by Jo Bailey
Previously, Sam had been able to feed himself and to point to the things he wanted to eat. But, now, as the ‘shutdown’ accelerated, he couldn’t even do that any more. If he wanted some food, he would take my hand and lead me to the fridge to show me he was hungry, but he seemed to have lost the power of choice, the power of communication.
Sam lost all interest in his brother. He didn’t want to play with him or look at him. Will was as good as invisible to Sam.
It made my heart ache. Only weeks before, the boys had been messing around in the sandpit together – Sam sprinkling sand into Will’s hair and me getting cross because Will’s baby hair was so fine that I could never get the stuff out. How I longed to have those moments back again now. I kept a picture of Sam kissing and cuddling Will in a frame by my bedside but, these days, I didn’t even recognise the boy in the photograph.
Perhaps the most distressing thing of all was that Sam stopped speaking. He had been able to say about forty words in both Spanish and English. He had sung and clapped along to nursery rhymes. Now, he could barely utter a single word.
‘Sam, would you like a yoghurt?’
He stared into space as he twizzled the spoon around in his mouth.
‘Yoghurt,’ he repeated carefully: the last word of the sentence. That was the most I’d get out of him – my last word was his only word. He couldn’t even say ‘Mummy’ any more. It was heartbreaking. I cuddled him, I sang to him, but nothing I did could revive him.
The one thing he hadn’t lost was his ability to sleep – though that was probably because he was unresponsive most of the time. While Sam was sleeping, I, on the other hand, would be lying wide awake two rooms away, terrified to fall asleep for fear of how I’d find Sam in the morning.
How much further was he going to regress? Would he soon lose the ability to walk as well as talk? Was he going to end up in a wheelchair or even on a life-support machine? I thought a disability like cerebral palsy or Parkinson’s disease was taking him over, destroying his body and his mind.
I couldn’t seem to get through to my husband about how serious things had become. On his visits home, Jaime treated Sam as though nothing had changed.
Jaime would ask Sam to eat up his food, as he always had done, and something Sam had done so easily just a few weeks before. But Sam simply stared down at the table, blankly, as though his dad hadn’t spoken.
‘He won’t eat; he won’t do anything any more.’ I couldn’t help what happened next. I rushed out of the room so Sam didn’t see me upset, and promptly burst into tears.
It’s almost impossible to put into words how desperate I felt. Sam’s fate ate away at me and kept me up at night as I wracked my brains for a way to bring him back to me. I worried constantly about where this downward spiral would end. Despite my attempts to stay positive for Sam in the daytime, in the wee small hours I couldn’t help but imagine my poor boy eventually ending up on a psychiatric ward, his eyes glazed over as he stared into space.
And, scarily, it wasn’t even that much of an exaggeration or a leap for my frightened mind to make. For just three weeks after I’d first seen the doctor, my son had regressed beyond all recognition.
And I had reached breaking point.
Things came to a head one sunny day. The Spanish heat that I’d once loved now seemed cloying and I hadn’t been out in it, enjoying its warmth. Instead, I’d spent the morning trawling the internet, doing as much research as I could to try to figure out what was wrong with Sam. Pausing for a minute as I tapped away at my computer, I turned to look at my boy who was lying, completely withdrawn, on the sofa. He’d been in the same position for hours, just stroking his earlobe, his eyes locked on a single spot on the rug.
I stopped what I was doing. Though none of my previous efforts had borne fruit, I went over to him to see if I could lift him out of his trance. I wanted to shake whatever it was that had taken hold of my son out of him, but you wouldn’t have known it from my touch. Instead, I scooped him into my arms and gently rocked him back and forth.
‘You’re beautiful,’ I sang to him; James Blunt’s song. And Sam was beautiful. I loved him so much. I closed my eyes and tried to remember Sam as he once had been. As I rocked him and sang to him, my mind drifted back to one of my happiest memories . . .
