Within a fortnight, I’d been asked to go in to school at lunchtimes to support The Boy (the choice was either that or bring him home for lunch). So many parents have since told me I should have refused, that I should have let the school deal with things on their own. That way the school would have to bring in additional help if they felt it was necessary. Looking back, I know those parents were absolutely right but at the time I was desperate to try to ensure another placement didn’t break down before it had even properly started.
I don’t regret going in to the school at lunchtime though. Maybe it was just what I needed to appreciate how hard things were for him – it gave me so much insight, watching him trying to interact with others in a huge playground. I’ve often thought it’s a luxury most parents don’t get, to see the child in their own environment, away from the security of home and to see just how they engage with the world.
Lunchtimes and playtimes were the worst time for him, with the lack of a routine and free-play stretching ahead. I was able to see just how much of a struggle school was and how hard he found it to communicate with other children, much preferring actions and gestures to make himself be heard.
I’d never noticed before just how much children communicate without words all the time. As adults, we’re rubbish at it. We might have a couple of hand gestures up our sleeve for when a car pulls out in front of us, but apart from that and the universal mime of signing-the-chequebook-in-mid-air-when-asking-for-the-bill, we don’t have much else in the repertoire.
Children have ‘tag’ (or ‘tig’, depending on where you are in the world). For so long it was The Boy’s gateway to reaching other people. And the best bit of it all was that no words were required. He’d walk up to a child in a playground, tag them and run off. Some wouldn’t get it, but that was OK. It was bit like speed-dating for children – they just move on and tag the next person. Eventually someone will get it and, once that other child turns to run after you to tag you back, that’s it. You’ve cracked the code. Friends.
These friendships were often short-lived. Once the other child had tagged The Boy, the game was over. There would be no reciprocal chase. The Boy would head off to find someone else to do it all over again with. He was only ever interested in being hunted. Maybe he felt important that way. Maybe even at that young age he’d already spent so long trying to fit in that someone chasing him made him feel wanted, made him feel like he belonged. Or maybe his dad should stop trying to romanticize a story about two kids legging it around a playground.
Apart from just watching The Boy though, I started to get a sense for schools and how they worked. Maybe that’s another reason every parent should spend a day in a school. Not only to see how their own perfect little sunbeam really behaves, but also to get a sense of just how difficult a task teaching can be. When you start to think about it, school is such a strange concept. It’s the only time in our lives when we are forced to sit in one room with thirty other people for years on end, being forced to get along when the only thing we have in common is that we were all born in the same twelve-month period.
There were so many rules and regulations that The Boy just found utterly confusing. He hated standing in line. I understand it can be difficult to get thirty-two five-year-olds to walk in an orderly fashion to assembly, but the standing-in-line business was a real eye-opener to me. Children were made to line up to go to the toilet, the playground, to breathe. I kind of understand why – when you have so many children in your care, if you don’t instil certain rules then there is the danger that anarchy will ensue. But I have also noticed over the years that there’s a direct correlation between how much the school wants children to stand in lines and how crap it is. The worst schools – and, let’s face it, 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.
Oh, how arty-farty and liberal of me. Really, I’m bound to say that, given I have the child who refuses to line up. Looking back now at those lunchtimes, maybe it wasn’t the free time and lack of routine that caused The Boy so many problems. Maybe it was the lining up. Line up to leave the classroom, line up to go and wash your hands, line up to enter the hall, line up to collect your lunch, line up to put your tray away, line up to leave the hall, line up to enter the playground, it just went on. It took the school over twelve months to finally realize that if they took him out of line then the scratching, hitting and biting stopped.
At first, the SENCO (Special Educational Needs Coordinator) told me that 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 at the front of the line. All he wanted to do was avoid the middle. The middle of the line was awful, with 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. He didn’t have the words 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 protect himself kicked in. And he learnt that if he kept hitting out then people wouldn’t make him stand in 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.
One day Miss A suggested to The Boy that he stand at the back of the line. That was the 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.
And I remember all this because I often wonder, if someone had reached him sooner, helped to identify his problems at a younger age, how much easier would The Boy have found things? I’m quite ashamed to admit it now, but I also remember in those early days secretly wanting a child who would just follow the others, who would stand in line, who’d conform and do things without the outbursts, quirky behaviours and strange noises.
Nowadays though, I’m incredibly proud that 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 – the school bell will wait for one more day.
CHAPTER FOURTEEN
Play Away
The other day I took The Boy to the snappily named Children and Young People Development Centre. It’s a one-stop shop where you go to address all your concerns about your child’s wellbeing – health, social care and education – under one award-winningly designed, eco-friendly roof with garish coloured windows.
Chances are you’ll know someone in there, having met them at an occupational therapy class or at some support group or another. On the whole, I like meeting other parents. It’s good to listen and share with those who know and understand. But here was the shocker to me: some of them are arseholes.
