For the fifth session, Frances asked if she could see me and Mum alone. She just wanted to discuss how the sessions were going and how we felt things were moving forward. It was the same room but without The Boy and the toys laid out on the table, but it couldn’t have been more different – eerie. Three solitary chairs and four bare walls with nothing but a laminated poster, above the light switch, detailing what to do in the event of a fire. Only the quiet hum of traffic outside filled the silence where the crocodile used to be.
Frances had some concerns. She felt that while The Boy was making real progress, there were many behaviours he was exhibiting that were beyond her scope as a play therapist. She wanted to get another opinion. She had made a referral to the autism clinic. In the meantime, she said, it wasn’t in The Boy’s best interests to continue the sessions, not until a proper diagnosis had been made.
We left in silence. It was difficult for me and his mum, going into appointments together and then leaving separately afterwards. No one to talk things through with. And all we had between us was that word, ‘autism’. First mentioned by my brother, it had been said in whispers a few time since then but now here it was once more, loudly filling the gap where normally The Boy would have been.
My thoughts were interrupted by my mobile phone ringing.
‘John? It’s Jackie, from the school. There’s been another incident. We’re going to have to exclude him again. Can you come to collect him, please? Sarah feels a meeting with you and Mum might be useful.’
Oh crocodile, one day we’ll find a way to put all of this into words.
CHAPTER FIFTEEN
Let’s Add a Label to It
Andy Murray, Britain’s finest tennis player since seemingly forever, won another tournament on Sunday. I tried to get The Boy interested. I told him that Great Britain won. He couldn’t have cared less though, because he doesn’t live in Great Britain. He lives in London.
I like that The Boy has no sporting allegiances. I find it really refreshing. We went to a football match last year and he decided which team he was going to support when we got there. He picked the blue one. When they changed ends at half time he switched to the red one.
The least successful sporting event we tried was the 2012 Paralympics in London. Oh, the irony! By this stage the wheelchair featured far more in our lives than it had done before so Dad decided to book tickets for the wheelchair basketball. Dad had decided that it would be a positive display of disability that would fill The Boy with hope and courage for the future. Sometimes, Dad makes really stupid decisions.
We arrived at the huge venue on the banks of the river Thames, resplendent in our Great Britain colours. We had a good view of the court from the wheelchair-viewing area; we unfurled our Union Jack flag and it was hung with pride from the balcony. Then we waited. And waited. For an hour. By the time the basketball started, the iPad had been exhausted and the drink/eat/toilet card had been played too early. Dad could feel this one slipping through his fingers.
Wheelchair basketball is an amazing sport. It’s fast and furious. And very, very loud. It’s accompanied by upbeat music, flashing lights, people shouting and it’s played indoors – unlike a football match there is no open sky for the sound to dissipate into. It hits the roof of the stadium and rains back down on you. Six minutes we lasted. For The Boy they were six, long, painful minutes.
The hitting out was subtle at first. Then, as the sensory overload reached critical levels, so did the behaviour. Pinching, scratching, screaming. I decided to make a run for it. Grateful that we’d brought the wheelchair, I wheeled him out of the stadium into the area outside. By then he was out of control, trying to hit me any way he could, desperate to bite, to hit, to scratch, anything. I thought being away from the basketball would make things better, but it just seemed to make them worse.
By this point, two security guards had arrived. They stood to one side, not sure what to do, watching. And to them it must have looked like a grown man was having a fight with a boy in a wheelchair. I pushed onwards, thinking the further away from the noise we got the more The Boy would settle. He didn’t. He was flinging his arms at me, filled with a rage I hadn’t seen before, even by his standards. And all the time we were followed by security. Just watching. Radios in hand.
The further away we walked the more agitated The Boy became. Security were now calling for back-up. I thought the police would be called, which sounds very dramatic but it’s very hard – when someone is hitting you and just wants you to go away, but you can’t leave them alone for their own safety and you just don’t know what to do.
Then along came one of those heroes of the Olympic Games. The volunteers who make it all happen. And I thought, here we go, a do-gooder. He smiled at me and then knelt down next to The Boy’s wheelchair. ‘What’s the matter?’ he said to him calmly. ‘Can I help you?’ His face was in perfect reach for The Boy. I was about to warn him he’d better move when suddenly The Boy stopped screaming and looked at him.
‘My flag,’ he said.
Then it dawned on me. We’d left the flag tied to the balcony. And so the volunteer did his own sprint down the corridor and moments later returned victorious with the Union Jack flapping in his hands.
‘Thank you,’ The Boy said.
And just like that, it was over. There were many reports in the newspapers that it was the volunteers who had made the London 2012 games such a success and every one of them was correct.
