by Jo Bailey
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?
CHAPTER NINE
Silver Lining
MY FAMILY TAUGHT me the answer: Love. I was lucky I had my family and Darren to pull me out of my darkest moments.
Mum told me to hang in there and when she greeted me the following morning she was still on a mission to cheer me up.
‘We are going to see the little pigs at Pennywell Farm today, maybe that will perk Sam up!’ she said brightly, squeezing my hand encouragingly.
I’d heard some wonderful stories about the teacup pigs and their healing powers. Being a little bit of a sceptic, I doubted a micro pig could really make that much of a difference to someone’s life, let alone ‘heal’ them, but there was one particular story I’d heard that was hard to forget.
A mum who I’d met while working at Manor Primary had told me about a disabled boy who’d visited Pennywell Farm just days after one of the sows had given birth to a litter of eight piglets. The teenager was apparently in a really bad way: his cerebral palsy was so severe he had to have his legs strapped into the wheelchair to stop him from falling out and he needed an oxygen mask to breathe.
The boy was looking so longingly at the two-day-old piglets as they suckled their mum that the farmer had asked if he would like to hold one. His parents had been worried that their son might not have the strength in his hands to take care of the piglet but the farmer had complete faith in the teenager, plus he’d said he would be standing by if anything were to happen.
It turned out the tiny piglet was in more than capable hands. As soon as he’d been handed into the teenager’s lap, he’d burrowed into the crook of his arm. His teeny eyes had grown heavy and closed as the boy had gently stroked him to sleep. The farmer had eventually had to go about his errands but when he came back an hour later the boy was still stroking the piglet. The teenager’s parents had said they’d never seen their son so happy or so calm.
The story had stayed with me because some part of me had wondered whether the pigs would have the same sort of calming effect on Sam.
I was so desperate for an intervention that the memory of that story started snowballing in my head that morning. By the time we were getting ready to leave, I was pinning all my hopes on the teacup pigs.
It sounds ridiculous, I know, but I needed some kind of
hope.
My sister Sarah was getting the boys in the mood by making oinking noises and singing the nursery rhyme ‘This little piggy . . .’
‘This little piggy is going to help Sam . . .’ I sang in my head.
I told my mum and Sarah that we should meet in the supermarket car park in Totnes, a town which is a fifteen-minute drive to Pennywell, because I needed to nip into the bank on the way to the farm.
I strapped my sons into my car and set off. Will was very excited about the prospect of seeing the pigs, clapping and wriggling around in his car seat. The boys had been to the zoo and the otter farm but they had never seen a pig before, let alone a micro one! I was very curious too; I imagined adorable little things, small enough to hold in the palm of my hand. As we meandered our way through the valley, Sam gazed out of the window, lost in his own world – but at least he was calm.
It was a crisp day towards the end of November in 2008. The last of the autumn leaves that lined the road had turned into brown sludge while the hedgerows were pocketed with holes from where they were losing their foliage. We drove past an orchard where only a few remaining apples clung valiantly to the bare branches.
I still couldn’t get over how different the Devon countryside was to Spain. The approach to the coastal towns of the province of Málaga had been littered with neon flashing road signs, but as we neared the town of Totnes only a simple black-and-white board showing ‘Town centre this way’ and ‘Morrisons supermarket, right’ cluttered up the roadside.
I found a space close to the entrance of Morrisons, switched off the ignition and turned around to look at the boys. Instantly, I noticed that Sam had gone from calm to seriously agitated. He was flicking his hands in front of his face. Poor Will was looking worried; he’d been on the receiving end of Sam’s outbursts too often lately. Will’s eyes darted between Sam and me, as if he was silently pleading for things to stay calm. Dread rolled in the pit of my stomach as I tried to contain the situation.
‘Sam, Mummy just needs to go to the bank and then we will see the pigs,’ I explained.
Sam exploded.
‘Sam is not going to Pennywell Farm!’ he yelled.
Will clasped his hands over his ears in fright.
This can’t be happening – Sam needs to see the pigs, I thought frantically, but I didn’t let my panic show.
‘I thought you wanted to see the pigs?’ I simply said, lightly, trying to mask the anxiety in my voice.
‘Sam is not going to Pennywell Farm!’ he shouted again.
I was particularly concerned because this was the first time I’d heard him refer to himself in the third person. I told myself to keep calm. But Sam’s shouting continued as the boys and I got out of the car and walked down the street towards the bank. He clung on to every lamppost we passed, repeating that he didn’t want to go.
Passers-by were now staring and whispering. I’m sure they were all thinking what a spoilt brat Sam was and how he needed to be disciplined. I felt a horrible mixture of embarrassment and anger; I was furious at the strangers in the street for making me feel like I needed to explain what was wrong with my son.
‘He’s got autism,’ I mouthed at a woman who was pulling her son away from mine. She looked at the ground, clearly afraid to make eye contact with me.
It reminded me of a time in Spain when I’d explained to two ladies why Sam was lining his eye up with the pavement curb.
‘Oh, lovely, does he sing and dance too?’ they had exclaimed, thinking that I had said ‘artista’, which means ‘performer’ in Spanish, rather than ‘autista’, meaning ‘autistic’. I didn’t have time to dwell on my thoughts, though, because Sam was kicking off again.
‘I’m fed up of you, Mummy,’ he raged.
