by Jo Bailey
As we approached his final months at Manor Primary, I felt confident he was ready to make the leap to secondary school. I told myself it would be OK, that it would all work out.
Sadly, I couldn’t have been more wrong.
The regression wasn’t obvious at first. It started in June with small things, like Sam getting stroppy with his TA, Mrs Short. He complained that he hated her following him around to every lesson.
‘Why does that woman have to be with me all the time? It’s like I’m her husband or something!’ he said bluntly.
He was also being rude to us: he’d arrive home and unleash a tirade of abuse. I didn’t know he even knew swear words, but he certainly did. He started kicking doors and walls.
Next, Sam became afraid of the dark. He insisted on having the fairy lights around his bed on all night long and he wanted a torch by his bedside as a safety measure. Perhaps as a consequence of this new fear, he started sleeping in my bed, too. Many nights, as I was getting ready to go to sleep, I would hear his bedroom door creak open and then the quick succession of footsteps as he sprinted along the corridor as fast as his legs would take him. He would come crashing into my room and clamber into my bed. I’d then have a real job trying to get him to sleep as he was so agitated. It was exhausting for us both.
It was particularly distressing to watch his decline as only a couple of months earlier he had been that confident boy singing his heart out on stage. It was frightening because I began to feel I was reliving the horror of Spain all over again, when my little boy had started disappearing before my eyes.
The only advantage I had this time around was an understanding – I knew what was happening, and I could work out what was triggering him. It was the move to secondary school, of course, for Sam would be moving on from Manor Primary that September. Sam hated change at the best of times, let alone such a significant leap into the unknown.
I tried to keep calm and asked Mrs Short for help; Lynda Russell had by this time retired. Mrs Short advised that we did all we could to prepare Sam for his new school – South Dartmoor Community College. We’d chosen the school because it would allow Sam to stay in mainstream classes but there was also a CAIRB on site, on which Sam would be offered a place.
So that’s what we did – I showed him pictures, Mrs Short made up storybooks, I took him back and forth to the uniform shop to give him an idea of what he would be wearing. But it didn’t seem to help.
As we approached the last couple of weeks of term at primary school, Sam’s new habit of sleeping in my bed was happening every night. It was exhausting for Darren as well, who was then home from the rigs, as Sam was hardly a little child any more who could cuddle neatly between us; he was a tall, lanky eleven-year-old who took up a lot of space. Sometimes one of us would have to creep out in the middle of the night to the spare room just to get some rest.
We pinned all our hopes on the week that had been earmarked to show Sam around South Dartmoor. Most children only spend a day, if that, looking around their new school; we spent a whole week showing Sam what was in store. Every morning either Mrs Short or Mrs Scull from Manor Primary took Sam to South Dartmoor. They started off by showing him the classrooms, the gym, the playing fields and the art room, where he’d be able to continue doing his wonderful drawings. He was slowly introduced to what day-to-day life would be like, and to the TAs who would help him at secondary school. By the end of the week, he was attending both morning and afternoon lessons, without either Mrs Short or Mrs Scull. So it went surprisingly well, despite all the anxiety he’d been displaying. But, as it had been so many times before, it proved to be just the calm before the storm.
Gradually, Sam got worse and worse. He refused to be alone – he wouldn’t even go and see Chester by himself. Darren, Will or I would have to chaperone him into the garden. He refused to go upstairs – he would stand by the door, trembling, waiting for someone to take him. He wouldn’t even go to the bathroom alone. He now wanted not just his fairy lights on, but also the main bedroom lights, his side lamp and his torch – he needed to be surrounded by light to feel safe. He was afraid and anxious.
‘Mum, I can hear the animals.’ He would clamp his hands over his ears as I tried to get him to go to sleep in his own bed. I knew his acute sense of hearing had been a problem at times, and he’d mentioned the noises of the foxes and the owls before, but this was different. In his mind, the animals had morphed into monsters and he was terrified they were coming to get him.
