I’m not sure what I was expecting on that first day. The other staff were wary – here was someone with no experience or real background in professional care. My first shift was spent working with a young man we’ll call Joe. Joe, like The Boy, was diagnosed with autism. Yet it was there, in that one word, where the similarity ended. Joe was around fifteen years of age and towered over The Boy in every way. He had learning difficulties, was non-verbal and doubly incontinent. Joe had been given photographs of me to help him cope with the new face but it didn’t seem to be enough. As I walked into the room to meet him, Joe became distressed and tried to attack me, pushing me away, hitting out.
Worse yet, he then turned his fear and anger onto himself, punching away at himself with a voracity I’d never seen. It was heart-breaking, seeing the distress I was causing and not knowing what to do about it. The other staff stepped in, comforting Joe, reassuring him that things were OK. I stepped away from him, feeling like I’d failed, and spent the rest of the shift hiding in the office reading care plans, finding safety amongst the paperwork.
I walked home at the end of my first shift feeling like I’d made the biggest mistake of my life. It seems callous writing this now, but I can think of no other way to put it – I didn’t know children like Joe existed. I thought disability was hoists and wheelchairs and lullabies and I thought autism was The Boy. I didn’t know it could be all those things plus fear and anger and sadness and violence. Maybe I was naive or maybe we need to educate people more about the levels of disability in this world.
I’m sorry Joe. I didn’t know.
Slowly, over the days and weeks that followed, I began to build up a relationship with Joe and the other children. It became the most incredible job I’ve ever had. I never knew what each shift would bring. There was the young man who became so distressed at rainfall he’d try to pull fire extinguishers off the wall the moment the skies turned grey; the teenager who hated the feeling of clothes against his skin and would constantly try to rip them off; the young blind girl with a love of lip-balm and an incredible knowledge of radio station frequencies. And what struck me the most was how these children had spent their lives being dismissed as being unable to communicate, yet they imparted their needs loud and clear in their every action. Every cry and every smile – in some cases, even every blink. The irony is that they were talking to a deaf world.
It’s an odd conundrum, working in care. Here was a job that felt like the most important one I’d ever held, in which I earned the least amount of money I’d ever been paid. Not since the heady days of putting the caps on 500 ml bottles of conditioner in the shampoo factory had I seen so little cash. And I still felt a bit of a fraud – would I ever have considered such a job if my own son hadn’t introduced me to this world? I doubt it. Cashing cheques to ensure I had enough money to get me through the weekend was a much more attractive option.
I saw the frustrations of what being a care worker entailed: being told there wasn’t enough money to take the children out on a trip then discovering boxes of expensive stationery ready to be thrown out due to ‘rebranding’; jobs in jeopardy due to the tendering process; the endless paperwork and form-filling on antiquated computers that was an integral part of a job chosen by those who had shunned the office world in search of a hands-on job. It often seemed that the powers that be wanted to read about good care rather than witness it. Risk assessments, shift write-ups and care plans intruded on the care itself. People don’t go into care for money, we all know that. But give them job security, make them feel valued and appreciated and it all comes full circle.
And then I saw the families and what they went through. People whose children never slept, whose behaviour made The Boy look like Mother Theresa, who came through the doors beyond tired, only to learn that they were now to only get two nappies allocated a day or that the Saturday morning playgroup was to close due to lack of funding.
