by Jo Bailey
I don’t have a year! I wanted to scream. What if after twelve months Mariángeles came back and said, ‘He’s not autistic’? What if what was wrong with my son was what I’d feared at first, something life-threatening – like a brain tumour?
I left her clinic feeling anxious and afraid. As soon as I was home I picked up the phone and called my mum.
‘Mum, I can’t sit back and wait – because that’s a year I could lose curing Sam from something else!’
Mum told me to stay calm. She told me we were going to work through this together, that no price was too much to help her grandson. I don’t know what I would have done without my mum.
Mariángeles was going to work with Sam every week for the next year. From that moment on, I was on two journeys: the diagnostic one with Mariángeles, and my own path searching for a cure for Sam – maybe a cure for whatever disease might be plaguing him, or simply some other way to make him better. I would not rest until I’d found the answer. Every night after the boys had gone to bed I researched for hours online and ordered books for further reading. I was absolutely determined to be as informed as I possibly could be in order to help Sam.
The first thing I had to do was rule out if Sam had a brain tumour, which involved him having an MRI scan. Jaime came with us to the hospital in Los Alamos, near Torremolinos. The MRI machine was tucked away in the basement. As the three of us headed down into the gloom, it was like walking into a cave – and in the middle of the room was a huge machine that was making an ear-splitting noise.
In order to perform the scan, the doctors needed to encase Sam inside this loud, coffin-like machine for five minutes – but he had other ideas. Sam, who had been lying quietly in my arms up until this point, now started thrashing wildly, thumping his fists into my chest.
‘Jaime, help!’ I cried out. I couldn’t hold on to him.
The MRI scanner boomed as the electromagnet fired up.
Sam was crying and thrashing and hitting at anything he could reach. Every time Jaime carried him over to the MRI machine, he’d become increasingly distressed.
Eventually, the doctor stepped in.
‘This isn’t going to work. Take him outside and we’ll turn the machine off and try again,’ he instructed.
We made several attempts to go back into the room, to try and get Sam to lie down on the bed, but every time he got close to the machine, he’d become distraught all over again. It was tearing me apart watching him suffer. How awful this must be for him.
‘We are going to have to give him a general anaesthetic,’ the doctor directed, asking for our help to keep him pinned down while he administered the drugs.
He sedated Sam but, twenty minutes later, my son was still wide awake. Part of me now wanted to abort the whole thing because my poor baby was so distressed, but the other half of me couldn’t give up. I needed to know why he was behaving like this.
‘I’ve got an idea: let’s get in the car,’ I told Jaime.
There was a road outside, lined with palm trees, which led to the seafront: a two-mile stretch of sandy beach. I thought if we drove up and down the sea front, over and over, the motion would rock Sam off to sleep.
I sat in the backseat cradling my son’s head on my lap. But poor Sam couldn’t stomach the anaesthetic and was throwing up all over me.
The atmosphere in the car had become intense. Sam was unwell, we were becoming increasingly agitated and I was feeling so guilty for putting my baby through all this.
‘I love you,’ I whispered, stroking Sam’s cheek, trying to calm him.
Eventually, he did nod off. I carried his limp body back down into the treatment room and lay him down on the scanner bed. Thank God the anaesthetic had taken hold: he didn’t wake up even through the noise of the MRI machine.
They told us the results straight away. It was one of the few moments I felt reconnected to Jaime as we both braced ourselves for the worst. I really wanted answers, and unless I had the answers I couldn’t help Sam – but waiting to hear if my son had a tumour was horrific. I swallowed the dread that was inching up my throat.
‘Normal,’ the doctor announced, clipping the pictures of my son’s brain on to the lightbox.
I closed my eyes with relief.
The peace didn’t last for long, though. As soon as we left the hospital, I was thinking about what I needed to do next. Is Sam deaf? was my first thought once we knew he didn’t have a brain tumour. Maybe the reason Sam won’t answer me is because he can’t hear what I’m saying?
I booked Sam in to see an otolaryngologist: an ear specialist. My baby was put under anaesthetic again; he was enclosed in another dark, coffin-like box. Electrodes were placed all over his head and in his ears. It was horrible for him, but we needed to know.
‘Normal,’ the doctor said afterwards.
Relief.
I felt like I was riding an emotional roller-coaster, it was such a strange and confusing mixture of feelings that I was experiencing at that time. I was happy that the results of all the tests were coming back negative, but I was also anxious because with each clear result I was running out of possibilities as to what might be wrong with Sam. He didn’t have a brain tumour. He wasn’t deaf. So what was wrong with him? We still had over half a year to wait for Mariángeles’s official diagnosis.
Next, I started trying things like blood tests for gluten allergies and adding omega-3 fish oils to Sam’s milk to aid his brain development.
Negative; nothing worked.
I remembered that Sam had never crawled, just gone straight to walking. Perhaps that meant part of his brain was undeveloped? I started doing ‘brain gym’ exercises with him, encouraging him to join me in playing indoor football on all fours, hoping to strengthen his brain so that this regression would stop.
I read a book that said certain foods and flavourings could bring out morphine-like substances in the brain. If Sam was allergic to these substances, could that explain why he was spaced out all the time?
