The entire haircut lasts approximately three minutes. No water sprayed, no noisy clippers used. Nicholas is a good man. The Boy climbs down from the barber’s chair and most of the hair that has been removed from his head is stuck to his face and neck with his own saliva. But he’s smiling. The battle is over and he knows that Hair-Wash Day will be quicker than before.
Nicholas retires to the till in the corner, battle-weary but relieved that this day will be over for another six months. I hand him a tenner. He knows not to bother with the change. Danger money.
Me and The Boy leave through the door. ‘I’m really good at getting my hair cut now, aren’t I, Daddy?’
Yes, mate. You’re just fine.
MY SON’S NOT RAINMAN BLOG
I’ve dropped The Boy off to spend time with his cousins – his favourite pastime by far – and I’ve come away again to do some writing.
I went on Airbnb and selected a self-contained cottage in North Wales. Oh, the exoticness. What it actually means is a lovely old dear has converted her garage into a bedsit. It’s December and I can’t begin to put into words how cold this place is. There’s a thermostat on the wall for the central heating that is set to 12°C.
‘Don’t go mad with the heating, will you, love?’ she said as she let me in. ‘I don’t charge a lot.’ On the first day I snuck it up to thirteen but I went to the shops yesterday and when I came back I noticed that it’d been put back down. I sit here writing and not fifteen feet away across the garden is her conservatory, resplendent with flashing Christmas tree lights, the windows covered in condensation as her own central heating blasts full-on.
I hadn’t realized just how emotional it is, going back in time. At every point I find myself suddenly sobbing over the bloody keyboard. Memories come flooding back, both good and bad. Beautiful moments of his childhood that were lost after the diagnosis. I suppose most of the sadness has come because I didn’t understand him then as I do now. And if I had, maybe some things wouldn’t have been quite such a struggle for him.
A few months passed after my brother first mentioned the a word. We’d put it to one side and carried on with life as best we could. I can’t pretend it was far from our minds, both myself and his mum, especially as The Boy continued to stretch the timeline for his developmental targets to the absolute limits. But on each occasion, just as we were about to raise concerns, he’d confound us and come through. For example, walking – he’d eventually started to walk, precariously wobbling. There had been no build up to it, no real crawling – another milestone missed – instead we had a brilliant bit of bum-surfing and that was it, he was away. It felt like he was just living a life on his terms, not ours.
He had the strangest little walk on him though. Legs turned in, no real balance and his shins and knees were forever covered in bruises, each one testament to a fall. We weren’t overly concerned – much like everything else, we simply thought he’d catch up one day. We mentioned it to the GP.
‘He has knock-knees,’ he reassured us. ‘He’ll grow out of it by the age of six or seven.’ We had no reason to doubt things: he was doing everything eventually. We had concerns around The Boy’s behaviour certainly, but that was put down to the ‘terrible twos’. He was a toddler, he’d grow out of this too, right?
Once The Boy started nursery, it became clear how difficult he found transitioning from one event to another. It’s something he continues to struggle with enormously to this day, that period where he must stop doing one task and start another. The morning routine was particularly difficult. It quickly became a skilled affair that required both parents. Every day it felt like playing with an old World War II bomb. It needed to be treated gently, carefully. It could go off at any point. Unlike a bomb, however, the worry was once The Boy went off he would continue to go off for the rest of the day.
We started to develop our own way of doing things. A sense of humour and the ability to turn every task into a game certainly helped. Years later after the diagnosis we would use little pictures stuck to doors and cupboards – visual reminders for The Boy to prepare him for what came next.
GET DRESSED > BREAKFAST > TELEVISION > BATHROOM > SHOES > GET OUT OF HERE
It is incredible just how much being able to visualize things helps him. But in those days there was none of that. Looking back I understand that each morning was like Groundhog Day for The Boy. He seemed to have no real memory of what happened the day before. As parents we knew what was coming next, as we’d done it all yesterday and the days that preceded that. But without a visual reminder for The Boy, there was no link. Each morning it seemed as though he was doing it all for the first time and his refusal to comply wasn’t based on a ‘toddler tantrum’, as we thought, but rather came because everything was new and scary and he wanted it to stop. Eventually, we’d get there.
