. But do any of us?
I've written this post six times so far this week and then deleted it. It's not quite in keeping with the tone of the rest of the blog. But whenever I sit down to write this is all that is filling my head. So, that's it. I've put it out there, and now we can move on.
Oh, The Boy got four certificates on Friday. I've had to upgrade the display from the fridge door to the larger exhibition space of the kitchen door. One of them was for building a snowman and another was for 'an amazing bit of skill in the ball pool'.
He's going to be just fine...
Oh, Toenail Cutting Day, how I have missed you.
Like all great events, the key is in the preparation. Twenty four hours is the optimal period to prepare The Boy for Toenail Cutting Day. Any longer causes anxiety. Any shorter and I might as well be performing open heart surgery on him with a blunt teaspoon and no anaesthetic.
So, to prepare:
1. Empty the bathroom of any item that isn't secured down.
2. Find the largest bath towel. Place it at the foot of the bath ready.
3. Put the nail scissors discreetly behind the toilet cistern ready. It is of the utmost importance that these aren't spotted in advance.
4. Lower the toilet seat lid. This will be the operating table.
Now we're ready. Stage 2.
Run the bath. Don't add any cold water, just boiling, almost scalding, hot. After calling 'bath's ready', prepare for a 90 minute battle to get The Boy into the bath. By which time, the water will be at its ambient temperature. Now The Boy is in the bath that he didn't want to get into, he will refuse to get out. Don't try and be clever and take the plug out. He will sit in a cold empty bath quite happily. Instead, frighten him. Tell him that these horrible little creatures called bacteria live in the bath and they eat children's skin, starting at the fingertips and that's why they go all wrinkly.
Yes, I am a mean, horrible man but means must.
As he leaps out of the bath wrap him in the large bath towel that you had in place earlier. Keep the arms tucked inside, that's key - imagine a roll of carpet with a head sticking out of one end and feet at the other. Holding him, you can lower him on to the toilet seat in the same movement - there should be just enough 'give' in the towel for you to bend him into the sitting position. Now take out the nail scissors. Speed is of the essence.
If you thought it was weird up until now, wait for this bit.
Each of the toenails has been assigned a name. The left foot is always girls, the right foot boys. The left big toe is always Fiona. On the right, it's Fred. The other names are allowed to change. And so the nails are cut with phrases such as "Oh Florence, haven't you grown since I last saw you", and "come on Ted, be a good boy and get your haircut..."
Thank God he bites his fingernails.
So, the official week one at the New School came to an end. It was an up and down week - a few triumphs scattered with lots of time in the chill-out room to calm down. Only one phone call home on Wednesday, a result.
Then came Friday.
My phone rang at about 1pm yesterday. I'm used to the phone ringing when The Boy is at school. It's something that has happened consistently since he went to his first Reception class all those years ago. It was Mr Teacher.
"I phone you when things are going wrong, so I thought I'd phone you when things are going right. He's having a brilliant day. No hitting, no biting, he's stayed in class all day, I'm really proud of him."
Now I should have been delighted. I should have shouted from the rooftops. But after years of being told he's always doing the wrong thing, all I could think was "bit premature there Teech... still another two and a half hours. Plenty of time..."
At the end of school The Boy came out of the gate. And there on his jumper was a sticker. 'Gold Award'. And the romantic in me likes to think he was walking a little bit taller too. He gets into the car and I read his home-school diary. At assembly this week he won the Gold Award for "Making good choices and controlling his actions". I asked him if it made him feel happy. He started stammering, looking for the words that never seem to come when we talk about emotions of any kind. After an age, he blurted out "it made me feel like I was crying inside". And we both just sat, silent, not sure who was more amazed that these words had tumbled out of him.
I won't keep going on about New School any more after this post... All this gushing seems far too out of character. Today is Toenail Cutting Day, that should bring things back down to earth. But Mr Teacher has taught Dad a valuable lesson too this week. He's taught him to believe in his son a bit more. And last night when The Boy went to bed I added his Gold Award to the two certificates on the fridge door.
And Dad cried a little bit too. On the inside, of course.
So, new school is about to enter day 3. For the two week assessment The Boy was sweetness and light. Then on Monday, his official first day, he calculated the time had come for attack. The element of surprise. Now was the time to bring out the big guns. This enemy had underestimated him. It was time for Shock and Awe.
By all accounts, it was an impressive display. He pulled out everything in his arsenal. Kicking, punching, swearing, biting, spitting - he bombarded them with the lot. Wave after wave, barrage after barrage. Oh yes, he'd show them who was the superpower to be reckoned with.
By the time I arrived to collect him at 3.30pm the battle was over. I was called into the office for a full de-briefing before heading to assess the battleground. And collect the wounded. As I opened the classroom door I was unsure what to expect. Tired and helpless, The Boy was flopped over a chair. The school uniform that had looked so new and fresh just hours earlier now hung from him like the battle fatigues of a veteran. He'd given everything. There was no more fight in him.
And standing next to him, the enemy. Mr Teacher.
"We made some wrong choices today, Dad", Mr Teacher said, beaming away. "But we've spoken about it and we're ready for a much better day tomorrow. I remember when I started at this school. And I was scared on my first day too..."
And his smile told me that we were in the right place. That far from being the enemy, The Boy had met an ally. Someone who understood. Things might just be okay.
As we trundled out of the classroom with the remains of a smashed Dr Who lunchbox in one hand and a bandaged Home-School diary in the other The Boy turned to me. "I really like my new school, Daddy".
So do I, son. So do I.
So, dear reader, for those who aren't up to speed, The Boy hasn't been in school since September, since his last special school said they couldn't meet his needs. In fact, he hasn't been full-time in school for over two years.
Last week he finally started an assessment at a new school. At the end of the week they were uncertain if they could offer a place, and wanted longer to assess him. Today they made their decision. And it's a Yes. Today is the best day in a long, long time.
After a few tense email exchanges with the Local Authority as the 5.30pm deadline loomed nearer, the funding is agreed and in place. The Boy starts full-time on Monday. It feels like one of the worst periods of our lives has come to an end. I have spent weeks, months, even years writing letters, making phone calls, sending reports, attending meetings to try and get him the help and support he needs. And finally, it might just be all over.
The new school is amazing. It has 18 pupils and 3 ponies. Oh, and a Wii, which is what swung it for The Boy. And it has staff who seem to really want to make a difference. And I know all this seems gushing, but The Boy is now 10, and I can't remember the last time anyone in a school setting said anything positive about him. In Assembly this morning he won two certificates for his behaviour and work this week. And those two photocopied certificates have taken their rightful place on the fridge door. And every time I go to make a cup of coffee I smile at them. They make things seem normal.
So, I can officially declare Dad's School closed. I hope it will never re-open its doors again. Between you and me, it was a shit school anyway. They didn't even give out certificates.
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.