I could sympathise with how Sam might feel as the hooting of the owls could sound like ghosts calling to one another as their haunting voices echoed across the valley. So I made up a story about the owls – how they were a family having a chat at night, just like we did.
I tried to remind him of his drawing of the pink cottage: ‘This is your home, this is where you are safe and happy.’ I kept reiterating the word ‘safe’.
But my words fell on deaf ears. Sam would burst into tears and mutter nonsensical words under his breath. He would then stop and beg me: ‘Please don’t leave me, Mum.’ What could I say to that? I would take his hand and lead him into my bedroom for another night.
I had to stay strong and keep saying the right things to keep Sam calm, but it was hard not to panic. How bad was this going to get?
And then things went from bad to worse one day when we took a short car ride into town. Mum was in the front with me; the boys were in the back. As we drove the familiar route along the country lanes to the supermarket in Totnes, Sam started muttering. He was speaking under his breath so I couldn’t decipher the words. He then suddenly blurted out very clearly: ‘I can see them.’
Mum and I locked eyes. She gave me that look, that same awful worried look I’d seen when things were at their worst with Sam in Spain.
‘Sam, can you actually see anything?’ I asked, trying to make sense of his thoughts.
Sam simply carried on murmuring again, and then he suddenly became very lucid. ‘I can see black figures walking down the street,’ he said, flickering his fingers in front of his eyes.
For a moment, Mum and I were shocked into silence. As soon as we’d parked up and got out of the car, Mum pulled me aside.
‘My God, do you think he’s seeing dead people?’ Mum whispered to me, not wanting Sam to hear.
‘No!’ I didn’t want to accept that was what he was imagining. ‘Maybe he’s got something wrong with his eyes,’ I went on. ‘Maybe he’s got some black spots blocking his vision – floaters, I think they’re called.’
I was determined to get this checked out. I hadn’t come this far with Sam, only to see him regress so dramatically. Immediately, I booked Sam in to see an optician in town.
I had a little word with the optician before I brought Sam into the consultation room, just to explain what had been going on. Although I didn’t want there to be something physically wrong with Sam, in a way I hoped there was, as that would have been better than the alternative – that my boy was imagining he could see the dead, or at least ghostly figures that were invisible to everyone else.
The optician was very caring. He took his time over Sam, making him feel special by explaining everything he was doing. He then handed me a folded piece of paper on which was written:
20/20 vision. Must be anxiety.
He had written it down as he didn’t want Sam to hear his diagnosis and be upset by the news. Sam was old enough to understand what anxiety was. He was old enough, too, to understand he had autism – which we then discovered was what was really at the heart of the problem.
Throughout Sam’s life, I had always made a point of making him understand that everyone in the world is different and told him not to worry about the fact that Will could do things he couldn’t. I tried to educate Sam by telling him that while his autism did mean he struggled with certain things, that struggle in itself was completely normal, for we all struggled with different things (‘I struggle with driving and Daddy struggles with eating seafood,’ I woul
d tell him). I told him over and over that autism was just a wonderful part of who he was and should be celebrated, for it allowed him to do some fantastic things, such as his drawing, which neurotypical people couldn’t. And I told him never to allow his autism to define him because, at the end of the day, it was only a small part of who he was. Ultimately, he was Sam – not autistic Sam, or flapping Sam, but Sam who could draw brilliantly and liked pigs and happened to have autism. Autism was just a characteristic, I said, like his dark-brown hair or his passion for Ben 10.
As a young child, he probably only took about 5 per cent of all that in. He used to say proudly, ‘I have autism,’ not really knowing what it meant.
But the older Sam grew and the more he mixed with other children, the more he had become aware of his limitations and that he was actually ‘different’. Now, as Sam geared up to change schools, he was seeing those differences in a negative light. His perspective of his autism was getting more skewed by the day.
