THERE WERE BOXES everywhere – but not enough time to fill them.
Darren worked overtime packing everything up, ready to be shipped home to England. He had two days left before he had to be back in South Korea and he didn’t stop packing for twenty-four hours straight – whereas there came a point when I physically couldn’t lift another thing and dropped, exhausted, into the wicker chair on the veranda. Darren, in contrast, seemed indefatigable – and still managed to find time to have fun with the boys as he worked, throwing shredded newspaper over them, much to Will’s delight.
Hard as the packing was, an even greater challenge was preparing Sam for the move. Lynda Russell had been incredible – she had sent me a box full of visual aids, plus photos of the school and of all the teachers so I could piece together a story for Sam. Just as Mariángeles had taught me, I knew that if I could show Sam what was around the corner, I might hopefully reduce his anxiety about the new routine to come. It wasn’t enough to show him once, but every day, throughout the day, I had to show him the cards and photos.
I would pull out the pictures as I cuddled him on the sofa. I held Sam close, not just because I loved having him near to me, but because the physical contact helped to keep him focused.
‘This is your new school. This is Mr Hemelik, your new headmaster,’ I said cheerfully.
No response.
‘This is Mrs Sharp, she will be helping you in class.’
No response.
‘Look at all our toys! We have toys outside too,’ I read from the school’s card, pointing to the sandpit and the climbing frames.
Finally, Sam cracked a hint of a smile.
Sam could say a few words, but not in succession. He was five years old, but his speech was equivalent to that of a two-year-old. At this point, I wasn’t sure if he’d forgotten how to speak. Anything visual I could show him about our move I pulled out – such as pictures of the barn conversion we were going to rent and even pictures of the aeroplane we were going to travel on.
I prayed to God that his transition wouldn’t be as bumpy as our attempts to sell the house. The sale of our Spanish home had fallen through at the eleventh hour, which meant I couldn’t buy the house I’d set my heart on in Devon, and also explained why we were renting (the last thing I wanted to do for Sam, as it would eventually necessitate another move for him once we were in a position to buy). But we had no choice but to abandon the house in Spain now (I would keep trying to sell it from the UK) and depart for Devon, for Sam was due to start school the following week, in September 2008.
For our new, rented home, Darren and I had settled on a converted barn in a village called Diptford, which was half an hour away from Manor Primary by car. To my delight, when Darren came home from the oil rigs, ‘home’ for him would now be with us.
I kissed and hugged my partner goodbye when moving day finally arrived and told him I couldn’t wait to see him in a month’s time when he came back from the rig. I then stuck the ‘For Sale’ sign back up, closed the door, and that was it. I put Spain behind us and looked to the future.
Today was the first day of the rest of our lives.
Amazingly, the journey went fairly smoothly. Sam was calm on the plane and I managed to find the house without getting us too lost. I was lucky enough to have a crack team of relatives helping us out: my mum came over to assist, and Darren’s parents and sister also kindly mucked in. We all met at the airport and drove in convoy to the barn. The boxes had arrived a day earlier, and thanks to Darren’s marker-pen scribbles I could work out which ones housed the essentials. Working together, we got the beds set up and the pots and pans unpacked in time for the boys to start school the following week.
We even managed to fit in some sightseeing on the final few days before the new term began. The boys and I visited the steam railway, the otter farm and the butterfly farm. I wanted to show Sam and Will how wonderful England was and how happy we were going to be there.
I was delighted to see that Sam was responding well to his new environment. He loved the steam trains – as soon as he got home, he pulled out a drawing pad and sketched the scene from memory. His drawing had come on leaps and bounds in the past year or so, since he had first drawn that super smiley sunny face in the blue felt-tip pen. His art seemed to be some kind of outlet for him: a way to express himself, given language eluded him. Now, as I watched, Sam drew the railway signals and the diverging tracks – details other children might not have included. It was breathtakingly good; much better than most adults could have managed.
Things seemed to be getting better and better. By this time my mother had returned to Spain. I almost cried with happiness as I chatted on the phone to my mum that night, telling her how all the hard work had been worth it. She would be able to see that for herself when she moved over to the UK, though she didn’t yet have a date for that. And I knew the icing on the cake would be Manor Primary; I couldn’t wait to drop Sam off there the next day.
