As parents of children with additional needs we're often accused of not letting our children grow up, of doing too much for them, keeping them forever young. I get that, and I'm certainly guilty of it. Maybe it's because The Boy isn't doing the things that other twelve year olds do that I forget sometimes how old he is. He isn't going out knocking on friends' doors to play or nipping to the shop to grab a pint of milk... apart from Doctor Who he's never sat through anything on TV broadcast after 7pm.
So many of the things I do without even realising. Habits formed over the years - so used to fetching drinks or helping put on shoes that it's become second nature, and it's only now writing it down I even realised I was still doing much of it. For a quarter of my lifetime I've been helping dress The Boy in the mornings - it's as much a part of my routine as brushing my teeth.
I know I'm not doing him any favours by helping too much. In terms of dressing, I've never really known how much he can't physically do because of his cerebral palsy, or how much he can't do because there's-no-need-as-someone-else-will-do-it-for-you. But if he's to have a stab at independent living when he's older then I need to start putting that in place now. It's something I should have done years ago, but his clothes are all labelled now in drawers for him to dress himself. I've agreed to still help with socks. There's a cupboard in the kitchen that has been emptied and labelled so it is now his cupboard, it contains drinks, cups, snacks and stuff for breakfast.
All this has come about because the other morning I asked him for a cuddle when he woke up, and I finally realised just how old he is. He used to always come in my bed in the mornings, and it's something that had stopped without me even realising... Don't get me wrong, his cuddles were never a delicate affair, they always involved just launching your whole bodyweight on the person, but that morning as he lumbered across the bedroom and then threw himself at me, it felt like I'd invited a plasterer called Keith to come and share my bed with me. Then when I couldn't find a matching pair of socks and I realised I could just borrow a pair of his as they're the same size, it was the final straw.
So this is it, day one of the new Independent Living manifesto. So far, The Boy has been up for three hours. I asked him when he was getting dressed, he has stated that he's leaving his onesie on all day. Twice he has asked for a drink, when I reminded him where his cupboard is, he has declared he isn't thirsty. The hunger strike is in full swing. I daren't even ask him when he's going to start on the plastering...
We met an old friend last week for lunch. She has two children under 3, and The Boy was in his element. He likes babies. Always has. He loves their tiny, fragile hands, loves placing his finger inside theirs and feeling them hold him tight. He looks up then, smiling. "The baby likes me", he says proudly.
Maybe it's the fact that babies can't talk that appeals to him. Nothing to misunderstand. No confusing list of emotions to try and work your way through, there's only ever two on display and they're both really easy to work out. If a baby isn't crying, then it's happy. Simple. No need to talk back either, no need to shape and form sounds into letters and words and sentences. Just make noises. Blow raspberries. Keep touching their nose. Making friends with a baby is easy.
Children do it all the time, communicate without words. As adults we're rubbish at it. We might have a couple of hand gestures up our sleeve for when a car pulls out in front of us, but apart from that and the universal mime of signing-the-chequebook-in-mid-air-when-asking-for-the-bill, we don't have much else in the repertoire.
Children have tag. Or tig, depending where you are in the world. For so long it was The Boy's gateway to other people. His very own Bridge to Terabithia. And the best bit of it all was that no words were required. He'd walk up to a child in a playground, tag them, and then run off. Some wouldn't get it, but that's okay. It's a bit like speed dating for children - just move on and tag the next person. Eventually someone will come after you, and once that other child turns to run after you to tag you back, that's it. You've cracked the code. Friends.
The friendships were often short-lived. Once the other child had tagged The Boy, the game was over. There would be no reciprocal chase. The Boy would head off to find someone else to do it all over again with. He always just wanted to be hunted. Maybe he felt important that way. Maybe he spent so long in his lifetime trying to fit in that someone chasing him made him feel wanted, made him feel like he belonged. Or maybe his dad should stop trying to romanticise a story about two kids legging it around a playground.
Whichever, tag has gone from the repertoire now. His legs tire too easily nowadays, even the toddlers can catch him too quickly. Mixing with others seems harder than ever - words have to be used, and so often it's easier to remain silent as each new encounter carries all the weight of being in the sixth form and finally asking out that girl in your class who you've had a crush on since Year 7.
But maybe one day he'll come to realise just how much his words will forever be his friend. I don't think he even knows sometimes just how good he is at using them. That day when his burger and chips arrived for lunch, it came with a salad on the side. He stared at the toxic greenery on his plate. Disturbingly, some of it was even touching the beige food. I went to remove it, but the pressure of being the big boy in the group meant he stopped me. Halfway through the meal as he's continually pushing the lettuce out of the way, he sighed frustratingly. "What's wrong?", I asked.
He didn't even look up. "I keep finding my chips in the bushes...".
Our weekend away in a caravan was a great break for both of us. Sometimes it takes going away for you to recognise the changes that go unnoticed day to day. Like when you you visit your mum who you haven't seen for four months and she points out straightaway that half a stone you thought you'd been quietly getting away with.
And so it was revisiting a caravan park we hadn't been to for a while. I'd forgotten the previous battles getting out of the swimming pool, the altercations in the play area and the screams echoing around the bowling alley. For the most part, this time they were gone. Once again The Boy seemed so much older than he ever has.
Although the change in behaviour is delightful to see, I'm still unsure if the cause of it is a good thing. It was always social interactions with other children that created the problems - on the dancefloor in the evening, across a ballpit... that's where the difficulties came. When this little boy so desperate to make friends and interact didn't have the first clue how to do any of it. While other parents sat chatting and drinking he was the child who you never dared take your eye off. Hearing a scream from the ballpit and seeing a distressed toddler fleeing the scene clutching their wound and then discovering the culprit alone inside... confused, scared and mystified having got it all wrong again.