Darren was back on the rigs when Sam’s state of mind suddenly took a nose dive. I walked into his bedroom one morning to find him sobbing. He was muttering and flickering his fingers in front of his eyes, which was a sign of serious anxiety. I could feel the stress exuding from him.
‘Sam, what on earth is the matter?’ I asked, scooping him into my arms.
Sam just muttered words under his breath, over and over, so quietly I couldn’t make them out. He did that when he was feeling distraught. Then he spoke clearly again – but the words weren’t at all what I wanted to hear.
‘Leave me alone!’ He hid his face under his hands, but not before I saw his bottom lip was quivering and his face was drenched in tears. ‘I hate having autism. I want to be like everyone else. I wish I was dead!’
Hearing Sam say that was the worst moment of my life. I’d never heard him say that he hated himself before, nor that he wished he was dead. It absolutely broke my heart.
After he shouted out the words, he sobbed – and it was a sob that came right from his belly, from his very soul. His whole body was shaking with sadness.
I gently rubbed his back as he buried his face in the duvet. It was clear that all he wanted was to make himself disappear. I took a deep breath. After years of dealing with distressing situations like this, I was used to putting my emotions to one side and giving Sam the response he needed to hear. Even though his words had shocked me, I knew how to respond and wasted no time in reassuring my devastated little boy.
‘No, Sam, autism isn’t bad, it just means you see the world differently,’ I told him softly, rubbing his back. ‘We are all different. I’m different to you; Daddy’s different to Will. Autism is a good thing – because wouldn’t it be boring if we were all the same?’ I felt a lump rising in my throat as I spoke. And my words didn’t have the desired effect: Sam crossed his arms over his face, sobbing and sobbing.
I kept going, doing my best to bring him back to me.
‘There are so many great things about autism! Look how wonderful your hearing is, and your eyesight, which makes you brilliant at drawing. We can’t draw like you, and that’s because you can see things in so much more detail than we can.’
‘Will doesn’t sleep with the lights on.’ Sam kept on criticising himself.
‘Sam, that’s OK. We’re all different and we all have different needs, each and every one of us.’
I kept rubbing his back. I kept trying to show him how much I loved him.
‘Mummy, I hate myself!’
‘But, sweetie, what is it about the autism that you don’t like, when it’s given you so many gifts?’
Sam looked up at me, his eyes red and puffy from all the tears.
‘People are going to laugh at me in my new school,’ he cried. ‘My autism makes me flap.’
‘It doesn’t matter if you flap,’ I told him. ‘And if people laugh at you because you flap, then that doesn’t make them very nice people, so why worry about them?
‘But if you don’t want to flap, we can work out ways of helping you to manage it better.’
There was no point in telling him how far he had come with his self-regulating, because he couldn’t see it. I needed to reassure him he would be OK, that there was a future. As Sam got older I’d be able to explain to him why he felt the need to flap, as well as all the other terms I knew, but, for now, I told him we would simply work on ways to manage his flapping.
‘We’ll learn to control it,’ I promised, kissing his tear-soaked face.
Eventually, he calmed down enough that I could get him to school that morning for his last day of term; his last-ever day at Manor Primary.
As soon as I got home from dropping him off, I called Darren. I didn’t know what time it was for him – he was now stationed in the Gulf of Mexico – but I was so concerned about Sam that I just picked up the phone and dialled his number.
I was redirected through his office in Scotland. Every second I was on hold, my heart was beating louder. I needed to hear his voice more than ever.
‘Is everything OK?’ Darren was suddenly on the line.
‘No, it’s Sam,’ I told him, my voice cracking as I said the words. I explained everything that had happened and told him how incredibly distraught Sam had been.
‘I don’t know what to do!’ I cried out. ‘I’m losing him again.’
But Darren replied calmly: ‘We’ll get him through this; it’s going to be OK.’
Darren told me to ring the mental-health team. He said we couldn’t take any chances if Sam was saying things like he wished he was dead. My boy had already shown us through the years that he had no compunction about hurting himself physically.