I turned our cupboards upside down, drawing a big black cross on any tin or food packet that contained casein, monosodium glutamate or aspartame. Our kitchen looked like a biological hazard zone by the end of the day – you’d open the cupboard to find a sea of black crosses. With these restrictions in place, there was very little Sam could eat but somehow I concocted a two-week menu for the whole family; I thought it would only be fair to Sam if we all embarked on the new regime with him, because I thought it would be unfair if, for example, Will had a biscuit when Sam couldn’t. So we all ate the same food: healthy, raw things like tuna and gluten-free pasta, fruit and vegetables.
I noticed a slight change in Sam’s behaviour – he seemed a bit more ‘with it’ after a few weeks – but I wasn’t sure if it was just my imagination because I knew I was desperate to see a positive change in him.
And each night, after Sam had gone to bed, I read every single bit of literature on autism that I could – to prepare myself in case Mariángeles came back with a positive diagnosis.
I was a woman possessed. My resolve was driving me forward, but it wasn’t necessarily strength that drove me on. For there was a part of me that was afraid to stop, for fear the loss of momentum would bring me to a grinding halt and I wouldn’t be able to pick myself back up again.
I needed to keep going. I needed to fix Sam.
Sadly, I couldn’t fix my marriage. As the year went on, we spoke less frequently on the phone; maybe once a week, if that. I only rang Jaime if I had a problem.
Despite feeling desperately unhappy, I still wanted to make my marriage work. We had a very challenging boy on our hands and I was terrified I wouldn’t be able to cope without my husband, even though him working away during the week meant that in many ways I was already doing that. In addition, I’d never given up on anything in my life and I wasn’t about to start now. I was fighting for Sam and I was fighting for my marriage.
But by the September of 2006, it had become clear that there was very little lef
t for us to fight for.
Perhaps if things had been different I would have spoken up more, tried to figure out exactly what the cracks were and how to mend them, but I felt so ground down by the worry about Sam that I’d lost my voice.
It was October 2006 when things finally came to a head. The boys were in bed, and Jaime and I were in the living room, sat on the low-slung green sofa that I’d bought in Habitat in the 1980s. I loved it so much that I’d gone to the trouble of shipping it out to Spain. But not even its familiarity could offer me any comfort now.
We talked things through, but there comes a point, no matter how hard you battle or how hard you try and kid yourself, when a realisation hits you. And sat there, together on the sofa but a million miles apart, I knew our marriage was over. And Jaime knew it too.
He stood up, running his hands over his face and through his jet-black hair.
He said that he would be the one to leave, to give us a clean break.
It was over.
And, seven weeks after he left, in December 2006, my year-long quest to find answers for Sam was over too. Just before Sam’s fourth birthday, Mariángeles called us back to her office and there, with Sam on my lap and my mother by my side, she told me the news I’d been dreading since the day I first met her.
It was official, she told me. My little boy had autism.
‘Classic’ autism.
Our lives would never be the same again.
CHAPTER THREE
Castaway
I OPENED THE front door and walked into the kitchen – but soon realised Sam hadn’t followed me in. I turned around to see him still hovering in the doorway, standing awkwardly in a puddle of his own urine.
‘Oh, Sam.’ My heart went out to him. This was the third day in a row that he’d wet himself after I had picked him up from school.
He was staring at the ground, looking sad and helpless. I didn’t draw attention to his accident; it wasn’t his fault, the poor thing. I just took his hand and led him upstairs where I could change him into some fresh clothes.
I was increasingly concerned about Sam and school. Though Mariángeles’s diagnosis had given me the answer I’d long been looking for as to what was wrong with Sam, it soon became clear that it didn’t make much difference on a day-to-day level to have that ‘label’ for him, mostly because the primary school he’d been going to for the past five months wasn’t making any time or allowances for his condition. They didn’t seem to have an understanding of autism, which perhaps wasn’t that surprising. When I’d been sent away from the clinic that had diagnosed Sam, I felt I’d been given very little explanation about what autism was and how to cope with it. I could hardly expect teachers who didn’t specialise in the condition to know much more than I did.
‘Show him language,’ Mariángeles had advised. So I’d booked Sam to see a speech and language therapist twice a week. But it seemed the rest was up to me to figure out – and I was like a blind person, feeling my way in the dark for answers. It was an incredibly frustrating and lonely mission.
Thanks to all my reading, I now knew, above all, that Sam needed structure and predictability. If Sam had a regular and consistent routine and knew what was coming next, he was much less likely to become anxious and upset. The way to help Sam achieve this knowledge was to map out his day for him in a storyboard type of way. Mariángeles had given me some picture cards with Velcro backs that I could arrange in a sequence. For school it would look something like this:
Reading. Fruit time. Painting. Lunchtime.
Toys. Home time.
The aim being for Sam to visualise his day, because if he could predict how it would pan out, he wouldn’t be so worried about going to school.
But his teacher did not use the cards. ‘He doesn’t need them,’ she said airily, brushing away my concerns.
Moreover, Sam had no continuity in his school life. I had made a friend in one of the dinner ladies, and she used to tell me how Sam was being seated on a different chair every lunchtime.
