Sam and Chester

by Jo Bailey

  Lynda then told me that she thought I’d be perfect for a new teaching assistant opportunity that had just come up. The school was looking for a mum to help out in the classroom, and given my language skills she also suggested that I might be able to teach the children in the mainstream school some Spanish. Lynda thought the informal role would help me to make friends and, of course, I would also be able to see Sam and check he was settling in OK.

  Though I was keen, I was also concerned that my presence in Sam’s classroom might affect his progress, but Lynda reassured me it would actually help to put Sam at ease, plus I’d only see him first thing, at registration. Sam would then go off to the CAIRB while I remained helping out in the mainstream class.

  I mulled it over. How can I turn down the chance to keep a closer eye on Sam after all those months of being kept in the dark in Spain?

  ‘When do I start?’ I said, beaming at her. All the paperwork went through quickly and before long Sam and I had a new routine of our own as we both spent our days at the school.

  Watching Sam in class every morning not only put him at ease, but also assuaged some of my long-held worries about his future. One of my greatest concerns had always been whether Sam would be able to live a normal life. Would he have friends? Would he be able to take care of himself if, God forbid, anything happened to me?

  Seeing Sam happy in a classroom full of neurotypical children told me that he could. He didn’t necessarily interact with them, but he wasn’t anxious and he wasn’t lashing out. It was such a relief. It gave me hope that he could one day live a full, happy life alongside others.

  I always stood at the back while Mrs Langdon went through the register. With the surname Bailey, Sam was always second to have his name called.

  He sat cross-legged on the floor, his arms neatly folded in his lap.

  ‘Yes,’ he responded confidently to the teacher, every morning.

  And every morning, I felt a flutter of pride.

  That’s my boy.

  My new job in the school was a mixed blessing, though, for the fact that I could keep a close eye on Sam also had its drawbacks – namely when it came to breaktime. My classroom was on the ground floor and it gave me a great view of all the goings-on in the playground. One morning, I was tidying away the toys in time for the next lesson when, out of the corner of my eye, I saw Sam standing by the fallen oak tree that dominated the far end of the playground. The children often used it as a climbing frame, but on this day my son was the only one there.

  Although no longer in practice, at that time the teachers dressed the children with autism in luminous vests at breaktime. A couple of them were ‘runners’ – an unofficial term used to describe those children who had a tendency suddenly to take to their heels, which could be dangerous as a lot of people with the condition don’t have any awareness of danger. The brightly coloured vest meant I could spot Sam a mile off, but in truth I didn’t need it. He stood out a mile on his own. He was running up and down the tree, flapping his arms. Every now and then he’d stop and hold his hands in front of his face while he studied his fingers, and then he was off again, lining up his eye with the straight contours of the tree. Not one other child held his interest. Not one other child wanted to play with him.

  I can’t put into words how upsetting it is to look out of a window and see a playground full of other children having fun, kicking a football around and chasing after one another, and then there is one little boy, your boy, who is all alone, running up and down and flapping.

  I felt a lump form in the back of my throat.

  My only consolation was knowing that Sam wouldn’t have been upset to be alone. Children with classic autism tend to seek isolation and exclusion, whereas children with Asperger’s don’t – many really want to make friends but don’t know how to. But Sam wasn’t like that.

  It still broke my heart, though. So much so, I eventually thought about giving up the job. I found it too hard to watch, and not intervene – not to go and be his friend, or encourage him to join others when, really, he was happy on his own.

  At this time Darren had moved to a rig just off the Egyptian coast but, of course, he was still only a phone call away, wherever he was working. He was employed by a company based in Scotland, so all I needed to do was ring Aberdeen and I’d be rerouted directly to his office. I felt so emotional whenever I told him the stories of seeing Sam alone in the playground. Darren could always hear in my voice how difficult I found it.