We had been assigned a social worker through the NHS, through whom I could access this service for Sam. Strengthened by Darren’s sensible advice, I wasted no time in picking up the phone and calling her. It was the first time I’d really needed her help.
‘Something terribly harrowing happened to me this morning,’ I told Sam’s social worker.
I recounted everything Sam had said to me, trying my hardest to control my emotion. I was desperately worried about him. She told me to sit tight, that she was going to refer us for further assistance from the mental-health team. I knew it was really difficult to get a referral so I felt incredibly lucky, and somehow both reassured and anxious about the fact they were taking it so seriously. Several days later, a nurse from the mental-health team and a psychiatrist came to the house to assess Sam.
Sam was in the garden, running up and down the stretch of lawn that he’d worn down from all his flapping. I watched him for a moment, his anxiety obvious in every pounding step, and then called him over.
‘Sam, come and say hello.’
I didn’t tell him that one of his visitors was a doctor as I didn’t want to make him even more stressed than he already was.
Unusually, Sam didn’t answer me. His eyes were on the ground and he was muttering to himself. He clearly didn’t want to come over.
‘I won’t be a moment,’ I excused myself. I walked over to where Sam was flapping and crouched down on one knee. ‘Sweetie, please come and say hello to our guests.’
Sam wouldn’t look me in the eye. But he would let me lead him, so I gently took his hand in mine and brought him inside.
‘Would you like a drink?’ I asked them all, gesturing to the nurse and psychiatrist to congregate in the kitchen. I thought Sam would be more likely to engage with the professionals if he could see it was an informal gathering.
‘Hello, Sam,’ the doctor said in a very gentle voice.
Sam wouldn’t respond. He continued to flicker and weave his fingers in front of his eyes.
My own anxiety levels were rising as I watched the scene unfold. For how would the doctor ever be able to help Sam if he wouldn’t communicate? How could she fix him if my son wouldn’t tell her what was wrong?
‘Sam, say hello.’ I encouraged him again to engage.
Nothing.
I looked at the d
octor and nurse in despair. I wanted to scream at them to do something, to help us – but I needed to stay calm for Sam’s sake.
Suddenly, a solution dawned on me. The answer had been staring me in the face all along. In fact, the answer was sitting out in our back garden!
Chester.
Chester had been the key to helping Sam build his confidence, to making him laugh, to easing all the symptoms of his autism. Chester had helped Sam find his voice before . . . so maybe he could help my son now?
I took Sam by his shoulders and said, ‘Sam, why don’t you show Chester to our visitors?’
Sam looked up at me and smiled. My heart leapt: his eyes were suddenly alive again. I explained to the nurse and doctor who Chester was and, once they’d got over their initial surprise that we had a pet pig, they gamely rose from their chairs and prepared to follow Sam out into the garden. Sam started to flap his hands with excitement as he led them through the back door, across the terrace and towards Chester’s pen. Chester heard the footsteps and started grunting furiously in excitement.
I didn’t follow them into the garden. I knew how important it was to give Sam his space. Instead, I ran up to his bedroom, so I could watch them out of the window. I was praying that Sam would start talking, that he would open up to the psychiatrist. As his mother, there was only so much I could do – I needed the help of professionals now.
Peering through the window, I observed Chester rushing out of his pig ark, wagging his tail. I couldn’t hear any of the noises – but it was amusing to watch the reactions of the two women as they both took a step back! I then watched with delight as Sam started pointing at Chester and interacting with the professionals. A huge wave of relief washed over me. Things were finally moving in the right direction.
Twenty minutes later, they all came back into the house and I ran down the stairs. I hovered in the background, busying myself in the kitchen as they occupied the living room. I was trying to listen in to what was going on, but I couldn’t hear everything that was being said clearly. I could tell that Sam was speaking and I heard him say: ‘Chester is my pet pig. He used to live in the house with us before he got too big.’
