As we entered the room, Mum took the seat next to her. Dad was hanging on to The Boy, who was already protesting at having to leave his copy of Cosmopolitan in the waiting room. It was a small room too, claustrophobic. There wasn’t really room for the four of us in there. Wherever the money we’d paid was going, it wasn’t on real estate that was for sure.
It is always surprising to think just how much has changed over the last ten years. Nowadays, we go to appointments with iPads, iPhones, headphones and any electronic gadget we can get our hands on. It gets us through things relatively smoothly. Back then, a Nokia 5510 with a game of Snake didn’t quite cut it. Before those tools were available, medical appointments were a mission, trying to keep The Boy entertained long enough to allow his mum time to tell the consultant what the problem was.
Even if I do say so myself, I’ve become quite adept over the years at entertaining The Boy. In many ways it is no different to performing for punters in comedy clubs. When you first start, you’re unsure of your audience and, when you get it wrong, sometimes they just sit and stare at you. Other times they’re far more vocal in their dislike for what you’re doing. But the more you do it, the more you find your way. The laughs become more regular, the periods where you get it really wrong become rarer. The Boy, like all children, was one of the most candid audiences I’ve ever had. Children don’t bother with niceties or worry about coming across as rude if they don’t find you funny. There’s an honesty that’s by turns both refreshing and brutal. Nowadays, the tables have turned and The Boy makes me laugh just as much as I do him. We share the same sense of humour, we laugh at the same things. And hearing him laugh, a proper full-on laugh where he clutches his stomach and makes little shrieking noises as he struggles to catch his breath, are my favourite moments. They’re still the bits that will forever mean more than any standing ovation in London’s West End. Not that I’d know what that feels like, but you get the idea.
I have a hefty back catalogue of Desperate Dad’s Compendium of Childish Games to Entertain the Bored and Indifferent. Different games for different occasions that we’ve adapted, learnt and mastered between the two of us over the years to get us through sticky situations. Here are a couple of the old favourites, although I have a sneaking suspicion these may well fall in to the ‘you had to be there’ category. Let’s see.
If we’re outdoors and The Boy is getting tired and restless, there’s Park Keeper. All we need is some grass (that’s the Park bit). And an adult (that’s the Keeper). The Park Keeper is a grumpy man with a strange, pirate-like accent (OK, it’s the only one I can do). Park Keeper doesn’t like children on his grass. In fact, if the Keeper catches any children on the grass, he will shout, ‘GET OFF MY GRASS!’, chase the offender, pick them up and throw them over his shoulder and put them in the ‘tool shed’ (normally a drain cover they have to stand on). If playing with more than one child, they can tag each other to get out of the tool shed. If there is just one child playing, they can escape when the Park Keeper turns his back to do some weeding.
Master the basics of Park Keeper and you can then move on to Park Keeper Advanced. This involves various adaptations to the original version that The Boy has crafted over the years. Animals are now allowed on the grass or, more specifically, cows, chicken or sheep, as The Boy can make the noises for each of them. If the Park Keeper hears an animal on his grass, he will leave them to graze, but he needs to keep his wits about him because if one of the animals suddenly talks, then the Park Keeper, using his powers of deduction, will realize that it isn’t a real animal but is instead a small child pretending to be an animal. Park Keeper will stop in his tracks. He will stare at the animal, daring to make a sound, as little excited giggles emit from the animal’s mouth. Slowly, Park Keeper will scratch his head, and then utter the climactic words, ‘Wait-a-minute… Chickens-can’t-talk. You’re-not-a-chicken. You’re-a… child! GET OFF MY GRASS!’ And then it’s off to the tool shed, as in the original game.
Park Keeper is without doubt The Boy’s favourite game of all time. We’ve played it with cousins, on holidays, in the park and at school; anywhere a distraction has been needed, Park Keeper has been there.
I don’t mind telling you, I’m pretty proud of this game we created together that has shaped so many family outings and days out. Yet it’s only now that I’ve written it down for the first time that I see it is little more than picking my son up and putting him down again on a different spot. I don’t think Mattel will be bringing out the board game version just yet.