  ‘Why don’t you give up the job?’ he said matter-of-factly one day. We agreed that it was probably best for me to give up my voluntary position at Sam’s school. Darren knew that I wanted to find paid work, but as we talked he could sense my concerns about not being able to be there for Sam if I was in a full-time job. He put forward the idea of me not going to work at all.

  ‘Well, how will I pay the bills?’ I reasoned.

  ‘I’ll pay them!’

  I was stunned into silence. It was the most generous thing a man had ever done for me. I was used to supporting everyone else, not the other way around. Apart from when I was on maternity leave, I’d never been without a job and I’d always paid my way. The idea of Darren supporting me went against everything I believed in: that women should be strong and independent. His generosity left me speechless.

  ‘I don’t know what to say,’ I stuttered eventually.

  ‘Say yes!’ he urged.

  ‘I don’t know . . .’ I started.

  ‘You could put all your energy into helping Sam instead,’ he said persuasively.

  I paused to think. He had a point. Though Sam was much more settled now that he was in a school that knew how to deal with his needs, he was still struggling with the most basic life skills. Devoting my time to helping him now, while he was still young, was the best way to give him the best possible chance of living a life where he could be part of society, and not just sitting on the sidelines. That was what I wanted for him, more than anything.

  I could hear Darren breathing on the line, patiently waiting for my reply.

  ‘Thank you,’ I said simply, as I accepted his incredibly generous gift.

  Little did I know it, but Darren and I had just made a crucial decision. For Sam was about to need me more than he ever had before.

  CHAPTER EIGHT

  No Way Out

  I’M NOT SURE if it was a delayed reaction to the move to England, or the fact Sam was going to and from Spain intermittently to see his father and was disturbed by the break in his regular routine, but we hadn’t been in the UK all that long before something destabilised my son – and dramatically so.

  Firstly, Sam started to develop certain obsessive behaviours: actions I hadn’t seen him do before, but which were all too familiar to me from my hours of reading on the internet.

  He became very fussy with his food. Sam refused to eat anything that was white or even had a hint of white in it. Fish fingers and beans had previously been one of his favourite meals, but now he sat at the table staring intently at the breadcrumbed finger like it was going to leap off the plate and attack him.

  ‘Come on, Sam, eat your dinner,’ I encouraged. Sam looked in my direction, glared at the fish finger and then proceeded to surgically remove all the breadcrumbs with intense concentration. He cast aside the stripped bit of fish and munched away at the crumbs.

  Just as I was working around the white phobia, Sam developed a new set of eating rituals. If certain colours touched on the plate, he refused to eat any of his dinner. He liked his food to be separated neatly, so that he could eat the items separately and identify their tastes. That way, eating his dinner was safe and predictable. But if the food was mixed up, it became something different – something disordered – and it was a change he was unable to cope with.

  Knowing the reasons for his behaviour didn’t help me to solve the problem, however. I had to learn which colours to put on the plate, and which to avoid. I was constantly having to think on my feet to come up with way
s to get around these new problems.

  The next hurdle came when Sam couldn’t bear for anyone to cut his hair or toenails.

  ‘Hurts!’ He would scream and thrash his arms around, pushing me off when I tried to trim his nails. I would calm him, get into a good position and try to bring the nail scissors closed gently, but he’d kick off again, having an outburst of mammoth proportions. He would scream, punch, kick my shins . . . essentially, lash out in any way he could to show me the full force of his rage.

  Another difficulty I faced was in not knowing what was autistic behaviour and what was ‘neurotypical’ – was Sam behaving the way he was because of his autism or because he was just being a typical child wanting to push the boundaries?

  He had glowing reports from school; it was when he got home that was the problem. Sam was storing up his frustrations and anxiety – caused by his day not going as well as he liked; maybe it was too noisy or there’d been an unexpected change in his routine – and unleashing them all as soon as he set foot through the door.

  It would have made for an easier life if I gave in to the autism, but I knew I had to be strong, to keep pushing Sam on the things he needed to do, about which there was no choice, or his behaviour would control our lives.

