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 calories in a flapjack. If I had, I might have spotted the reddening and 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 into 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. The old dear turned round, glaring. People stared. Pointed. Whispered. 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 now he’s a bit older 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 to himself. And this might seem strange for some people to grasp, but I apologized to him. And I didn’t do it just to try to 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 Queuing – 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, compartmentalized into the different categories of 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. Every outburst comes when there’s a variant, 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 Queuing 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 4.06 p.m., 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.
Each time I remember to stop and see things through his eyes, 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 of 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 keep remembering to look at the world through the eyes of another. It’s amazing what you can learn.
MY SON’S NOT RAINMAN BLOG
The emotions of the days and weeks that followed the diagnosis were strange, more variable and unpredictable than the hot water in my mum’s electric shower. There was relief – relief that we finally had a reason, an explanation and, I suppose, relief that we weren’t responsible. Then came guilt – guilt for making this all about us when The Boy was still none the wiser, guilt for not getting him there sooner. There was fear too – fear for the future, not knowing what progress he’d make. And googling for answers, too, endlessly trawling the Internet but never quite getting the answer I wanted which is that everything will be just fine. Overall, I suppose there was sadness. Sadness for him, sadness for all of us.
We went back the following week to meet the paediatrician once more for a chat about genetics, about the increased risk of any of our subsequent children having autism. It seemed bizarre to be sharing this conversation with the person who used to be my wife. We smiled and nodded politely throughout. There will be no siblings.
‘Use the diagnosis to access services’ had been the initial advice. Now we had a diagnosis, people had to sit up, to listen. However, rather than open doors it closed them, at least at first. The play therapy that had been our only real success, surely we could return to that now. ‘No, I’m afraid not. Your son has autism. That’s the reason for his behaviour. We can no longer offer you play therapy. There are a number of parent support groups in your area for you to chat to other people in a similar situation.’
I took down the details but never went. I didn’t want to chat to other people about their children, I wanted it all to be about mine. And part of me still felt awful, still felt like we didn’t belong with the autism group. Fearing that we wouldn’t be accepted because we didn’t have ‘proper’ autism. We didn’t have the hand-flapping, little-boy-lost autism. We had the feisty, challenging one.
At least the diagnosis made a big difference on the school front. Turns out it’s harder to continually exclude a child with an autism diagnosis – Disability Discrimination Act and all that. We were now in year one and I’d stopped going in every lunchtime. I was still called unofficially, though, if not daily then every couple of days. It’s tough to know what to do as a parent – schools aren’t allowed to exclude your child unless it’s done formally, but they’ll phone you up and tell you, ‘We just want you to know he isn’t having a good day.’ I’d hear The Boy screaming or crying uncontrollably in the background and it used to break me. On paper I should have left him at school rather than coming to collect him, but sometimes as parents our hearts rule our heads. And I still believe that isn’t necessarily a bad thing.
The school now had the evidence to apply for a statement of special educational needs. This is a formal document detailing a child’s learning difficulties and the help that will be given. The idea is that if your child needs help at school – beyond what their teachers can provide – the statement will ensure they get the right help. It’s only really necessary if the school is unable to meet a child’s needs on its own. It’s important not just for parents but for schools too – it means additional funding, and a school that is named in the statement has a legal obligation to educate that child. (At the time of writing in 2016, statements of special educational needs are being phased out in the UK and replaced with education and healthcare plans.)
And so another meeting was scheduled with the head teacher. The paperwork was ready to be sent through to make the statement application. But there was a sticking point. The school felt it was the end of the line for them. ‘We don’t feel we have the expertise in-house. We think a specialist provision may be the best setting for him. I’m sorry, John. We’re unable to meet his needs.’
How many more times over the years would I hear those words – ‘unable to meet his needs’? And how many more schools would The Boy have to go through before he finally settled?
The irony was that the children who made the most noise left school with the least – mid-term, mid-week, even mid-lesson. Almost smuggled out of the back door. A few weeks later a parent might ask, ‘Where’s such and such?’
‘Oh, he left,’ would come the reply. ‘It was felt the school wasn’t right for him.’
I understand how incredibly difficult it could be, teaching a child who could be as disruptive as The Boy, especially while trying to meet the needs of the rest of the class. I got all that. But I had to see it from his perspective – every ‘unable to meet his needs’ has affected him, left him wondering why he suddenly can’t see his friends anymore, not really understanding any of it. They’ve left a ma
rk on him like a badly drawn tattoo. It may well fade with time, but it will always be there. And so, with the decision made, I made an appointment with Mum to visit the local special school.
I’m not sure what we were expecting when we turned up. Even if I wouldn’t admit it at the time, I was scared. Scared at what I’d find. Scared that I wouldn’t interact in the right way, wouldn’t do the right thing. It just felt strange. Yet, walking through the door, everything seemed so ordinary. Everyone seemed so matter-of-fact about it all and it all seemed so run-of-the-mill. I found myself desperate to see the other children, to see what they looked like. I needed to grade them in my head, to see if they were ‘better’ or ‘worse’ than The Boy. What a messed-up way of looking at the world.
The head teacher met us to take us on a tour of the school. She explained that we might see some behaviours that were different and that it could be difficult for some of the children to deal with strangers coming into the classroom. For that reason we wouldn’t enter every class. She spoke on one level the whole time, no rise or fall in her voice, no facial expressions whatsoever. I thought how much The Boy would like the consistency, the sameness – but how unnerving it seemed to me.