I’ve just told The Boy that I’ve included Park Keeper in the book. And all he said was, ‘What about Ride of Your Life?’ So, at his request, here we go with the second offering from Desperate Dad’s Compendium of Childish Games to Entertain the Bored and Indifferent. This particular game has been through many upgrades over the years to become the current market leader. Ladies and gentlemen, I present: Ride of Your Life!
For this game we will need to be indoors, preferably on the carpet. To prepare, clear an area of approximately ten foot square in the lounge. Remove any nearby breakables (fortunately enough, having lived with The Boy, these have been smashed some time before anyway). Now, to play. Dad lies flat on his front on the floor in the middle of the lounge. The Boy then sits on Dad’s back (over the years, the largely involuntary sound Dad makes as his chest is squashed against the floor by the weight of his child bearing down on him has grown louder and more involuntary). Then, the ride begins to speak in a gravelly voice (with a hint of pirate, naturally). It is Dad’s finest performance since he was thrown out of drama school all those years ago.
‘Welcome. To. Ride. Of. Your. Life. Prepare yourself for the ride of a lifetime. Warning, this ride is only suitable for riders over the age of eighteen. Prepare to be scared. Very scared.’
At this point Dad raises himself up so he’s now on his hands and knees with the child on his back. (If you’re really good, and this is something I’d only really recommend to advanced players, make mechanical sounds simultaneously.) The ride continues to speak. Maybe in a Richard Burton kind of voice. ‘You now must make your ride selection. Please state clearly your ride choice, from one to one hundred.’
The Boy always chooses ride six.
‘You have selected ride six. Ride six is the Tyrannosaurus Rex ride. Please fasten your seatbelt. The ride will begin in three seconds. Three… two… one…’ And then just bounce up and down, flinging the child around and around. Once they’ve been flung off, the ride comes to an end, and Dad flops back to lying on the floor again.
‘Welcome. To. Ride…’
In the multiplayer version there are variations for different cousins and friends. Ride forty-four is the Ben 10 ride, after the TV series. Ride seventeen the Barbie ride. Ride sixty-seven is Power Rangers. None of them ever went quite as fast as ride six though. Without even realizing it, Dad always seemed to work that bit harder for ride six.
Anyway, I digress too much. The consulting room which we were in that day, when we went to see the paediatrician, was small. Far too small for Ride of Your Life. And there was no patch of grass for Park Keeper either. Instead, I produced a picture book from my bag – old school. Reading a whole book from cover to cover could tide us over for at least as long as forty-seven seconds. The Boy loved books or, rather, he liked turning pages. No words, they just caused confusion. He had no interest whatsoever in them and their confusing shapes, and he certainly didn’t have time to sit around while I read them out loud. I’m not even sure he ever really liked the pictures. He just seemed to like the motion of turning the pages. Maybe it was a sensory thing of feeling the air across his face as the pages turned, calming, soothing. Maybe it was the familiarity of something from home in an unfamiliar place. Or maybe his dad is reading too much into the situation again and he just wanted to get to the end of the bloody book and out of the room away from the woman who is sitting too close and keeps talking and talking.
By the time the consultant came to exam
ine his legs, The Boy was in full-scale meltdown. As she reached down to try to manipulate them to get some sense of the difficulties he had, The Boy leant over and sank his teeth into her arm. Examination over.
‘Well, you need to sort out his behaviour before you do anything else,’ she said.
‘What about his legs?’ we asked, as we were bundled out of the door.
‘Knock-knees,’ she said without even looking up from the computer screen as she inputted her findings for the invoice. ‘He’ll grow out of it.’
CHAPTER THIRTEEN
The Best Days of Your Life
Once upon a time The Boy went to school with The Boy Who Couldn’t Sit Still. The Boy Who Couldn’t Sit Still didn’t really like school. In fact he hated it. Too many rules. Too much pressure to conform. He forever seemed to be on overdrive, as if he operated on a completely different wavelength to everyone else. His fists and his mouth would react to situations long before his brain even had time to engage.