I took the test to drive the minibus and that became my favourite activity. So many of the youngsters hadn’t been on many trips away – lack of transport for some, ‘too much of a risk’ for others. Three members of staff took one twelve-year-old boy to the seaside for the first time in his life, led him down to the sea, which he decided he never wanted to leave, and it took us two and a half hours to convince him to come back to the minibus; I took a boy who loved Chelsea on a tour of the club and who was so overcome with excitement he just decided to shout ‘F*CK! F*CK! F*CK! F*CK!’ all the way around, much to the bemusement of the other visitors. Those trips out became as much about other people as they did about the children. My first shift with Joe had shaped my time there – as much as I wanted to allow the children to do everything they had always been deprived the chance of doing, I wanted to ensure we went out as much as possible. I wanted people to meet Joe and Adam and Sarah and John…
The Boy used to come and visit the respite centre. He loved it. There was a sensory room, a soft-play room, an IT suite and six bedrooms. We’d pop in now and then when I wasn’t working, say ‘Hello’ to some of the young people and stop for dinner. He always wanted to stay the night, loved the idea of the bath that moved up and down when you pressed a button and always eyed with suspicion the young person who’d be staying in room three – that was the room he wanted to stay the night in. It had a television and some of the older boys would try to sneak a peek at Babestation if you didn’t catch them quickly.
My favourite memory of that time was the Christmas party. All the young people were invited and the Salvation Army band came along for carols that no one wanted as it was just delaying the sausage rolls. It was a brilliant event.
I was asked to be Father Christmas. I agreed. Like most immature men of advancing years I had a costume at the ready and a body that had long been in training for such a momentous occasion. There was one condition though; The Boy would have to come with me.
I sat him down and explained that Father Christmas had asked us to do him a favour. The Big Man couldn’t make it to the party himself as he was so busy getting ready and wanted to know if we could help him out. I would be Father Christmas and he’d asked The Boy to be an elf. The Boy happily agreed.
At first the elf costume was, of course, too itchy and the pointy ears I purchased were never going to happen, nor the red, rosy cheeks. But after some cajoling and with ‘normal’ clothes underneath, the elf was sort of dressed for the occasion.
I’ll be honest, I hadn’t really thought the whole thing through. I imagined it would just be Santa sitting in his big chair while at his feet perched his doe-eyed elf, looking up at him with wide-eyed wonderment, passing presents to the delighted children who wandered in with their parents.
The staff had spent a week turning the sensory room into a grotto. That’s what I loved about that place and they’d completely gone to town on it. The party was only scheduled to run for two hours, but here was a grotto any department store would be proud of. Once we arrived and I went to get changed into my costume in the staff sleep-in room, I was trying to remind The Boy not to call me Daddy. ‘It’s your name,’ he said. I reminded him that I was meant to be Santa and he was meant to be an elf. He nodded, said ‘I know’ and then called me Daddy every time he spoke to me. I just told all the bewildered-looking children and parents who filed in that ‘I was like a father’ to the elves in the workshop.
And so began one of the strangest one hundred and twenty minutes of my life. The Boy loved every bit of it. Between banging presents on the floor and eating mince pies, it turned out he had quite a lot to say to the children who came to visit Santa that day. As gentle Christmas music filled the sparkling festive sanctuary, I gave a performance Sir Ian McKellen would have been proud of. And as I talked wistfully about magic dust and children sleeping soundly while the sleigh bells tinkled in the cold December night, the elf had his own script to work from.
‘BE GOOD OR YOU WON’T GET ANYTHING!’ he barked at them. ‘WILL THEY, DADDY?’
As I asked each child what they
wanted for Christmas, the elf would once again pass his opinion.
‘I’VE GOT THAT.’
‘YOU CAN’T WATCH THAT. IT’S GOT SWEARING IN.’
‘RUBB-ISH.’
Then came the lovely photograph with Father Christmas, a memory to cherish for years to come. And, as each parent went to capture the moment, with perfect timing a wild-eyed grimacing elf would suddenly leap up to occupy the screen where their loved one was meant to be. As the child went to leave, I asked the elf to pass me a small, wrapped present for them to take away. Each time he just threw the present in the general direction of the door for them to collect on their way out.
‘IT’S A SELECTION BOX. THEY’RE ALL THE SAME.’