By far the most precarious stage, the one at which it could and so often did go horribly wrong, was the bathroom, even if the rest of the morning had gone relatively smoothly until this point. Teeth-brushing was a case in point. Or, to give it its full title, Hey, I’ll Tell You What, Mate, We’ve Had Not a Bad Morning Getting Ready, How About We Head Into the Bathroom for a Fight? As with most things, with patience, practice and perseverance it became easier over the years. Different strategies have worked, some better than others. Musical toothbrushes, Toy Story toothbrushes, electric toothbrushes, flashing toothbrushes and soft toothbrushes, they’ve all played their part. Strawberry toothpaste, banana toothpaste, bubble-gum toothpaste, you’ve served us well. Mint toothpaste, you will continue to be the root of all evil. Bicarbonate of soda toothpaste, you’re beyond words.
Once teeth-brushing was complete (I say brushing, it was more just holding a toothbrush in his mouth for two minutes – it might as well have been a thermometer) we moved on to washing. To this day, we have to use ice-cold water. We never use the hot tap even to lightly warm the water – anything above freezing cold burns during the washing process. First The Boy puts his hands in the freezing water. He holds them there for longer than would appear humanly possible. On no account should his hands be rubbed together. Next he touches a bar of soap with the very tip of his fingers. That’s the soap bit done. Now he throws water all down whatever clothes he is wearing that day. He is careful to avoid his face at all times.
Perfect. Face and hand washing done.
Every now and then things would go OK, as they do for every child. The Boy was nothing if not consistently inconsistent. It was on the days that the morning routine went really smoothly that we’d suddenly be lulled into a false sense of security and, like a fool, I’d reach for the hairbrush.
And so life went on. Each day The Boy eventually left for nursery with a mop of unkempt hair, water down his front and a smudge of toothpaste across his cheek.
Whatever struggles he had with the day-to-day routine of life, it was the monthly or bi-monthly events that caused him real anxiety. Take Toenail-Cutting Day, for example. Even now, ten years later, I still carry the battle scars from going into this one unprepared. He was around two years of age when we came up with the routine and it has largely remained unchanged. As for all great events, the key is in the preparation. Twenty-four hours is the optimal period to prepare The Boy for Toenail-Cutting Day. Any longer causes anxiety, any shorter and I might as well be performing open-heart surgery on him with a blunt teaspoon and no anaesthetic.
In order for Toenail-Cutting Day to have any hope of success we must follow these simple steps. Stage one:
Empty the bathroom of any items that aren’t stuck down. Find the largest bath towel in the house and place it at the foot of the bath, ready. Put the nail scissors discreetly behind the toilet cistern, ready. It is of the utmost importance that these aren’t spotted in advance. Lower the toilet seat lid. This will be the operating table.
Now we’re ready for stage two:
Run the bath. Don’t add any cold water. Only use boiling, almost scalding hot water. After calling, ‘Bath’s ready!’,
prepare for a ninety-minute battle to get The Boy into the bath, by which time the water will be at an ambient temperature. Now The Boy is in the bath he didn’t want to get into, he will refuse to get out. Don’t try to be clever and take the plug out. He will sit in a cold, empty bath quite happily. Instead, frighten him. Tell him that these horrible little creatures called bacteria live in the bath and they eat children’s skin, starting at the fingertips and that’s why they go all wrinkly. (Yes, I’m horrible, but needs must.)
As he leaps out of the bath wrap him in the large bath towel that was put in place earlier. Keep his arms tucked inside, that’s key – imagine a roll of carpet with a head sticking out of one end and feet at the other. Still holding him, he can be lowered on to the toilet seat in the same movement – there should be just enough give in the towel for him to be bent into the sitting position. Now take out the nail scissors. Remember, speed is of the essence.
Now comes the weird bit. Each of the toenails has been assigned a name. The left foot is always girls, the right foot boys. The left big toe is always Fiona. On the right, it’s Fred. The other names are allowed to change. And so the toenails are cut with phrases such as ‘Oh, Florence, haven’t you grown since I last saw you?’ and ‘Come on, Ted, be a good boy and get your haircut.’ Sometimes… sometimes it’s a blessing he bites his fingernails.