The Boy Who Couldn’t Sit Still was half the size of the other children, I nicknamed him Dash, after the son in The Incredibles. And he was nothing short of incredible. I have never seen a child move so quickly, darting out of the classroom and on to the roof before anyone could react. He liked the roof. A lot. I’m not sure if it was the sense of danger or the fact that the teachers would never dare follow him up there. All I know is whenever I used to go and collect The Boy, The Boy Who Couldn’t Sit Still always appeared most content when he was out of reach of the world.
One day, I went into school and nine fire doors had been kicked in. Nine. Those thick glass panes with the wire inside. It was The Boy Who Couldn’t Sit Still. Four-foot-something of destruction had unleashed his anger with mankind. And it was probably because he didn’t want to wash his hands before lunch or queue up after break.
The Boy Who Couldn’t Sit Still’s mum would come to collect him. We crossed paths regularly – I’d have been phoned to collect my son for some misdemeanour or other and, as I pulled up into the car park, she’d be calling hers down from the roof. She was exhausted. He didn’t sleep at night, only for a couple of hours. She had nothing but my full admiration.
You see, The Boy Who Couldn’t Sit Still was diagnosed with ADHD. You know the one – that supposedly non-existent condition caused by crap parents that people snigger about. Well, I’m no expert but I remember when I worked in a respite care home for children with disabilities for a couple of years. Originally I worked there to help put The Boy and his problems into perspective. And then I stayed because I loved it. And the most challenging children, the ones who struggled to fit in the most, were often those whose diagnoses included ADHD. Yet still people mock it as a condition or say it’s just spoilt children with appalling parents.
So, in some ways The Boy and I are lucky. Autism is becoming more and more recognized. If you go on Facebook or Twitter, every other day seems to be Autism Day for one reason or another. And don’t get me wrong, I’m eternally grateful for that. But let’s spare a thought for those who have conditions that aren’t as well recognized. I was used to being labelled a Shit Parent before The Boy was diagnosed. His diagnosis helped deal with that a lot. I can’t imagine what it must be like when, even after diagnosis, the label sticks.
Before I get down off my soapbox, I’d just like to declare today ADHD Wednesday. Join The Boy Who Couldn’t Sit Still and shout it from the rooftops.
MY SON’S NOT RAINMAN BLOG
I can’t remember the exact moment the ‘Shitty Parent’ label was first applied. Its use certainly increased after The Boy started school.
It began as a whisper or an overheard conversation. Then it might be included in a discussion around ‘boundaries’ that also involved a plastic ‘caring’ smile. Periodically the term might be joined by the ‘Munchausen parent’ label, especially if I challenged or questioned decisions too much.
A few weeks ago I was attending a parenting course (I told you I was no expert) and if there was one consistent factor among those parents present, it was that all of us had been labelled the same thing at some point or other over the years. I’ve tried to shake it off but it always rears its head in one form or another – the constant nagging insinuation that I haven’t done enough, haven’t been enough. I’ve been too busy fooling around playing Park Keeper and Ride of Your Life or teaching The Boy to say, ‘Have a break, have a Kwik Krap,’ in a Liverpool accent when I should have been fighting the system, insisting on second opinions or banging down doors for intervention.
And so to school. By the time The Boy had been offered a place at the local primary school, to start in January, we had been through two nurseries and a childminder and sensed it wasn’t going to be an easy ride. There was a small private school nearby with just fifteen pupils to a class. It was half the price of most of the other private options. They would take him from September and we could see how he got on. The money was about the same as we were paying for the nursery and we could afford it between the two of us, couldn’t we? Couldn’t we? I’ll pack in the fags, that’ll help.