We’d just moved into the house. I was heavily pregnant with Will, and Sam was eighteen months old. He was sitting at the head of the kitchen table, raised up on a pile of cushions so that he could see the stack of picture cards in front of him. Jaime had turned the top card over and placed it in front of Sam. Our son had paused for a moment as he digested the drawing. With a cheeky, proud smile, he’d turned to me and said, ‘Cat,’ and then looked at Jaime and announced: ‘Gato!’ We’d cheered and clapped and Sam had beamed as he’d patted his little chubby hands together, cleverly mimicking us. Then on we went to the next card. There were at least twenty pictures and Sam could say them all in both Spanish and English. I know every mum thinks her child is a genius, but we were genuinely convinced he was.
Now look at him, I thought, as I stared down at his sad little face, his body limp and unresponsive in my arms.
My thoughts were broken by the sound of something crashing to the ground. I gently lay Sam back down on the sofa and ran into the kitchen – to find that Will had pulled everything out of the cupboard and tipped the box of dishwasher tablets all across the tiled floor.
‘Will,’ I sighed, dropping to my knees to clear up the mess. Will was almost crawling and he had become very good at shuffling himself around on one knee, using his back leg as a rudder to steer.
Just as I had finished putting everything back, I turned around to find that Will had pulled out every baby wipe from a packet and strewn them across the floor. He was just as dextrous with his hands as he was at getting around.
I tidied up once again and returned to Sam in the living room, but what seemed like only two seconds later Will was back in the kitchen, pulling out the contents of the saucepan cupboard. The irony was not lost on me: I had one little boy who was very much present and letting me know it, and another who was disappearing before me on the sofa. The contrast was too much and I felt a sob rising in my chest. I was mentally, physically and emotionally exhausted. I just wanted to run away and hide.
I made sure the boys were safe – and Will distracted with a toy – and then took myself off to our study, a cosy little room at the bottom of the house far away from the heat. It was my home from home, a little piece of England, for moments such as these when everything got too much. It had a thick blue carpet, bookcases packed floor to ceiling with my favourite reads and family photos all over the walls. It even contained my grandmother’s old fireplace, which we’d had shipped over from the UK. It smelt comforting – old and musty, like a library. I felt safe and secure there and the feel of the soft carpet under my bare feet had never felt so soothing. The room had a desk and a swivel chair, which I now collapsed into.
Trying not to cry, I picked up the phone and rang my mum. Who else do you turn to when you’ve nowhere left to go?
‘I just don’t know what to do, I just don’t know what to do,’ I kept saying, over and over. What was happening to Sam seemed like a bad dream, but I couldn’t wake up. This was all too real, and at that moment it felt all too much.
‘Oh love, I wish I knew what to say to you,’ Mum replied, feeling helpless.
I wanted to say more but the words were caught in my throat.
‘I’m so sorry,’ Mum carried on. I could hear her voice cracking now too. She was really upset and worried as well, for she adored both my boys. I was losing my son, and Mum was losing her grandson. But neither of us was prepared to let that happen.
‘Listen to me, Jo,’ Mum went on now. ‘Whatever it costs, we’ll get him right, we will sort it out.’ She promised me: ‘We’ll go private, we won’t mess around, we will get him back.’
It was exactly what I needed to hear. One way or the other, we were going to get th
is straightened out.
I only hoped we weren’t too late.
CHAPTER TWO
The A Word
THE NEXT DAY I launched straight into action. We were on a mission to save Sam. My mum was a rock and my sister, Sarah, was also brilliant – she started taking my boys to nursery with her sons, Tom and Dan, so that I could concentrate on finding the right paediatrician to help Sam. My whole family pulled together.
I turned to my friend Inma, who is a lawyer and has a little girl, for guidance. She recommended her own paediatrician and I managed to get an appointment with him in the city that same week. Jaime was away in Seville as usual – he was due back late on the day of the appointment – so my mum came with me for support.