However, as bad as Haircut Day and Toenail-Cutting Day got, it was the nights that were the hardest. Even as a toddler, he raged and fought against going to sleep. It was starting to become obvious that The Boy hated being alone. It almost felt as if he might stop existing if someone wasn’t with him. Constantly. We’d tried controlled crying, we’d tried wrapping him tightly. Nothing in those bloody self-help parenting books that still dominated the bookshelves seemed to work. It was exhausting, for all of us, not least The Boy. More often than not, I’d fall asleep lying with him as I read a bedtime story or his mum would. Without really even realizing it, she and I were spending less and less time together as a couple.
CHAPTER SEVEN
Scooby Dooby Doo
This morning I was woken at 6.10 a.m. by The Boy demanding an answer to the burning question, ‘How old was God when He died?’ I’m not sure what prompted this, but every answer I gave was wrong. I said He wasn’t dead. The Boy asked where He was then. I said He was everywhere. The Boy said He can’t be everywhere, He’s not here. I said you can’t see Him. The Boy said He’s a ghost then. I said He’s not a ghost, He’s not dead. The Boy said where is He then…
IT’S SIX O’CLOCK IN THE MORNING ON A BANK HOLIDAY!
So I told him God died at the age of forty-eight – He finished building the world and then died. ‘Is he in heaven?’ Yes, yes, son, yes, I’m sure he is. Now please go and play in the road and leave me in bed for five more minutes.
It’s not just God. Heaven was something we talked about a long time ago. Heaven is where Nosey and Fang the hamsters are, together with two great grannies, one granddad and a bird we found at the side of the road. We cried more tears for the bird than any of the others put together. They all live together in heaven and have a swimming pool. Everybody in heaven has a swimming pool. And XBox Live Gold.
I’ve told The Boy countless numbers of these shitty ‘facts’ over the years to make life easier. Most of them in the heat of the moment and then I’ve regretted them instantly. Later this year we’re apparently going on holiday to Timbuktu because in 2009, in a moment of despair, I told him that’s where the Power Rangers lived. But once you’ve said something, in his mind it becomes as real as he is. When he was younger he refused to wear a seatbelt. One day he took it off while I was driving along the motorway, and I told him that if you travelled in a car without a seatbelt on you would crash and die. That has now become set in stone. To this day, he will not let me start the car engine until everybody is securely strapped in and he has done a visual check. Until yesterday.
I pulled out of school and I didn’t notice my seatbelt wasn’t on. Neither of us did. The excitement of getting two Easter eggs from his teacher had distracted him. Fifty metres up the road I realized my error. I tried to pull the belt discreetly around me without him spotting it. I failed.
‘I CAN’T BELIEVE YOU DIDN’T WEAR A SEATBELT AND NOW WE WILL DIE AND IT WILL BE YOUR FAULT. WHY DO YOU WANT TO KILL YOUR SON?!’
Tears were already streaming down his face, the rage filling every part of him, the fear all too real in his eyes.
‘YOU’VE MADE ME REALLY ANGRY AND WHEN WE’VE DIED AND WE GET TO HEAVEN I’M GOING TO HIT YOU REALLY HARD FOR KILLING US.’
Yeah, look, about this heaven business…
MY SON’S NOT RAINMAN BLOG
‘Hello, Mr Williams? Hello, it’s Jane calling from the nursery. I was wondering if we could have a word.’
Ah, the infamous phone calls home. They started fairly quickly after he joined nursery and have remained a constant feature of his education. People sometimes have a perception of life with a special needs child – that, despite its difficulties, it’s somehow a life of privilege with our own parking space, pushing in the front of the queue at Disneyland and getting to board the aircraft first. It creates an impression on the surface that all is well, that we as a society are doing our bit for our most vulnerable members and we can pat ourselves on the back and get on with our day. The reality of it, however, is a little different. Discreet phone calls, wanting a ‘quick word’. ‘Don’t worry, it won’t take long.’
The Boy was first removed from a nursery at the age of two and a half. It was accomplished in a more polite fashion, of course. An initial meeting. Concerns. He doesn’t seem to be settling. He hasn’t really made any friends. We’ll keep an eye on him. Have we considered any other nurseries in the area? Maybe somewhere with a bit more space?