With all this talk of private medical consultations and schools, I don’t want to paint the picture of us as an affluent family throwing an endless amount of money at our problems. The truth is I was on my arse, financially, and I suspect we both were. Mum was paying for a house that was too big and I was paying for a flat I could ill afford. But we were also desperate. Desperate to try to find the right place for him. If he got off to the right start in a small school, we could put everything that had happened up to that point behind us. His dad had been unwell, his parents had separated, it was just the upheaval that was causing the difficulties. We’d manage. I bought a crappy old Rover 214 off eBay with a credit card so I could get him to school. Grandparents helped out with the uniform. This was it, we were off. An awfully big adventure. School.
Six weeks he lasted. Six long, painful weeks. We’d met the class teacher before and she was very sweet and kind, in her last year of teaching at the end of an illustrious career before retirement. Think Mrs Doubtfire without the five o’clock shadow. At the end of day one, she gave me a thumbs-up when I went to collect him. All had gone well – we’d forewarned her of the problems that might lie ahead, but she seemed confident. Almost happy, even.
Day two came around, another thumbs-up, although I thought I detected a slight downturn in the smile. Stop it, John. Everything is fine.
Day three, Mum collected him, there was no thumbs-up. Maybe she was just busy, distracted.
Day four, she didn’t make eye contact and by day five there was a note in the home-school diary: Can we have a quick meeting on Monday at home time, please?
The quick meeting involved the deputy head and the teacher. They asked how things had been at home. They’d been OK, we said. He was tired with being at school all day, but he was doing OK. How were things at school? There was a bit of a pause. They’d never had anyone like him before and they were unsure what to do. For one brief moment, I swelled with pride. An enigma, you say? But, no. The Boy refused to participate in anything. He screamed. He threw things. He bit people. He hit out. He disrupted the teaching for the others. He didn’t wait his turn. He refused to line up. He was unsteady on the stairs. The list went on. They were going to persevere, though. He’d been through some changes at home, maybe he’d settle in a couple of weeks. Perhaps he was bored being at the back of the class. They’d give him a seat at the front, near the teacher. Don’t worry, everything is fine.
One week later, another meeting. ‘We’ve requested an educational psychologist to visit from the local authority. We’re just waiting for them to confirm. We should hear in the next couple of weeks.’
We never got as far as meeting the educational psychologist, at least not on this occasion. It would be another year before we crossed her path. ‘We aren’t the right setting for him,’ they smiled kindly, at the end of yet another meeting. ‘I’m afraid we can’t meet his needs.’
It’s too pain
ful looking back to even try to consider what impact each and every exclusion had on The Boy. He did have difficulty making and maintaining friendships, there’s no doubt, but in each setting he certainly did have friends – maybe not in the conventional sense in those early days, maybe they were just allies to play alongside rather than with. But to him, I have no doubt, they were friends, people he liked who were continually removed from his life. And the worry was, this was a class of fifteen children. The next step was to go back to the local primary school with thirty-two children. How would they cope?
It was only November and as the new school wasn’t going to take him until January, we had to sort out childcare. By this point it had become obvious to me and Mum that both of us holding down full-time jobs was next to impossible. It wasn’t really a difficult decision to make – Mum had a career, a job she’d worked towards for many years; I, on the other hand, very much just had a job. And after the long period of sickness, I reckoned secretly they’d be only too happy to let me go. They were. I had a good employer and an amazing boss who came up with a redundancy package that meant I could get through the next few months at least. By now we’d implemented our shared care arrangement (ugh, how clinical does that sound?) and The Boy was spending every other week at my flat. I’d just have him in the daytime as well for a while. I could look for a new job once he settled at the next school, when things would be much calmer…
We got on fine in those couple of months, the two of us adapting to days of Park Keeper and Ride of Your Life. It felt good, after being unwell for so long, to be able to prove that I could do it, if not to anyone else then to myself. Parenting.
Before long, January came around. School number two and we weren’t even out of reception class. A new uniform, new friends to make but maybe, just maybe… a new start. Me and Mum went along to meet the new teacher, Miss A. I liked her the first moment I met her. She was newly qualified, straight out of teacher training and had a gentleness about her that I knew The Boy would love. Then I met her sidekick, a ferocious teaching assistant who terrified the life out of me. Good cop, bad cop. Maybe they’d be the perfect team.