Lynda Russell had sent me a breakdown of all the different ways she would be working with Sam, and it was a far cry from anything he’d experienced so far. The CAIRB worked on the areas that children with autism struggle with, such as social interaction, attention and engagement. Lynda’s teaching objectives were to develop social awareness; to develop behaviour management skills and promote behavioural improvement (such as helping Sam regulate his ‘flapping’); to develop care taking (a lot of children with autism aren’t aware of danger and can run into traffic blindly); to develop communication; and to develop gross and/or fine motor skills (Sam had very poor upper body strength and hand/ eye coordination). Photos and video recordings were key to Lynda’s teaching. For a child with autism, the use of a picture can be so much more illuminating than words.
At the start of the school day Sam would have a visual timetable so he knew what to expect. There would be symbols for everything – for books, toys, toilet, teacher, pen, sandpit, reward, reading, quiet time, car, home. Once the work or the action was completed, the symbol would be removed from the timetable: no longer something to worry about. Sam would have a work station (a type of desk that has an enclosed upper part, which makes the children feel safe and less easily distracted) so he could study on his own. The tasks the teachers set him would be repetitive and very predictable; things that Sam could do without help and not be alarmed by. He would have two baskets: he’d take the activities from the green basket and then put them in the red basket once he’d completed them. Everything was regimented and routine – just as Sam needed it to be.
Lack of empathy for others is a classic autistic trait and Sam really struggled to read other people’s moods – he could never tell whether I was happy or sad. Lynda Russell wanted to tackle this head-on by teaching Sam how to read emotions and understand gestures and facial expressions. This would help him interact with others and, most importantly, make friends.
Visual aids would be used in each lesson to help pupils construct written sentences. For example, Lynda would use pictures of the nursery rhyme ‘Humpty Dumpty’ to help Sam expand it into a story; the aim being, as Sam progressed, that he would need fewer visual clues and just a few clearly written prompts.
Lynda also explained how those moments when I thought Sam looked ‘away with the fairies’ were important for his wellbeing. Children with autism need time to be alone and go into their own little world in order to reduce their anxiety levels and stop their brains becoming overloaded. As such, Sam would be given a card to use when he was in his mainstream classes. He would show it to his teaching assistant (TA) when he felt himself becoming overwhelmed and needed ‘flapping’ time, and he would then have permission to go back down to the CAIRB and into the quiet room to chill out. All this would teach Sam how to regulate his moods and hopefully prevent meltdowns – those moments when Sam’s anxiety ‘boiled over’ and made him lash out, like he had done with the boy in the dining hall and with the supermarket staff when they’d tried to touch his head.
It was very much Lynda’s belief that the children on the CAIRB should interact with nature to help their sensory issues. Many people on the autistic spectrum have sensory issues, which means they can be hyper- or hyposensitive to one, all or some of their senses. For that reason, there was a special garden at Manor Primary kitted out for the children with a waterfall and plants that they could touch to stimulate their senses. The school also organised regular trips to animal farms such as the Donkey Sanctuary, which offered animal therapy to the children. Riding the donkeys also helped to build their core strength; something with which, again, many autistic people struggle. Lynda’s approach was a truly holistic one, which I loved.
I think Will was just as excited to see Sam start Manor Primary as I was. He bounced around his brother as I tried to get Sam dressed in his school uniform, which consisted of a white polo shirt, a green sweatshirt with a yellow school logo, grey trousers, black shoes and a matching green rucksack. He looked adorable.
‘I want one!’ Will tugged at Sam’s bag.
‘When you are a bit older, you can have a uniform too,’ I reassured him, ruffling Will’s blond mop.
Sam couldn’t dress himself due to his poor gross motor skills. The times I had let him try, he’d ended up looking like a miniature superhero, with his pants on over his trousers! His brain couldn’t process what order things should go in.
I dropped Will off first at the preschool. I gave him a massive hug and kiss and then he spun around and confidently toddled off to meet his new classmates. I knew Will would be fine; he was a feisty little rascal.
I felt a lot more nervous handing Sam over. My heart was in my mouth as I led him down the many steps that funnelled to the school gates. It was hard to block out the bad memories of his time at school in Spain. I wondered whether Sam would be OK, or whether I had made a mistake by putting him in a mainstream school, despite the amazing facilities of the CAIRB. What if he was bullied?