Then on to nursery number two. Once again, it’s all smiles at first. We’ve made the right choice, they just couldn’t get a handle on him at the old place. Look at his dimples! And freckles!! Isn’t he lovely! Two weeks later he’s described as a livewire. Another week and there’s been an ‘incident’. A phone call in the afternoon. Then one at lunchtime. Eventually we don’t even make it to morning snack. Have you considered any other nurseries in the area? Maybe somewhere with an outdoor area?
Eventually, around the age of three and a half, we tried a childminder. We visited a few. Smaller groups, we thought, maybe he’d settle. Our first choice was lovely and I know she tried her best. She even let us down gently, although it has to be the first occasion where apparently the family cat has an allergy to a child rather than the other way around.
We both worked at this point, his mum and me. It seems easy to look back and think we should have given up work sooner. To be frank, we couldn’t afford to. We didn’t own our house, we were already living in one of the cheapest parts of London and money was incredibly tight. We just couldn’t afford to drop to one wage.
Oh, what a miserable bloody picture I’ve painted. It wasn’t a great time though. And I suppose what hurt the most was that with every phone call it felt as if here were people rejecting my child. Rejecting him. I touched on this earlier, I know, but let’s face it, we all want our children to be loved and liked, to be popular. I never thought I was a particularly jealous person until that point. Jealousy is something we associate with jilted lovers or playground spats. We’re so often told what a horrible emotion it is. And yet over the years it’s one I’ve experienced time and time again, that has come back in waves, often when I least expect it. And even writing it down now, admitting it, seems to be some shameful confession: there were times when I was jealous of other people’s children.
From strangers in the playground to my own beautiful nephews and niece, there were moments where I became jealous of them all. Every football goal scored, every exam passed, every joke told, they all caused this horrible feeling inside that I tried to push away. Why couldn’t my son do that?
Thankfully the feeling has subsided over the years, but I still get
over-emotional when people tell me what an amazing son I have. Because for so long no one ever did.
The one saving grace we had was to go home and visit family now and again. I can’t pretend I didn’t feel judged there as well, because I did feel it, even if that wasn’t in reality the case. I had started to lose any confidence in myself as a parent. I thought, it must be something we did. Maybe we were too soft or too tough or not consistent enough. I just didn’t know. And so he and I made plans to head away for a long bank holiday with his cousins. Mum would stay at home to give her a chance to catch her breath for a while.
We began by loading the car. By this point The Boy had started becoming very attached to things. Objects. I think they gave him a sense of security, a sense of consistency in an ever-changing world. The environment might change, but surrounding himself with familiar things helped to give him an anchor, a sense of self. He’d want to take things wherever we went. That caused all kinds of problems with the nursery because we weren’t allowed to bring toys in, not since the day Shane had snuck in an orange car from home. Despite the staff seeing how distressed this rule made The Boy, they wouldn’t budge. It only served to make that morning routine even more precarious.
We made preparations to travel up north, with The Boy having a few things he wanted to bring with him. I wheeled out his Winnie-the-Pooh suitcase and he knew instantly that meant we were going to visit his cousins. He selected a Scooby-Doo DVD to take with him. That would go in the suitcase. And seeing it in the suitcase all alone seemed to bring out his compassionate side. The poor, lonely DVD couldn’t travel alone. It needed its friends. All the rest of his DVDs would go along as well. And now there was an issue. How could we take the DVDs without taking all the VHS videotapes too? They all belonged together. So every bit of recorded film we’d ever owned was put in the case. The suitcase was now overflowing. That was OK, we could just use the bed. And the last VHS videotape went on to the bed, A Dinosaur’s Tale. Now it turned into a word association game. Dinosaurs. We needed to take his dinosaurs. All of them. Out came every plastic dinosaur he owned, launched onto the bed with an urgency not seen since we lost Woody’s hat some weeks earlier. Talking of Toy Story, the final dinosaur he selected was a cuddly version of Rex which he picked out from his teddy-bear selection. But he couldn’t take one teddy bear and leave the others, that wouldn’t be fair. All the teddy bears had to go on holiday.