There are arseholes the world over, I get that, but for some reason I thought this sacred group were exempt. But, no, it turns out that proportionately it’s the same as everywhere else – a percentage of parents of children with special needs are arseholes.
When I sat down the other day in the reception area (we’re so focused on the children with our coloured windows), I spotted a woman and her son from a physiotherapy class. ‘Fancy seeing you here,’ I said joking. I’m ever so witty like that. Then it started.
‘We’re never out of here. We might as well move in. This is the third time this month. They’ve never seen anyone like him,’ she blurted out. And as her rant gathered momentum I realized that it was too late. I found myself unwittingly playing yet another game of Disability Top Trumps.
To explain, Disability Top Trumps is a game played by some parents who will try to outdo the ‘d
isabledness’ of your child with their own and turn it into a kind of a competition:
‘Oh, your Jessica sleeps for three hours a night? Well, I’m lucky if James here manages an hour…’
‘…it takes you fifty-five minutes to get ready for school each morning? That’s nothing, we have to start getting ready the day before…’
‘…I’ll see your feeding tube and raise you epilepsy and challenging behaviour…’
Disability Top Trumps. I’m not sure why people do it. Or maybe I am. I recognize that some are purely venting their frustrations. But sometimes it seems to be more than that. We all want our children to be the very best at things; we all want them to thrive and succeed. And when realization hits that your child won’t be the captain of the first XI or soloist in the school orchestra, some people have to find something that their child can be top of, even if that means claiming the best-at-being-disabled crown.
I know this all sounds a bit harsh. And it probably says more about me and my inadequacies than about others. Who am I to moan about my problems when other people have far worse to deal with? There’s plenty who have been dealt a worse hand than me.
All I know is, I hate playing Disability Top Trumps. So if you’re one of those who do it, please stop. I’ve had parents come up to me after the show and state that they feel like a fraud because their child ‘is only a bit autistic’ or apologizing because their children ‘aren’t that bad’. This whole thing isn’t a competition. Just for once, can’t everyone be a winner?
MY SON’S NOT RAINMAN BLOG
Monday morning, 9.45 a.m. Play therapy. Children and Young People Development Centre. I think this was the first time we ever stepped foot in the building. Strange to imagine a world without it and what it contains – paediatricians, therapists, psychiatrists, psychologists, health visitors, social workers, nurses, special educational needs teams, they’re all here. The idea being that all the departments work together closely, sharing clinics and information.
That first time we walked in there, The Boy aged five, I had no idea how much time we’d end up spending in the building over the years, how many of its meeting and consulting rooms we’d sit in, how many different floors I’d visit or how many letters marked ‘Urgent – by hand’ I’d pass over the front desk. Even now, it continues to feature in our lives on at least a weekly basis. I might bemoan the system at times, but maybe it’s a reminder that in some ways we’re fortunate – the help is there. Often it’s finding it that can be the difficult part.
It’s funny, really, the lottery of life, how for some families it will only ever be another anonymous building they drive past on the way to school each morning, not even sure what its purpose is; for others it is central to the landscape of their lives. Good news, bad news, most of it emanated from here.
But on that Monday morning, our first visit, I wasn’t sure what to expect – my own experiences of therapy up until that point had made me sceptical, to say the least. Since coming out of hospital I’d seen a number of practitioners, each keen to take advantage of my employer’s generous health insurance. There had been Samantha, an incredibly posh lady with an office on Baker Street in central London who possessed what seemed to be an unhealthy obsession with my relationship with my mum; there was Martin who said he saw a lot of people from up north because they all grew up in terraced houses and the close proximity to each other was incredibly stressful; and then there was Graeme, a man whose entire wardrobe was made up of different shades of brown, who would sit cross-legged on his chair and say absolutely nothing every session until I spoke. Instead of speaking, Graeme used to make little guttural sounds at the back of his throat every minute or so. I’m not by nature a violent man, but I can’t tell you how close I came to hitting Graeme.
Well, it turned out the play therapist was a Frances, a cheerful Irish woman who I warmed to instantly. Sometimes I meet people and start to ponder why they do the job they do. But when I meet someone like Frances, I can tell right away it’s because they love it. She met us at reception and walked us upstairs to the meeting room. Upon entering we saw that across the back wall were a range of toys all laid out. The Boy made a beeline for them straight away, with me and his mum pulling him back, ready with the ‘Don’t touch’ that was always on the tip of our tongue. ‘Don’t touch’ accompanied us on every aisle in the supermarket, echoed round the walls of friends’ houses and bounced off every surface of a waiting room. ‘Don’t touch,’ invariably followed by the action of trying to prise open a small fist clenched around whatever item was foolish enough to leave itself within his reach. We’d become quite good at it over the years – The Boy’s mum had much better reflexes than me, but every now and then I’d manage to get hold of that porcelain goldfish before it made it into his mouth.