We quietly went home and sat on the sofa to watch the rest of the basketball on the television with the sound turned down and the Union Jack flag draped across our legs.
The red team won.
MY SON’S NOT RAINMAN BLOG
The appointment came through for the autism clinic. It would be with a consultant paediatrician and a speech and language therapist. We were to allow two and a half hours.
I can’t remember what emotions were coursing through us as we sat in the waiting area that morning. I’d started reading up about autism once again and there was still so much that didn’t match The Boy. Yes there was development delay, but he didn’t line his toys up, he didn’t walk on tip-toes and he certainly didn’t prefer his own company. Here was someone desperate to interact with others; he just hadn’t got the instruction book.
We filed into the room and this time there were four of us. The Boy had been in his school for around nine months and, as well as me supporting him at lunchtime, he now had a one-to-one teaching assistant in the classroom who had come along too. She knew his struggles better than anyone and she also knew he would find it hard to cope with such a long assessment without some respite now and again. She became an important part of the family in those days.
As usual, the Boy burst into the room like a whirlwind. His time in play therapy had led him to believe that behind every door in the building were tables filled with toys. He scanned his surroundings, spotted a cupboard in the corner that might well contain something interesting and sat down in front of it. The room was much larger than the last consulting room, with a two-way mirror across one wall. After initial introductions, the speech and language therapist took her place next to The Boy to play, his teaching assistant already trying to return the contents of the cupboard to their shelves. The Boy ignored the new faces, as he did most people he didn’t know on a first meeting. The paediatrician sat down with me and Mum and asked the same old questions once more.
‘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?’
She paused for a while on the last question. I hated talking about it, wanted to get past it and on with our lives but, even here in this room, it still overshadowed everything.
There was a link, she explained, between autism in a child and bipolar disorder in a parent. The research was pa
tchy but there was no doubt it existed. I nodded – Google had already told me that, but I’d put it to the back of my mind until now.
She continued to ask about schooling, nursery, behaviour, routines. Every now and then we’d be joined by The Boy, trying to drag one of us to the corner of the room where he dominated the games being played. It all seemed strange, almost wrong – here we all were discussing him, yet he had no clue as to what any of it was about. Even the games he was encouraged to play were diagnostic tests attempting to discover just how his mind worked.
Halfway through the session, the two professionals swapped roles. The paediatrician headed over to play with The Boy while the speech and language therapist sat with me and Mum. More questions; around excessive dribbling, sound formation, repetitive phrases. We went on too much with some of the answers – the chance to talk endlessly about the one person we loved more than anything meant we became carried away. I noticed it all the time in meetings with staff at school and with healthcare professionals – their eyes would begin to glaze over as we told them the story about a funny thing that happened once when our son was trying to cut a sausage with a spoon. Parents, we don’t know when to stop.
By this point The Boy had had enough. Being confined in one room, even with toys to play with, was just too much. His voice was becoming louder from the corner. I could hear his teaching assistant trying to calm him. He started to move away from the corner where he’d played for so long. As if discovering the rest of the room for the first time, he noticed the door we’d walked through earlier. A way out.
I got to the door at about the same time he did. He had been so close and yet so far. The frustration just spilled out of him. The Boy was desperate to get out of that room. He became distressed and angry, tears of rage spilling down his cheeks. Like a deep-sea diver suddenly deprived of his oxygen tank, the panic in his eyes was all too real. It all became too much and he sank his teeth into my arm.
I suppose I should have felt relief that the professionals had witnessed the behaviour that had been so difficult to manage. Me, his mum, even the poor teaching assistant, we’d all been bitten so often, it had just become a part of our lives. And here it was for them to see. And then once he’d bitten, it was like the life force drained out of him. He became docile, compliant – often after a meltdown he’d sleep, the effort it took to maintain that level of ferocity taking it out of him.
After what seemed like forever, the professionals finished their assessment. They now wanted to go away for a few minutes and discuss their findings. The Boy was calm. His teaching assistant nipped out for a cigarette while he and I played ‘Scooby-Doo’ in the corner, forever grateful that his mum had packed his favourite figures in her bag as an emergency back-up. That was life with The Boy, each pocket filled with a little something that might buy you a few extra minutes or even seconds when it all got too much. A carton of drink. Breadsticks. Power Rangers.
I kept glancing up at the mirror across the wall. Were they behind there, looking in, making their decision? Or were they in the smoking area outside, laughing and joking before flipping a coin to decide the outcome? It was such a surreal few minutes. There was no blood test that could give us the answer, no brain scan. They weren’t going to come in and place an x-ray on the light box above the desk and discuss their findings. They were just two people having a chat before they decided whether or not my child had a major brain developmental condition. They came back in and sat down.