I’d learnt two things for when Sam was losing self-control – firstly I needed to keep him safe, and secondly I shouldn’t show any emotion; as hard as comments like that were to ignore. ‘Don’t react to the meltdown, don’t give him eye contact. Only when he’s calmed down should you address the problem and see what triggered the behaviour,’ Lynda had told me. My son’s teacher had been incredibly supportive of late. Sam’s worsening behaviour was no reflection of the brilliant work she was doing at Manor Primary, it was simply all part of his condition.
‘I’m fed up with you, lady!’ Sam now yelled again, rudely.
I ignored him, praying the meltdown would end so I could take Sam to see the pigs. Then everything will get better, I promised myself, clinging to my new hope.
And then I felt a little hand sneaking into mine. Will might only have been four but he was starting to show the emotional maturity of a child much older. He had picked up the slack for his brother’s lack of, or rather inability to show empathy.
‘I love you, Mummy,’ he now said sweetly, tugging on my hand as if he sensed how close I was to crumbling.
Somehow, we managed to make it to the bank. But as soon as we walked inside, Sam hit the deck. He threw himself on to the grey carpet, thumping his fists against the floor.
‘Sam, get up,’ I hissed.
I felt hot – everyone in the bank was staring at us.
‘Sam, get up now,’ I pleaded.
Being in situations like this was extremely difficult. I felt that if I was constantly excusing Sam’s behaviour by blaming it on his autism, he would start to see autism as something negative. Still just five years old, Sam was too young to understand what autism was, but as he got older and developed more self-awareness he would have to come to terms with his condition. I didn’t want to make that any harder for him than it needed to be.
Parenting when you’re under duress like this is testing, to say the least. I managed to pull Sam up from the floor and he promptly burst into tears.
‘I want to go home,’ he sobbed.
I had to admit defeat. I called time on our bank excursion and headed back to the car park to meet Mum, Sarah and the cousins. Immediately, they could tell something was wrong. Aside from the fact that we had been gone for ages, I could have had ‘stress’ tattooed across my forehead and Sam’s eyes were purple and puffy from crying. Mum looked apprehensive. She clung on to the car door, bracing herself for bad news.
Tom and Dan were none the wiser and rushed out to greet their cousins. They had been apart from my boys for three months so were clearly soaking up every minute they could snatch together. But Sam hung back from the reunion.
I tried one last time to salvage our pig trip.
‘Sam.’ I stressed his name, trying to connect. ‘Tom and Dan want to go to Pennywell Farm with you.’
Sam wasn’t having any of it, though. He started screaming and shouting that ‘Sam is NOT going!’ The other boys edged away as if he was a bomb ready to explode.
I told Mum and Sarah to take Will and go without us. But my mum protested: ‘Jo, love, we are not leaving without you.’
It was a courageous effort on her part, but futile.
‘Go – GO!’ I waved them on.
When Sam was having a meltdown I knew the best place for him was at home because it was where he felt safe – he could go to his room, relax on his chill cushion; it was where he had his model aeroplanes and drawing stuff.
My family reluctantly climbed back into their car. Mum was shaking her head despairingly as they reversed. Will simply stared mournfully through the back window at Sam and me as they drove off.
It was an awful moment waving goodbye to my family, knowing what a wonderful time they would have at the farm – and how much Sam would have loved it if only I could have got him there.
I blamed myself for not being able to make it happen for Sam.
Sam spent the morning drawing. Watching him sat alone at the dining-room table was heartbreaking for me. I had to keep disappearing into the living room to stop myself from welling up in front of him.
Occasionally, he glanced up in my direction. He had a glassy, spaced-out look in his eyes which I hadn’t seen since he’d first started to regress three and
a half years ago in Spain. It was frightening. The clock in the living room ticked loudly, making me more and more aware of the hours that Sam was spending isolated at home.
Suddenly, the front door burst open and Tom, Dan and Will came running into the kitchen. They were excited, laughing and happy, full of wonderful stories about the pigs. All three of them had held the baby piglets. They were talking loudly over each other as they recounted how tiny they were; how there were black and white ones, pink ones and ginger ones. How the piglets ran up to the boys when they stood in the pen. How they had tried to eat Will’s shoelaces, much like a puppy would.
Sarah and Mum were clearly affected by the magic of these micro pigs too as they were beaming from ear to ear. Mum had a list of facts ready to reel off – the miniature pigs could be house-trained just like dogs. Pigs, she enthused, are the third smartest animals after dolphins and chimpanzees, so you can even teach them tricks. Contrary to belief, pigs are extremely clean. They have a very good sense of smell. They feel emotions and know the difference between love, hate and forgiveness . . .
I looked back at Sam as my mum carried on talking. He was still alone at the table while his brother and cousins laughed and chased each other around the house. I was overwhelmed with a sadness so great I could feel a knot of pain in my stomach – not just because Sam was alone but because he didn’t seem to mind his isolation. But I did. I minded very much. I wanted him to have a friend, just one friend that he could call his own.
I’d been hoping that the micro pigs would be the key to helping him find that friendship at last, but I knew all too well that once Sam had an idea in his head – such as that he didn’t want to go to see the pigs – it would take a marathon effort to break those convictions. I had to resign myself to the fact that Sam would probably never meet these healing micro pigs himself.
As soon as everyone had gone to bed, I picked up the phone and called Darren, just needing to hear his voice after such a disappointing, heart-rending day.
‘Sam’s never going to be able to live a normal life like his brother,’ I said dully. ‘What more can I do?’