But this time there were no social interactions to worry about. And that's the bit I'm not sure is a good thing. Yes, it made for a less stressful time. But was the lack of social interaction just his age, or because he's learnt that there's no point trying to get along with people because it's all just too hard and confusing? I'm not sure...
Either way, the two of us still had a great time, revisiting old haunts. We sat in the same seats we always sat in when we went for dinner, The Boy told me which machines were new and which had been moved in the arcades and he pointed out the caravan we stayed in three years ago even though it wasn't in its original spot and in a park of 300 every caravan looked exactly the same to me.
He had jobs to do this holiday too. Chores. He likes the responsibility, the sense of being in charge. "I'm getting a big boy now" became one of his favourite phrases as he turned the lights off or locked the caravan each time we went out (granted, the time we went out all day it might have been more secure if the door had actually been in the frame, but we'll let it go...).
And he's never seemed older than when we went for dinner on the Friday evening. Clutching his Top Trumps he even sat alone while I went to the bar to order. Two adult meals. The kids menu was always going to be out of bounds since my own flashbacks of sitting in a Little Chef with my dad trying to convince a waitress that the 15 year old and two 13 year olds sitting in front of her were 9 years of age. Maybe if my elder brother had shaven that morning we might have got away with it a bit more...
After dinner and Top Trumps (for the record I won), The Boy was ready to head back to the caravan. No bingo, no playing with other children this time. And as we went to leave from out of nowhere came the highlight of the holiday. "Now I'm a big boy", he said as he watched me putting the cards back in their case, "can I have my own packet of mints?"
Oh son, just writing that line makes me smile more than anything. I always carry a packet of mints with me. I'm not even sure why, it occurred to me as The Boy asked that it's something my dad always did too, especially in the latter years when he took to stopping smoking once a fortnight. Other families pass on heirlooms and relics across the generations. Ours pass on mints. And as we walked into the shop to buy the confectionery of choice that evening, it felt like his coming of age ceremony, his very own bar mitzvah.
And if you were there that night, you might well have witnessed the momentous occasion. At 7.23pm on Friday 28th March in a caravan park in South East England, a young man walked out of the Spar corner shop and silently slipped a packet of Trebor Extra Strong Mints into his pocket. Turning towards the setting sun, he headed for home with the caravan key in his hand, and the whole world at his feet.
We're back after our weekend in the caravan I mentioned a bit ago. We had a brilliant time, the sun shone as brightly as The Boy did, the 2p machines in the arcades offloaded their treasures on command, it was perfect in so many ways.
The time away gave me time to reflect on my last post (that's a complete lie, it's just something I've seen other people say, if I'm honest the time away gave me no time to do anything apart from follow the timetable). In case you haven't guessed by now I have an ever so slight tendency to overthink things sometimes... I've read all the brilliant comments people have added here and on facebook, and spoken at length with others about it, not least The Boy. And I suppose the conclusion is that for the time being we'll continue to share those bits of our lives that feel right sharing.
I think this is the crux of my concerns - I want to be a Dad first, and a blogger/comedian second. I wanted to post my doubts because it had almost got to a stage where something happened and my first thought wouldn't be to enjoy and savour it, it would be "Oh, I must write a blog about that...". I needed to take a step back and remind myself what (or who) this is all about. Performing the show still raises many questions and doubts, so we'll mark that one down as a work-in-progress and I shall go away and over-think it some more.
Anyway, this blog today has been made much easier to write by an email I received earlier this week. Its timing couldn't have been more perfect, and if anything it was a reminder about why sharing parts of our story has been such a positive thing. There's a lovely family I have been in touch with as a result of writing here, and although I've met mum and dad, the children had never met... until our trip away. This is the email:
"My son’s not Rainman either….
I met a man somewhere down on the South Coast, he and his lad were loitering near the crazy golf centre. His lad was in a wheelchair having exhausted himself at the arcades apparently.
The man I met writes a blog, we had arranged to meet up having got to know each other at some events over the last year or so. His The Boy was going to meet my The Boy for the first time, would they get on, would they acknowledge each other, would they give a flying whatever that they were being forced to meet. When all they really have in common is a couple of fathers who are not sure they are coping terribly well with being parents.
4 hours later, after innumerable cups of coffee, trips to arcades, games of Top Trumps and looks of bewilderment, it was decided, by the two The Boys, that their fathers were really rather odd, very embarrassing, prone to laughing at things that aren’t funny and quite good for persuading to buy sweets and chocolate. And cake. And hot chocolate. And lemonade.
It was a lovely afternoon, spent with lovely people who sort of get that it is not the dark days that should colour our lives, it is those days when some force takes control and allows us to glimpse into the beautiful, beautiful world of our The Boys.
But one thing about John’s Blog and his rather beautiful turn of phrase I must take issue with. He doesn’t do his The Boy enough justice, he is funnier, he is kinder and he is more mischievous than he is given credit for.
And the thing that sealed the day, The Boy phoning to thank us for a lovely day. John be proud, as I believe he is of you.
Having read this again, I would like to clarify that this wasn’t some kind of blind date, Cilla was nowhere to be seen and we were chaperoned at all times by my wife.
Good times with good people. Mark writes a gardening blog here. I can't tell you if it's any good or not, I don't have a garden.
This blog is about bringing up The Boy. He's 12 years old and autistic. It's written by The Dad. It's my words, my view. Other people will think differently and have different opinions. Good.