As we walked through the school I was struck by how ‘school-like’ it looked, how normal. That fear I had when I first walked in there was real. Even the very notion of disability was still new to me and I suppose it terrified the life out of me. There was a comfort in seeing a school hall looking like a school hall and a playground looking like a playground. It made it all feel a bit less daunting. There were even display boards filled with children’s work. I scanned them, taking it all in, looking for evidence of how old the children were, who’d created the work, how severe or otherwise their disability might have been.
We entered the reception class with the youngest children in the school. It was warm and friendly – a happy place. They say a picture paints a thousand words and never was that more true than in a special school. Visuals everywhere, small cartoon drawings showing what was happening now and next, what day it was, when lunch was. There were about ten children in the room and three staff. It struck me how calm it seemed, how quiet compared to The Boy’s previous mainstream class of thirty-one.
As we made our way towards the next classroom, the head stopped us in our tracks. ‘There is a young boy in the next class who finds people visiting the school particularly difficult. For that reason we won’t go in and disturb the lesson, but given it’s the class your son might join should he come to the school, you can have a look through the window of the classroom door.’
I looked, taking everything in, planning The Boy’s life in twenty seconds. If this was to be his class, I needed to see what role the people inside might play. Who would be his friend? Who would come round to play? What did the teaching assistants look like? Did the teacher look happy? A boy in the corner of the room spotted me. He grinned and, quick as a flash, he ran towards the door. As he got closer, he flung his entire body at the door, pressing his hands and face against the glass window and wailing at the top of his voice, ‘HELP ME! THIS IS HELL ON EARTH!’
I swear he grinned at me again as a teaching assistant gently led him back to his seat. ‘That’s Aaron,’ the head said, completely unfazed as she pushed open the double doors at the end of the corridor. ‘Aaron sometimes has difficulty expressing himself.’
I turned to The Boy’s mum and smiled. We’d found our school.
CHAPTER SEVENTEEN
Working Nine to Five
Yesterday was teacher training day, so a day off for The Boy. I decided to drag him 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 eight million people who live in London seemed to have also decided that yesterday was the perfect opportunity to visit Legoland.
The Boy coped well with the two-hour tailback getting into the car park; he even managed the one-hour queue at ‘guest services’ for the exit pass to help children on the rides who can’t cope with queuing (oh, the irony). We were finally in. The Land of Lego.
Legoland is great for playing Spot the Person On The Autistic Spectrum. The place is filled with them. I may well be playing to stereotypes again, but Lego seems to hold a fascination for so many autistic children. It is the brick that never changes; it is consistent from one day to the next. The brick you can build walls with to keep the confusing world outside. 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 that takes you through different fairytale scenes made out of Lego. 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’s cars down a ramp. 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 had realized 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 are recreated in Lego. Utopia. We spent forever in there. 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 approached each exhibit he became excited and animated as he talked through each scene in front of us, hand gestures to emphasize 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 usually, 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 really seemed, I don’t know, connected.
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 I’d 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, 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.
MY SON’S NOT RAINMAN BLOG
As The Boy was due to start at his new school, I started to think about returning to work. It had been a long time and I was unsure what I wanted to do anymore. It’s fair to say my work history could best be described as ‘chequered’. A fifty-four-page CV listing jobs lasting little more than a few years.
The middle of the 1990s seemed to be the era of the temp contract, with employment agencies popping up left, right and centre, and the terms they offered suited me down to the ground. I won’t give you the full list here, but I’ve been around a bit – a chicken factory at the age of eighteen and by the age of twenty-two I’d worked in warehouses, shampoo factories and even fitted the odd bit of double glazing. I moved down to London with a loan from the bank based on a trainee management position at a leading retailer (I had a temp job in their warehouse for a fortnight, but don’t tell the bank that) and started a job stuffing envelopes before falling into a succession of diffe
rent admin jobs in the city. I settled down a bit, eventually, finally working for a management consultant, spending half the week in Amsterdam and half in London, thinking I’d hit the big time as I flew between the two on business-class flights. I felt I was it, in my cheap suits, bouncing cheques at exchange booths in airports. But all of that was before The Boy, before I became ill, before any of this. Before.
I knew I didn’t want to go back to those days. Something had shifted and I couldn’t decide what it was. Part of me thought that having The Boy taught me a sense of responsibility, that now we were on our own it was time to grow up. But maybe it taught me the opposite. Maybe the time I spent supporting him at school, trying to encourage him to make friends, entertaining him through the darker times, maybe it taught me the value of playing, of trying to be carefree. I thought of getting a job as a teaching assistant, but I really didn’t want to teach – there was certainly too much responsibility in algebra and fractions and following someone else’s idea of a curriculum. ‘Play’ was the thing I kept coming back to – from play therapy to trying to engage with The Boy in the moments when I’d ‘lost’ him – it had become an incredibly important part of our lives. Play is a very under-rated thing.
A job came up in a children’s care home, less than a mile up the road. It was a respite centre for children with severe disabilities, somewhere where they could come and spend a weekend or a few days every couple of months to provide a break for their parents and carers. I loved the sound of it – a place for the children to play, have fun, do whatever they wanted to do and be whoever they wanted to be without the constraints of having to follow a learning plan or strict rules.
I did more background work to prepare for that job than I have for any position before or since. I knew I wanted it. Every Child Matters, the Five Outcomes for a Child, the local authority’s safeguarding policy, I knew them all. The hours were rubbish (shift work with early starts, late evenings and sleepovers across weekends) but The Boy’s mum agreed to be as flexible as possible. And the pay was even worse – on a par with the shampoo factory from some years earlier. I knew our lives were different now, but it was a chance to get back to some semblance of normality. And maybe it was a chance to put everything we’d been through into some perspective.
My Son's Not Rainman: One Man, One Boy, a Million Adventures Page 13
