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 ways 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 knocking 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.
By now, Sam was frantically drawing at the kitchen table, clutching his model plane in one hand, trying to sketch his way out of sadness. I quietly slipped on to the seat beside him, hoping my presence would calm him a little. But there was no hope of that as I watched his frenzied scribbling. It wasn’t long before his pen skidded and Sam coloured outside of the lines. He’d made a mistake . . .
‘Noooooo!’ he screamed.
He hurled the plane and the pen to the floor and started flicking at his eyes with his fingers.
‘Sam, please.’ My voice trembled.
But he didn’t calm down. Barely two minutes later, Sam was screaming and crying because he couldn’t find a grey felt-tip pen.
‘Don’t worry, Sam, we’ll find your grey pen,’ I promised. I rifled through the drawers, desperately trying to find another pack of pens.
‘Jo, are you OK?’ Mum had crept up behind me.
‘I can’t talk, Mum, I have to get these back to Sam,’ I said brusquely, rushing past her, no time to talk.
I handed Sam the grey pen and, for a moment, he was calm. He started copying a plane from a sticker transfer – until he noticed the transfer had a hole in it, which meant it wasn’t perfect: always a trigger to set Sam off. He whacked himself around the head with his fists. Each successive thump grew in force and anger. I straitjacketed his arms down, trying to pin his arms to his body without hurting him; trying to stop him from hurting himself. I took hold of him by his wrists and was forced to pin him into the chair.
Mum was pacing around the barn, running her hands through her short hair. ‘Oh my God, oh my God,’ she muttered, aghast to see Sam so distressed.
My sister, meanwhile, was trying to keep the other three boys away from Sam’s violent meltdown. I was just trying to hold it together.
I wondered if I could distract Sam with some food.
‘Would you like some sausages and beans for tea?’ I asked brightly.
Sam looked up from his picture. His eyes were wild, as if he was possessed.
‘Leave me alone!’ he screamed, his little body trembling. He clenched his fists, ready to go again.
Smack! He hit himself in the face.
‘Sam, no,’ I murmured. He was rocking as I tried to hold his hands down.
I tried to distract him with food again. I was trying anything I could think of to calm him.
‘Sam, would you like a Frosties bar?’
This time he went for it.
‘Yes.’ He nodded.
Relief.
I rushed to the kitchen cupboards but discovered, to my horror, that we were out of Frosties bars. I could feel my heart racing and my head started to spin. The walls suddenly felt as if they were closing in. Desperately, I tried to control my looming panic attack, inhaling deeply and blowing the breath out slowly through my tightly pursed lips. This was no time to lose it. I knew I couldn’t be long: Sam was waiting.
‘Sam, would you like a Rice Krispies bar?’ I held out the alternative snack, praying to God he would accept it, while still trying to regulate my breathing.
‘No, Frosties,’ Sam insisted, before he burst into tears.
Mum tried to step in.
‘Come on, Sam, have a Krispies bar instead,’ she soothed, trying to persuade him. She didn’t understand that it was almost impossible to stop the meltdown once it had started.
Sam’s tears turned into thick, heavy sobs.
I scooped him up into my arms and gently rocked him back and forth, singing a lullaby and stroking his head. It was over an hour later before Sam had worn himself out enough that I could get him into bed. I curled into a ball next to him, every ounce of me drained.
‘Tomorrow, we are going to Pennywell Farm,’ I whispered. I could barely speak, my tongue was so heavy with exhaustion. I lay there for a long time, even after Sam had drifted off to sleep.
Then I saw a beam of light against the wall, as my mum pushed the door ajar.
‘Jo, are you OK?’ she asked tentatively.
‘Yes,’ I lied.
I was far from OK, though. I didn’t know what a breakdown felt like but I didn’t feel far from one. All I wanted to do as a mum was keep my children safe, but Sam’s behaviour was getting dangerous – for him, for Will and for me. I’d prepared Sam for this family visit with visual aids, but it hadn’t been enough. Was anything ever going to be enough to prevent him melting down?
My mum hovered in the doorway. She knew me well enough to know when I wasn’t telling the truth. She knew I wasn’t OK.
My chest was so tight inside that it felt like someone was sitting on it, crushing me. I could barely breathe. I’m not sure I would have managed to pull myself up and out of my increasing panic if it hadn’t been for my mum. But she was there for me, as she always had been.
Just as I’d put Sam to bed, my mum now guided me into mine. Then she lay on the bed next to me, trying to console me, to support me.
‘What am I going to do?’ I asked her.
I felt as if we were reliving that moment in Spain when I’d reached breaking point and crept down to the study to ring my mum for help. I felt as desperate and as helpless now as I had been then. It seemed it didn’t matter how hard I tried, every road led to a dead end.
I’d crusaded to find out what was wrong with Sam. I’d fought to save my marriage and then battled in court to win the right to get the care my child so desperately needed. I’d championed to get Sam into one of the best schools for children with autism. I’d left everything I’d known for the past seventeen years behind in order to start a new life. But it had all been for nothing. Our ‘fresh start’ had just been another dashed hope.
And when you lose hope, what else is there?