It had been weeks by now since I’d left my house; after the consultation with the doctor and then Sam’s sudden decline, I hadn’t ventured out, focusing solely on Sam and his needs. I didn’t normally look forward to travelling into Málaga but I found I was now gasping for noise and contact with other people, even if they were strangers.
Mum drove us to the doctor’s office in her little blue Ford Fiesta. Sam was sleeping in the back – my sister Sarah was babysitting Will – and I rested my tired head against the window, watching the quiet streets of our sleepy seaside village morph into towering skyscrapers, hotels and holiday apartments. The sunburnt grass that lined the road became replaced with concrete buildings topped with flashing neon signs trying to lure people to beach restaurants and bars. We met a sea of tourists in the city centre, moving lazily through the midday heat, so deeply immersed in the holiday spirit that they seemed to have forgotten basic road safety. Mum honked the horn as they stepped carelessly into the road.
The clinic was in a high-rise on the east side of Málaga. We found a parking space in a multi-storey car park nearby and then took the lift in the doctor’s building all the way to the top floor. Sam was in my arms, his head drooping over my shoulder. Ever since his shutdown had begun, he’d lost all interest in the world around him and didn’t even look up as the elevator doors opened with a ping.
The waiting room was filled with children, all sitting on their parents’ laps. I felt sick with anticipation. I was absolutely convinced the specialist was going to tell me my son had some sort of degenerative disease. What else could it be?
I steeled myself for the worst as we were called into his office.
The paediatrician was in his fifties. For some reason I’d imagined he would be wearing a white overcoat but he was dressed smartly in cream chinos and a shirt with the top button unfastened. He was very pleasant and instantly earned my confidence. The whole set-up had a much more professional feel to it when compared to my frustrating experience with the previous doctor.
Sam sat quietly on my mum’s knee as the doctor listened intently to what I had to say.
‘Hmmm.’ He arched one eyebrow. I looked at Mum – what did that mean? He scribbled something down on a piece of paper and then slid it across the desk:
SYMPTOMS COMPATIBLE WITH
ASPERGER’S SYNDROME.
It was written in capitals, as if it wasn’t a shocking enough message as it was.
‘Asperger’s?’ I asked, uncertainly. I’d heard of it, but I couldn’t have told you what it was.
He handed me another piece of paper: written on this was the address of a clinical psychologist in Fuengirola, which was about twenty miles away. Finally, he spoke: ‘This is what I think it is.’ He tapped the second piece of paper. ‘And this is who you should see for an official diagnosis.’
And that was it.
Despite the brevity of the meeting, I felt strangely relieved on the journey home. At that time, I thought Asperger’s meant that you were a bit socially awkward, but very gifted. There had been a lot of coverage of the book The Curious Incident of the Dog in the Night-time, which is narrated by a boy with Asperger’s, and I guess my thinking came from there. It’s going to be OK, I reassured myself.
Jaime was already home and in the kitchen when we got back. I broke the news to him at once.
His interpretation of the diagnosis was similar to mine, only he seemed more positive. That was typical Jaime – take it as it comes, take it all in his stride, super laid-back and unflustered – whereas I was left with dozens of questions . . . and I wanted answers.
I turned to my computer for research. I needed to know more about this Asperger’s syndrome. I spent hours trawling the internet and very quickly became much more informed about the condition.
What is Asperger’s? I typed, my fingers flying across the keyboard.
The answer came back right away: It’s a neurobiological disorder.
What are the symptoms?
People with the condition display unusual nonverbal communication, such as lack of eye contact, few facial expressions or awkward body postures and gestures.
Yes, I thought, that’s Sam.
They may strongly prefer repetitive routines or rituals and become upset at any small changes.
Yes, that was Sam too.
They may perform repetitive movements, such as hand or finger flapping and may also ‘daydream’ or ‘zone out’ when overstimulated.
Yes, that indeed was Sam too.