  ‘If only we could build a sensory room in the house,’ I said to Darren after another long and exhausting evening trying to coax Sam to eat and go to bed. Living in a rented property, though, that was out of the question. Darren came up with a bright idea, however. He suggested I buy Sam a massive beanbag that could be a ‘chill cushion’. It would be a substitute sensory room – a squidgy, soft place where Sam could go to vent his frustrations.

  Lynda Russell loved the idea and immediately rustled up a storybook for Sam to explain what the cushion was and when he should use it: ‘This is my chill cushion. I sit on my chill cushion when I’m angry.’

  It worked a treat. Because Lynda had been teaching Sam to self-regulate – for example, by showing a card to his TA in class when he needed a ‘flap’ – Sam could apply the same principles at home. He soon got the hang of knowing when he should take himself off to the chill cushion.

  But, just as I was catching my breath, another problem presented itself.

  Sam’s love of aeroplanes had by now morphed into an obsession. He would spend hour upon hour drawing every model under the sun. At first we were knocked out by how brilliant they were. He was only five but he could draw in 3D – his aeroplanes looked as if they were flying off the page; it was incredible. But pretty soon the planes were all he cared about. The few words he had been speaking dried up entirely as he ceased all communication. He did this not because he had lost the little language he had, but because he was so immersed in drawing planes he chose not to speak.

  Sam would sit at the table or lie on his belly on the carpet for hours, transfixed by his creations. When he wasn’t drawing, Sam was in the garden gazing up at the sky for flight paths. His acute vision meant he could pick out planes that I couldn’t even see.

  I was on the phone to Darren one day when I heard Sam let out a roar of anger. Then came a thumping noise.

  ‘I’m going to have to call you back,’ I said hurriedly and hung up.

  I rushed through to the kitchen to find Sam stabbing his drawing with his pencil.

  ‘Sam, stop,’ I pleaded.

  He wouldn’t listen. He thrashed at his artwork, carving it up into dozens of tiny pieces. I tried to pin his hands down but he pulled free. Sam was hellbent on obliterating every last scribble. I knew what was wrong: he had made a mistake as he was sketching. And mistakes, however minor, in Sam’s mind were errors of an astronomical scale that knocked the world off its axis. Any mistake he made would cause him to become so angry and frustrated that he would have a full-scale meltdown.

  I felt helpless watching him rage and destroy his work. It was one thing catching a meltdown before it started, but quite another trying to stop it in mid flow. I had no clue what to do other than ride out the storm.

  It took over an hour before Sam finally calmed down. I sat at the table stroking his hair. Sam’s beautiful face looked angelic and peaceful, as if nothing had happened, whereas I was left shaken and exhausted.

  Sam’s meltdowns continued. It got to a point where every time he made a mistake he lashed out. He spent hours drawing his planes, so by the end of the day he was sitting in a sea of shredded paper.

  I should have anticipated what was coming.

  Sam’s anger was reaching fever pitch. And, one day, he channelled it from his pictures on to his brother.

  I was making supper. Will was sitting next to Sam at the kitchen table, watching Sam draw. The boys had stopped playing together like brothers several years before, but as Will had grown up it hadn’t stopped him trying. He was always ready for a game, looking to reconnect with Sam, but Sam’s autism meant he preferred to do things alone. Will picked up a crayon, smiling, looking for Sam to join in. I turned my back for a moment to take the pots off the hob.

  ‘Muuuuuuummmmmy!’ Will screamed for help.

  I turned around to see Sam tearing at Will’s face with his hands, like it was one of his pictures.

  ‘Sam, stop!’ I restrained him, locking my arms across his body.

  Will was wailing in pain. Blood was trickling down his cheek from where Sam had scraped his fingernails along his brother’s soft skin. I needed to help Will, but I had to calm Sam first or he might attack him again. Sam was struggling like a fish caught in a net. I squeezed my arms harder, locking him down. Meanwhile Will was crying with pain and from the fright of having his brother lash out.