I’ve done lots of jobs in my lifetime. Some crap ones, some not so crap. Yet I genuinely can’t think of a single position that has even come close to teaching me as much about life and the human condition as those two years in the care home. I think I’d have stayed longer if The Boy’s school days hadn’t once again become unsettled. I learnt that the bravest people in the world aren’t necessarily the loudest and that there’s courage in the small things, in the everyday. I learnt that loving someone isn’t always about walking over hot coals or making big bold statements and declarations. It can often be about doing the things you don’t want to do, day after day. And I learnt that while McDonald’s might not provide the most nutritious food in the land, it doesn’t half come in handy when you’re trying to coax someone out of the sea and into the back of a minibus.
CHAPTER EIGHTEEN
Legs Eleven
Last night all the worries and traumas of the last couple of weeks melted away. Last night… Doctor Who returned.
Given it was the fiftieth anniversary, it was being shown simultaneously at the cinema as well as on TV and I’d taken a gamble a few weeks ago and booked seats. 3-D. Near the back. The Boy hates 3-D. And sitting near the back. But this was the Doctor. Normal rules don’t apply.
Trips out so rarely cause The Boy excitement. He will enjoy himself while he’s there, but often the change in routine and accompanying anxiety means it can be a battle to get him out of the house in the first place. The neighbours must think I’m dragging him off to the orphanage by the noise and protest, rather than the family trip swimming or to the park.
But yesterday from the minute he woke up he started asking, ‘How much longer?’ At 5.00 p.m. he had his shoes on. By 5.30 p.m. he’d even brushed his teeth. We left the house with him leading the way, not dragging his feet at the back like usual. This was a trip like no other.
In the car, I was allowed to have the stereo on. And even the heater. The adrenaline and excitement surging through his body meant that he was suddenly able to cope with things that he couldn’t normally deal with. Once he told me that he doesn’t like going in a car at night because it’s dark on the floor where your feet are but tonight it doesn’t matter as he’s going to see Doctor Who.
We arrived at the cinema fashionably early. We’d had to park quite far away and I suggested we use the wheelchair. He gave me a look as if to say, ‘How do you expect me to save Gallifrey in a bloody wheelchair?’ So we walked instead. Well, I walked. He practically skipped.
We collected our tickets. I asked him if he wanted popcorn. Once again, I got the look. There would be no food or drink. How can you eat and drink and concentrate at the same time? Fine by me. Cheap date.
Then I saw the queue. My heart sank. It had all gone so well up to this point. I warned The Boy it could be a long wait. ‘Doesn’t matter,’ he said. For twenty minutes he queued. At one point we were stood next to a poster advertising the film itself. He turned to me, his face about to explode. ‘I can’t stand near that,’ he said, ‘I just want to touch it. It’s too exciting!’
Finally, they let us through. I went to walk towards the lifts as we always do but The Boy dragged me back. ‘Let’s go with everyone else,’ he said.
‘Are you sure?’ He nodded, beaming away. So last night, among a sea of bow ties, fezzes and Doctor Who scarves, a boy and his dad rode the escalator.
We took our seats, The Boy on the aisle with no one next to him. His 3-D glasses that he hates wearing were on ten minutes early. The theme music started and he began accompanying it. ‘Woo-ooh,’ he wailed.
‘Shush!’ I said, laughing.
‘I just can’t help it!’ he replied.
I’m not sure what happened for the rest of the film. The Boy was lost in it all. Every now and then I’d glance over, seeing the lights from the screen dance across his face. Mesmerized. The film ended. Exhausted, The Boy slumped back in his chair, silent.
‘Come on, kiddo,’ I said, helping him on with his coat, ‘time to go home. Let’s go and get the lift.’
MY SON’S NOT RAINMAN BLOG
The diagnosis of autism helped in other areas as well as with the school. We still had so many concerns regarding The Boy’s legs. We’d managed to get a physiotherapy referral but ‘tight hamstrings’ was the furthest we’d got up to this point. Yet having the word ‘autism’ attached to medical records seemed to make people listen far more than they ever had previously. Maybe it was all just a coincidence, but less than six months after that first diagnosis the three of us found ourselves at King’s College, London to see a neurologist.