The fallout of all this was on my porch – Sam wetting himself. He’d spend the day bottling up his anxiety and his fears so that when he finally got home, somewhere safe, he couldn’t control his muscles for a second longer and had to let it all out. Even though he couldn’t speak to tell me, I knew Sam must have felt as awful wetting himself as I did watching him and not being able to help.
Another big problem at school was the noise. Autistic brains have a much higher number of nerve cells than ‘neurotypical’ brains. This means that autistic people can suffer from sensory overloads – where noise, light, tastes or colours become overwhelming, and painfully so. It was impossible to predict what might trigger a sensory overload or how much it would hurt Sam. With hindsight, it was no wonder Sam had had a meltdown when he’d heard the banging of the MRI machine – it must have sounded like a shotgun in his ear, and we’d been trying to put him inside the contraption that was making all the racket!
But the screaming and shouting of the loud Spanish children was just as deafening for Sam and became impossible for him to cope with. The noise of the dining hall was horrendous. The teachers reported how Sam spent all his time in class with his hands clamped over his ears and his head on the desk.
I was back and forth to the school constantly, dealing with phone calls from frustrated teachers.
‘Sam is trying to block out the noise,’ I told them, as I tried to explain why he was pretending to sleep through his lessons.
But my best medical summarising didn’t help – they couldn’t understand Sam’s behaviour. It wasn’t out of malice, it was just a small provincial school and they had no experience of autism.
Every morning I’d drop Will off at the nursery and then wind my way up to the top of the mountain with Sam, to where the school overlooked the bullring and our village of Benalmádena Pueblo. The location was nothing short of beautiful, with its sea view and mountain backdrop, only I was too preoccupied to take it all in.
There was a main staircase running through the centre of the school, from which branched lots of classrooms. On the ground floor was the dining hall, which opened out on to the playground. To the right of the dining hall was a big room where I dropped Sam off in the morning. All 300-odd children would be in there with the dinner ladies, screaming and shouting, as kids do. Every morning, Sam would look so lost, so withdrawn and so obviously frightened and overwhelmed by everything that was going on around him. His eyes were big and watery. I hated walking away and leaving him there.
I didn’t know what else to do, though. I presumed I’d be prosecuted if I didn’t take him to school. Moving him to a new school didn’t seem to be an option, as new routines could do more harm than good. The only consolation, and the main reason I didn’t pull Sam out, was that his cousins, Tom and Dan, also went there. Tom was five and Dan four; Dan was in the same year as Sam but not in the same class, which was such a shame as I think it would really have helped Sam to see a familiar face in his lessons.
I would have picked Sam up at lunchtimes to feed him at home – so that he could avoid the dining hall – if I hadn’t had to work, but now I was a single mum I had assumed the economic responsibility of running the household. My sister’s ex-husband had stepped in to help by giving me a new job in sales at his property development company. It had eased the financial worry, but I was barely holding it together. After all, I was trying to come to terms with the fact that my husband and I had split up and that one of my sons had special needs. It was a fraught time, to say the least.
I experienced so many different emotions; among them shame. What sort of monster must I be for my husband to leave me? Though Jaime still saw the children every other weekend, I blamed myself for us not making it work as a family. I felt ugly and unlovable.
My mum and sister tried to reassure me, telling me that I was beautiful, but their pep talks were just words to me and I couldn’t take them in. Every time I looked in the mirror I saw an overweight ‘thing’. I
hated my red hair, I hated my pale freckly skin; I wished I could be bronzed and slim like all the beautiful Spanish women walking along the promenade. I wanted to be anyone but me.
I felt so lonely that I even turned to virtual strangers for help.
One evening I was sitting on the veranda, staring blankly at the moonlight on the pool. I was alone – the boys were at my sister’s house and Mum was at the British Legion club. I was getting more and more depressed that I would be on my own for ever. It wasn’t even for me that I felt down; I desperately wanted my boys to have a father figure in their life. I’d grown up without a dad and I didn’t want Sam and Will to have to do the same.
As my thoughts swirled round and round in my head, my gut twisted into an unbearable knot and I felt an immediate and intense need to escape from the fears that were closing in on me.
I knocked on my neighbour’s door.
‘Jo!’ Leslie exclaimed in surprise as she opened the door to my teary face.
‘I’m sorry, I just didn’t know who else to turn to,’ I said weakly, my voice catching in my throat.
Leslie was an English lady in her fifties. She’d been married to a Spaniard, Diego, for years. Of course, she’d heard that Jaime and I had separated; everyone in the street had. Being a close-knit community, the news had spread like wild fire. She invited me in and my flip-flops crunched across the dry Mediterranean grass of her garden as she led me to a table and chairs which looked out on to the ocean.
‘Have this,’ she said, handing me a very large glass of wine.
Leslie had a pretty, sweet face. Softly spoken, she was a motherly figure who had grown-up children of her own. Seeing the sympathy in her expression, I couldn’t hold the words in a second longer.
‘I’m going to be alone for ever,’ I blurted out. ‘I’m thirty-eight; no one is going to want to be with me.’