‘He’s fine,’ Frances said, ‘let him be. It gives me an opportunity to get some background from you.’
‘I’m going to talk with Mummy and Daddy for a little bit,’ she explained, ‘you can play with any of the toys you want to.’
The Boy lurched forward to the toys; being given carte blanche to get stuck in was a novelty. He proceeded to pick up a crocodile puppet. Instinctively he placed his hand inside it and then, moving his hand up and down to open and close its mouth, he used it to bash and bite every other toy while making growling noises. Frances made no comment, instead observing him continuously as she asked me and Mum the same old questions everyone asked on a first appointment.
‘Any complications during the pregnancy?’
‘What about the birth?’
‘And when did you first start having concerns?’
‘When did he first talk?’
‘Walk?’
‘Any family history of mental illness?’
The Boy had been playing on his own for a few minutes and the growling noises he was making were getting louder and louder. The crocodile had now wiped every other toy off the table, and although the shark put up a bit of a fight it finally joined the rest in toy Armageddon, scattered across the floor. The Boy looked up, crocodile still firmly in place, and seemed to suddenly remember that the three of us were also in the room. Playtime was over: it was time to turn his attention to the adults.
Here in the UK there’s quite a famous clip featuring chat show host Michael Parkinson. His show went out in the 1970s and it was all very civilized and British. Guests chatted about their latest film, drank their whisky and smoked their cigarettes. One of those guests was a man called Rod Hull, a puppeteer whose character was an emu called, somewhat originally, Emu. It’s probably politest to describe Rod Hull as ‘eccentric’. Emu the bird-puppet-thing under Rod Hull’s nominal control kept interrupting the conversation and trying to bite Michael Parkinson in the face in a very un-British way. The audience went wild. Well, if you’ve seen that interview you pretty much know what happened in the rest of that play therapy session, minus the appreciative audience and with a large crocodile puppet in place of the malevolent Emu. Was it because we were talking about The Boy? Maybe. Or perhaps it was just the noise of people talking that he found so difficult. Whatever it was, he clambered between the three of us, the crocodile launching at our faces, trying to close our mouths or grabbing us by the arm, with the small human hand beneath the fabric teeth twisting our skin as it grabbed.
‘The crocodile is very angry,’ Frances commented calmly, seemingly unfazed by any of it. ‘I don’t think the crocodile likes to be ignored. Maybe Dad would like to play with the crocodile for a while?’ Oh, Dad can think of nothing more he’d rather do. I left her and Mum to carry on filling in our chequered history and I took my place next to The Boy at the toy table. He calmed down a little and, between the two of us, we created some sort of game. I picked up the toys that had been thrown on the floor, the crocodile bit them or hit them with the top of his head and then threw them on the floor again. I picked them back up and passed them to the crocodile.
We had four sessions with Frances. Each session would begin th
e same way with the toys lined up and The Boy helping himself. Over time I realized that the toys weren’t just placed randomly on that table; there was thought given to it, an order. Even the initial selection of toys had a purpose. And each time The Boy did exactly the same thing – he burst into the room, took the crocodile puppet, placed it on his hand and then attacked every other toy until they were all on the floor. Then once again he’d turn his attention to the adults.
Whatever he did, Frances didn’t reprimand him for it. Instead, she started to give a commentary on what he was doing, to put his actions into words.
‘The crocodile is making lots of noise today. He’s biting a lot. The crocodile has thrown the woman and the boy away. Now he’s biting the dinosaur’s neck. The crocodile is trying to bite Dad’s arm. Now he’s biting Frances. He’s trying to bite Frances’s mouth.’
Then she started to colour in the rest of the story, to speculate on how the crocodile felt and what his motives might be.
‘I don’t think the crocodile likes it when people talk about biting. The crocodile seems very angry with everyone. I wonder what is making him angry? The crocodile thinks nobody understands him and he gets frightened sometimes. And when he gets frightened, that can make him angry. But the crocodile wants to be friends with people. He likes having friends. Being angry all the time can be very lonely. But he doesn’t know how to make friends. The crocodile doesn’t really like biting. He bites when he wants things to stop. He bites when he’s scared. He bites because he doesn’t have any words to say how he really feels.’
I can’t do it justice here, the impact of those sessions – it just seems like a load of mumbo-jumbo when I write it down. The effect on The Boy was extraordinary. Within four weeks, the crocodile became calmer. He bit less. He even used to rest his head on Dad’s arm and wait for it to be stroked. He made friends with the shark and, by the end of the session, more toys would remain on the table than the previous week. I was a convert – the time we spent with Frances gave us insight, a way to The Boy that we just hadn’t had before. That phrase came back to me again, ‘All behaviour is a form of communication,’ but never was it made more clear than during those sessions. For years I had been waiting for The Boy to tell me how he felt, to explain to me what was going on. It turned out he’d been telling me all along; I just hadn’t known how to listen.
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