  ‘Mummy’s here.’ Knowing Sam had calmed down, I rushed over to Will’s side.

  He was sobbing. Poor Will didn’t understand – he was only four.

  As I cleaned Will’s cuts, Sam returned placidly to his drawing. You can imagine how difficult it was to tell him off because, just like Will, he didn’t understand what he’d done. Sam obviously needed to draw – it was an outlet for him – and as Will had tried to distract him from that he’d lashed out at him in frustration. Nonetheless, I tried very hard to teach Sam right from wrong and to discipline him. I got out his chill-cushion storybook and reminded him again that this was where he had to go if he felt angry.

  Despite my efforts, it was evident things were getting out of control. The perfect new life I’d planned for us in Devon seemed to be unravelling.

  I was exhausted. Luckily, my sister and mum were due to visit that weekend. I couldn’t wait for them to arrive. Sarah was bringing Tom and Dan, and I prayed that having them there would help with whatever was going on with Sam. I was pinning my hopes on us all being together as one big happy family. Darren was still stuck on the rigs, but he’d be flying over not long after.

  It had been three months since I’d seen my family. The time finally came to go and collect them from the airport. Sarah abandoned the luggage trolley as soon as she saw me and came running over, her arms outstretched like wings. Any bad feeling about me leaving Spain had vanished. In fact, she had great news: she was thinking about following in my footsteps by moving to England. She had just got together with a new man – my best friend from university days, Simon – and the pair had fallen madly in love and were now making plans for the future.

  I hugged my sister and my mum in turn, finding their familiar warmth comforting. ‘I’ve missed you,’ I said, meaning every word. I could empathise with how Sam must feel when he came home from school, for seeing my family made me want to release all the sadness and anxiety I’d been storing up over the past few months. I bit my lip; the last thing I wanted to do was start the weekend off by being all emotional.

  Tom and Dan were over the moon to be reunited with their cousins. They chased Will around the luggage trolley, bumping into our legs as they went. Sam was smiling too. Maybe all he needed was to be reunited with his family . . .

  The journey from Exeter airport was filled with making plans. My mum and sister were knocki
ng around ideas for fun family outings, the suggestions flying back and forth in quick succession. I threw in something I’d heard about from the mums at the school gates.

  ‘Apparently there’s a miniature pig farm just around the corner from where we live,’ I said excitedly.

  Everyone in Devon had heard of Pennywell Pig Farm, but its fame had clearly not crossed the Channel.

  ‘Miniature pigs?’ my sister exclaimed, as if I’d said a foreign word.

  I explained how they were tiny pigs that had been bred as pets. They were also known as ‘teacup pigs’.

  ‘They’re all the rage, don’t you know! Jonathan Ross and Charlotte Church have both bought pigs from the farm,’ I added with a chuckle.

  But the happy mood of the car journey was short-lived.

  Minutes after stepping through the door, perhaps disturbed by finding all these people crowded into his home, Sam started running up and down the length of the living room, smacking at his eyes with his fists. It wasn’t just his brother he lashed out at now: it was himself.

  ‘Where’s my plane?’ he cried. Smack. Smack. Smack.

  The noise of each punch cut right through me. I lurched into his path, trying my best to obstruct him. Sam ploughed straight into my stomach at 100mph and I grabbed at his arms to stop him in his tracks.

  My mum and my sister were stunned into silence. They had both lived through Sam’s regression with me in Spain, but neither of them had ever seen anything like this.

  I managed to calm Sam a little, enough for him to run off and get his model aeroplane and felt-tip pens. But as soon as Tom or Dan went anywhere near him, he would lash out again.

  ‘Leave me alone!’ he yelled at his cousins, his voice rasping with anger. His world had been turned upside-down – but I could see the cousins felt the same way. Those poor boys didn’t know what had hit them.

  ‘Why don’t you three go and watch some videos?’ I suggested to Tom, Dan and Will, trying to contain the situation.