But as soon as I saw Lynda’s smiling face as she patiently waited for Sam at the gate, my worries evaporated. She has an indescribable aura of serenity about her and speaks in a soft, gentle voice that is almost soporific. She took Sam’s little hand in hers and led him off through the arched doorway. I had a tear in my eye as I watched Sam’s rucksack bob up and down. I had thought this day – the day I’d be waving him off to a school that truly understood his needs – would never come.
I was glad to have the unpacking to do to take my mind off how the boys were coping with their first day. By the end of the afternoon I was hopping from one foot to the other, desperate to get back into the car and rush to the school gates to pick them up.
Will had had a brilliant first day. He came out beaming, clutching an A4 piece of paper covered in blue and green squiggles.
‘Thank you, Will, that’s beautiful,’ I said as he presented it to me proudly. I crouched beside him, planting a big kiss on his rosy cheek, then lifted him into my arms. We descended the steps together to meet Sam at the internal school gates.
My eyes were darting back and forth, scanning every child who burst through the door for Sam. But, in the end, it was Will who spotted him first.
‘Sam!’ he screeched, wriggling in my arms.
Sam had emerged holding Lynda Russell’s hand. It was such a small gesture from her, but it meant the world to me to know he was in such safe hands. As time went on, I learned that this was something the school did for the first year or so: the TAs waited for the children at the school gates in the morning and always brought them out again at the end of the school day too. The point of this was to give Sam continuity and keep his anxiety levels down, and it was clear from the off that it was working.
‘Sam, have you had a good day?’ I asked enthusiastically. From my research into autism, I knew to reinforce Sam’s name, so that he knew he was being spoken to.
‘Yes.’ He nodded. He communicated.
My heart leapt – Sam had barely said a word to me all the times I’d picked him up from school in Spain.
Lynda gave me a quick debrief. She explained how Sam had started the morning in a mainstream class. She’d stood at the back, observing his behaviour. Within half an hour she had gauged it was too much for Sam, and had whisked him off to the CAIRB.
Lynda’s aim was to integrate Sam fully into all mainstream classes eventually, but she couldn’t tell me how long that would take, or if it would ever be possible.
What she did notice, though, was how much he enjoyed the CAIRB’s sensory room, which had lights on the walls and the floor, and plastic towers with water bubbles. Its purpose was to stimulate the senses but in a gentle way, so the children didn’t feel overloaded. Sam had loved the spaghetti lights – LED lights set in long, 3m strips of plastic tubing; they glow and turn different colours with a dimming effect – because they were in straight lines. Lynda said he’d spent a while lying with them and clearly found them very calming.
As I gathered my sons and we headed back to our new home, I felt like everything was falling into place. Sam was sorted, Will was sorted and, just a few days later, Lynda Russell even thought of a way to integrate me into Devon life.
‘Do you have any friends here?’ she asked me one morning as I dropped Sam off.
‘I don’t really know anyone,’ I admitted shyly.
‘Right then!’ she declared.
It was now my turn to be led away by Lynda Russell. She guided both Sam and me through a rabbit warren of corridors into a classroom. It was where Sam registered every morning before he was taken down to the CAIRB, but I had no idea what Lynda was planning.
‘This is Sam’s mum, Jo,’ Lynda announced, introducing me to the teacher, Mrs Langdon.
Then she threw me in at the deep end. ‘Can Jo help you out?’ she asked Mrs Langdon.
‘Huh?’ I spluttered. I was so taken aback. ‘Me? Help out here?’ I looked around me at the sunny classroom.
Lynda then told me that she thought I’d be perfect for a new teaching assistant opportunity that had just come up. The school was looking for a mum to help out in the classroom, and given my language skills she also suggested that I might be able to teach the children in the mainstream school some Spanish. Lynda thought the informal role would help me to make friends and, of course, I would also be able to see Sam and check he was settling in OK.
Though I was keen, I was also concerned that my presence in Sam’s classroom might affect his progress, but Lynda reassured me it would actually help to put Sam at ease, plus I’d only see him first thing, at registration. Sam would then go off to the CAIRB while I remained helping out in the mainstream class.
I mulled it over. How can I turn down the chance to keep a closer eye on Sam after all those months of being kept in the dark in Spain?
‘When do I start?’ I said, beaming at her. All the paperwork went through quickly and before long Sam and I had a new routine of our own as we both spent our days at the school.