‘Hellooo, I’m Michael!’ he beamed, with a demeanour more suited to a children’s television presenter than the senior hospital consultant he was. I liked him instantly, as did The Boy. ‘Now then, young man, let’s take a little look at you. I normally ask people who come to see me to walk up and down the corridor outside for me, but I bet you can’t do that…’
The Boy did exactly as Michael asked. Some people just have a natural way with children, whatever diagnosis or condition they may present with. Despite the numerous autism strategies and guidelines, sometimes there’s just something inbuilt, something inherent in a person that can’t be taught, something that enables them to communicate across all levels. Whatever that magic ‘thing’ is, Michael had it in spades.
‘Wow! You are brilliant at that! I bet you can’t do that again for me?’ he said, as The Boy turned to strut his stuff up and down the hospital catwalk once more, keen to please his new friend.
‘Super stuff! Now, let’s do the boring bit and have a closer look at those legs. Do you like Ben 10? Ah, Power Rangers, eh? I think Dad would look quite fetching in one of their outfits.’
Eventually, the poking and prodding was over. The Boy, having been to enough appointments to know the drill by now, knew it was his turn to chill out. It seemed that in every consulting room across the land there sits a magic cupboard in the corner of the room with a few stark wooden toys inside – just enough to crash and bang through the boring talking bit.
‘Well,’ said Michael, that reassuring smile never quite leaving his face, ‘I’m 99.5 per cent certain it’s cerebral palsy. It looks like spastic diplegia. The tightness in the muscles, the walking gait, they all point to that. It’s mild, if that’s the case. We’ll need a CAT scan of the brain, just to be sure.’
I don’t remember what I thought driving home. I didn’t think too much about things really – I think that word ‘mild’ had given us some reassurance. Spastic diplegia. I promised myself that whatever I did I wouldn’t look online; there was nothing to be gained from that. There was a queue getting out of the hospital car park. By the time we’d reached the barrier I was on page two of Google hits. There were even videos of children with the same condition on YouTube. The way they walked, the position of their legs, they were just like The Boy.
Rather than being comforted by them, the clips sent my mind into a tailspin. How had it been missed all these years? It all seemed so obvious suddenly. And that word, ‘spastic’. I was a child of the 1970s, the era of the Spastic Society, and even now the ignorant associations of that word echoed round my head as the insults had across countless school playgrounds all those years ago.
The CAT scan some weeks later c
onfirmed things. Cerebral palsy.
Cerebral palsy is a condition that affects muscle control and movement. It’s usually caused by an injury to the brain before, during or after birth. Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop. There may be no obvious single reason why a child has cerebral palsy. The main causes of cerebral palsy include:
• Infection in the early part of pregnancy
• Lack of oxygen to the brain
• Abnormal brain development
• Genetic link
Present in around 75–88 per cent of people with cerebral palsy, spasticity means the muscle tone is tight and stiff, causing a decreased range of movement. As the muscle tone is so tight, spasticity can be very painful with muscles often going into spasm. It can affect many different areas of the body.
SCOPE.ORG.UK
‘The condition isn’t in itself degenerative,’ Michael reassured us on our next visit, still smiling away. ‘However, as the child grows it will become harder for the leg muscles to support the body. We’ll do some physiotherapy to try to maintain strength and there are some surgical options we can look at down the line. I’ve made a referral to the wheelchair service for you. They’ll be in touch.’
And that was the first time that word was used, ‘wheelchair’. This was a boy who had been diagnosed with knock-knees and suddenly here we were discussing wheelchairs. ‘It will help with longer distances,’ said Michael, ‘just to walk and keep up with his peers. He’s expending around ten times the energy of his friends. Use a wheelchair to prevent tiredness. He’s a child – keep that energy for the playground when you get there, not for the walk to the playground.’
My Son's Not Rainman: One Man, One Boy, a Million Adventures Page 14