I’d only really had one other experience of hearing significant medical news from a professional, years ago, when I was told by a nurse that my dad’s cancer was terminal. My mum knew but bottled telling me, deciding it was easier to let it come from the nursing staff. I don’t blame her really, she’d have only worded it badly, wanting to get the message across but at the same time wanting to protect her offspring. We were in a small room at the end of the ward where it was quiet. ‘I’m sorry,’ he said. ‘I’ll leave you alone with your thoughts for a few minutes. I’ll be right outside if you need me, just take your time.’ It was that quietness I remember the most.
This time was different. I had Shaggy and The Boy had Scooby-Doo. Velma, Freddy and Daphne were round the other side of the cupboard. We were running from monsters that were hiding behind the building blocks. ‘Run, Scooby, run!’ I called out as we played in the corner of the room. Mum sat in a chair opposite the paediatrician and speech therapist. The teaching assistant returned from her cigarette and stood in the corner of the room awkwardly, suddenly feeling out of place at being party to such an intimate moment.
I can’t remember the exact wording. I want to write it here, as if it was some profound step in our journey, but it would be a lie. I can’t remember if it was delivered in matter-of-fact fashion or if it was a whispered, ‘I’m so sorry.’ It just happened.
The Boy had autism. Mum nodded her head, slowly, taking it in. Stoic as ever, I burst into tears. I don’t know why. I don’t know if they were tears of relief, of sadness or of fear. Maybe the tears were my own form of biting, a release from all the anxiety. Whatever they were, they made the atmosphere a tad uncomfortable. It’s all right for a mum to cry, weeping silent tears into a tissue as they talk on. But for a dad to start full-on blubbering from the corner of the room while clutching a Shaggy doll while his son screams, ‘Why have you stopped playing?’ is all too much.
I started to blurt out all the reasons why he couldn’t be autistic, spouting every stereotype I knew. ‘But he makes eye contact,’ I pleaded.
‘I’m sorry, John,’ the paediatrician countered kindly. ‘We’ve been in this room for nearly two and a half hours and he hasn’t once looked at me, even when we had a conversation.’
‘But he has an amazing imagination! We’re playing “Scooby-Doo”!’
‘He doesn’t, John. He has your imagination. He copies you.’
My mind drifted away as they discussed the ‘triad of impairments’ with Mum, what it might mean for the future, the need to return for a chat about the genetic implications and here’s some leaflets on support groups, etc. There’d be a lifetime to catch up with all that, I knew, but for now I returned to playing with The Boy, hiding my tears from him and retreating back into our world of Shaggy and Scooby-Doo. Every now and then I’d catch snippets of the conversation from the other side of the room.
‘There aren’t any rules. Just do what you can to get by,’ the paediatrician was saying to Mum. ‘You can’t do any more than that.’
‘It’s a lifelong condition, but with the right level of support…’
Less than five minutes later and we were ready to go. All done. The Boy as oblivious to it all as he was when he walked in.
As we made for the door, the paediatrician turned to me and Mum and smiled warmly. ‘You’ve done an amazing job,’ she said. ‘Your son’s a wonderful boy. The only reason he’s come as far as he has is because of the work you’ve put in. You should be very proud.’
‘She says that to everyone,’ I muttered as we turned up the corridor and headed for separate homes. But those parting words meant more than she would know, to both of us. After years of being told it was our fault – our parenting, our lack of boundaries, inconsistent routines – here was someone acknowledging that we’d done OK. Maybe even better than OK.
We walked past reception, seeing another family sitting, waiting. The young boy was flapping his hands constantly, rocking in his seat. Mum was scanning a leaflet, ‘What to Do In The Event of a Complaint’. I almost wanted to wait, to see where their journey would take them, to see if they too were heading for the big consulting room with the mirror along one wall, taking their first precarious steps onto the conveyor belt of bad news.
Walking out into the afternoon sun, me and Mum turned to each other to say our goodbyes. ‘Coffee?’ she said.
‘Yeah, why not?’
The Boy slipped between us and held both our hands as we set off up the road. Everything was the same, yet nothing was the same.
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CHAPTER SIXTEEN
The School Run
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 but, if I’m honest, I took him with me because I couldn’t be arsed going while he was at school.
We were all done in approximately seven minutes. For someone with mobility difficulties, he can’t half whizz around a supermarket. 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 in the days before it was even law. 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.
My Son's Not Rainman: One Man, One Boy, a Million Adventures Page 12