Watching Sam in class every morning not only put him at ease, but also assuaged some of my long-held worries about his future. One of my greatest concerns had always been whether Sam would be able to live a normal life. Would he have friends? Would he be able to take care of himself if, God forbid, anything happened to me?
Seeing Sam happy in a classroom full of neurotypical children told me that he could. He didn’t necessarily interact with them, but he wasn’t anxious and he wasn’t lashing out. It was such a relief. It gave me hope that he could one day live a full, happy life alongside others.
I always stood at the back while Mrs Langdon went through the register. With the surname Bailey, Sam was always second to have his name called.
He sat cross-legged on the floor, his arms neatly folded in his lap.
‘Yes,’ he responded confidently to the teacher, every morning.
And every morning, I felt a flutter of pride.
That’s my boy.
My new job in the school was a mixed blessing, though, for the fact that I could keep a close eye on Sam also had its drawbacks – namely when it came to breaktime. My classroom was on the ground floor and it gave me a great view of all the goings-on in the playground. One morning, I was tidying away the toys in time for the next lesson when, out of the corner of my eye, I saw Sam standing by the fallen oak tree that dominated the far end of the playground. The children often used it as a climbing frame, but on this day my son was the only one there.
Although no longer in practice, at that time the teachers dressed the children with autism in luminous vests at breaktime. A couple of them were ‘runners’ – an unofficial term used to describe those children who had a tendency suddenly to take to their heels, which could be dangerous as a lot of people with the condition don’t have any awareness of danger. The brightly coloured vest meant I could spot Sam a mile off, but in truth I didn’t need it. He stood out a mile on his own. He was running up and down the tree, flapping his arms. Every now and then he’d stop and hold his hands in front of his face while he studied his fingers, and then he was off again, lining up his eye with the straight contours of the tree. Not one other child held his interest. Not one other child wanted to play with him.
I can’t put into words how upsetting it is to look out of a window and see a playground full of other children having fun, kicking a football around and chasing after one another, and then there is one little boy, your boy, who is all alone, running up and down and flapping.
I felt a lump form in the back of my throat.
My only consolation was knowing that Sam wouldn’t have been upset to be alone. Children with classic autism tend to seek isolation and exclusion, whereas children with Asperger’s don’t – many really want to make friends but don’t know how to. But Sam wasn’t like that.
It still broke my heart, though. So much so, I eventually thought about giving up the job. I found it too hard to watch, and not intervene – not to go and be his friend, or encourage him to join others when, really, he was happy on his own.
At this time Darren had moved to a rig just off the Egyptian coast but, of course, he was still only a phone call away, wherever he was working. He was employed by a company based in Scotland, so all I needed to do was ring Aberdeen and I’d be rerouted directly to his office. I felt so emotional whenever I told him the stories of seeing Sam alone in the playground. Darren could always hear in my voice how difficult I found it.
‘Why don’t you give up the job?’ he said matter-of-factly one day. We agreed that it was probably best for me to give up my voluntary position at Sam’s school. Darren knew that I wanted to find paid work, but as we talked he could sense my concerns about not being able to be there for Sam if I was in a full-time job. He put forward the idea of me not going to work at all.
‘Well, how will I pay the bills?’ I reasoned.
‘I’ll pay them!’
I was stunned into silence. It was the most generous thing a man had ever done for me. I was used to supporting everyone else, not the other way around. Apart from when I was on maternity leave, I’d never been without a job and I’d always paid my way. The idea of Darren supporting me went against everything I believed in: that women should be strong and independent. His generosity left me speechless.
‘I don’t know what to say,’ I stuttered eventually.
‘Say yes!’ he urged.
‘I don’t know . . .’ I started.
‘You could put all your energy into helping Sam instead,’ he said persuasively.
I paused to think. He had a point. Though Sam was much more settled now that he was in a school that knew how to deal with his needs, he was still struggling with the most basic life skills. Devoting my time to helping him now, while he was still young, was the best way to give him the best possible chance of living a life where he could be part of society, and not just sitting on the sidelines. That was what I wanted for him, more than anything.
I could hear Darren breathing on the line, patiently waiting for my reply.
‘Thank you,’ I said simply, as I accepted his incredibly generous gift.
Little did I know it, but Darren and I had just made a crucial decision. For Sam was about to need me more than he ever had before.