Many of the symptoms I read about married up with Sam’s behaviour – however, there were also a worrying amount that didn’t. For example, Sam’s speech: if he had Asperger’s, he should have developed a style of speaking that was advanced for his age. But Sam had gone the opposite way. I also learned that in many cases Asperger’s can’t be properly identified until the child is around seven years old.
I put the boys to bed and kept researching until I was so tired that the words on the screen blurred before my eyes. I woke up with my head in my arms and a crooked neck – and a realisation that things had changed. For the tears I’d been crying before our appointment were now long gone. Instead, I had a purpose: I was now channelling all my energy into finding out exactly what was wrong with Sam and how I could get him better. I needed to see this woman in Fuengirola as soon as I could.
I instantly liked her when Sam and I entered her waiting room just a few days later. Dr Mariángeles Kalis looked typically Spanish – she had long dark glossy hair, tied neatly in a bun, and beautiful dark eyes framed by meticulously pruned eyebrows. I found her friendly and kind, and she clearly tried to make Sam feel like he was the most special child in the room, despite him being unreceptive to her efforts.
Mariángeles explained that at this first appointment she would spend some time alone with Sam, watching him play, and would call me in at the end to give me her initial diagnosis. An hour later, I anxiously returned to the playroom to find Sam in the corner, driving a yellow toy car backwards and forwards across the bright green carpet.
‘Sam, sweetie, I’m back.’ I crouched down beside him. Nothing. There was no response, not even the flicker of an eyelash.
Mariángeles smiled at me sympathetically. She’d clearly been here before with many other heartbroken parents whose children failed to acknowledge their existence. Talking over Sam’s pointed silence, she outlined to me the significance of the yellow car he was clutching.
‘I asked Sam to pick a car out of the toy box,’ she explained, recalling the game they’d been playing. ‘Sam chose the yellow one. I took it off him, put it back in the box, mixed it up and asked him to pick out another car. He picked out the yellow one. He repeated this half a dozen times.’
I stared at her blankly.
‘It’s a sign of autism,’ she revealed.
Autism – I had heard of that. Thanks to my hours of internet research, I knew that Asperger’s was a form of autism, part of what experts call the Autistic Spectrum. People with ‘classic’ autism and those with Asperger’s shared similar characteristics but there were also differences.
Mariángeles’s announcement didn’t sit well with me, though, because I had also read that ‘classic’ autism could be much more challenging than Asperger’s.
<
br /> ‘What’s autism?’ I asked nervously, wanting to hear the doctor’s take on it. My knowledge was, after all, based only on an internet search.
Mariángeles explained that autism was a developmental condition that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.
‘People with autism have described the world as a mass of people, places and events which they struggle to make sense of, which causes them considerable anxiety,’ she revealed.
I must have looked worried, for she went on to reassure me: ‘Some people with autism are able to live relatively independent lives.’
‘But others?’ I asked. My own anxiety was increasing with every question.
‘Others may have accompanying learning disabilities and need a lifetime of specialist support.’ I let that sink in as Mariángeles kept talking, describing more symptoms. ‘People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.’
My mind was busy racing over the last six months, searching my memories, trying to recall if Sam had exhibited these telltale signs of autism.
Knowing of the paediatrician’s initial diagnosis on his scrap of paper, Mariángeles went on to explain that Asperger’s syndrome was widely known as a mild form of autism.
‘People with Asperger’s have fewer problems with speaking and do not usually have the accompanying learning disabilities associated with autism,’ she explained.
As she said the words, I was horribly, horribly aware that Sam had regressed to being completely nonverbal. He definitely did have problems with speaking – did that mean he had autism and not Asperger’s? The concern in my eyes must have been clear as Mariángeles now said cheerily, ‘He’s very young, it could be a number of things.’ She smiled sweetly at Sam, who ignored her.
As the consultation drew to a close, Mariángeles told me that we would have to wait for a year to find out if Sam was actually autistic, or had Asperger’s, or had something else that was causing his regression. She wanted to continue to monitor him before issuing a formal and official diagnosis.