Off and On Days

 The Off Day

It starts with the screaming. I have not opened my eyes yet and quite frankly, I don’t want to. For whatever reason, my son has woken up in a bad mood. This happens less frequently than it used to but when it does, the tone of the day is set. I know that in five seconds he will be in my bedroom making screaming demands that I am not equipped to cope with. What B needs is for me to leap out of bed, instantly alert and equipped to deal with whatever he needs, no matter how unreasonable. But I can’t, not this morning. I am tired and I need more than a few seconds to wake up. “I want a plaster!” he screams at me. I know that he does not have a cut or graze  anywhere on his body, it’s more likely to be an indentation on his skin which he’s decided needs some urgent medical attention.

I haul my tired body out of bed and suggest B uses the toilet. “Not the toilet! I want the computer!” Oh god, not the computer. Our laptop has become the bane of my life recently. B is utterly consumed by it, which in itself is not a problem, except that it creates as much trauma as it stops. I decide to be firm, mindful of the fact that, if he’s like this now, what sort of a handful is he going to be as he gets older? “Breakfast first, then computer.” I say. Quite a reasonable suggestion, I think. “No I want it now because you are an idiot!” Wow. I didn’t see that one coming. Quite a good sentence really; that speech and language therapy is really paying off. Still, I’d rather not be spoken to like that. What I should do is calmly take to him about the use of appropriate language, patience and compromise, but who am I kidding? The mood he is in, we are moments away from a meltdown, and I really can’t cope with one this morning.

B does not get the computer, but does grumble and wail his way through breakfast to the point where both he and I are in foul moods. Gone is my patient, objective, understanding approach to parenting. I am irritable, hassled and resentful. Can’t we, just for one day (a morning even), have a day off from autism? Can’t we have a day when I don’t have to concentrate on getting everything so specifically right? When the words I choose, the order I do things and the way I do them don’t have to be so carefully designed to placate my boy? Can’t we have a day that isn’t so specifically dictated by his needs?

On days like these I am a shockingly bad parent. I just can’t cope with his needs and become irritated by the slightest thing: the way his hands are constantly down his pants, his inability to stop messing with anything, his selective deafness, his refusal to stand still. And why must everything go in his mouth? He’s five years old in a week’s time, for god’s sake. A favourite habit of his at the moment is to scrape bits of plaster off the wall. It is as if he is picking at a scab on my body- he won’t leave it alone and it’s getting more raw and closer to being painful the more he does it. Son, meet the end of my tether. It’s going to be a long day.

By nine o’clock I have had enough of being stuck inside our four walls, so we take our bad mood to the park. I resentfully glare (from behind the safety of sunglasses) at the happy parents and their delightful children, having neurotypical fun. I drill into B that he cannot go on the big climbing frame and not to spin too fast on the roundabout. He immediately spins too fast on the roundabout and, what do you know, he’s on the floor, hurt. We decide to go for a walk. I tell B not to jump in the big puddle on the canal towpath. He complies, but does not realise that what I meant was “don’t jump in any puddle”. That’s not what I said, was it? Silly me. I should be clearer in my instructions.

For some reason, B has started stimming more regularly. Yes, it’s the return of the human beatbox. Is it his diet, his change in routine, his anxiety levels or something else which causes it? Who knows. Perhaps it is because it happens less frequently, of perhaps it’s because I am Crap Dad today, but I find this irritating and ask him repeatedly to stop. Which of course he can’t do. I know it’s an off day when the stares of other people bother me. What with his noises, the accidents and my on-the-edge display of bad parenting skills I feel we should just take our freak show home and hide ourselves away. God, I’m tired.

I think it’s as much emotional and mental tiredness as anything else. I should write a blog post entitled ‘Weird shit my son says to me’, but instead here’s just a taster of things he has said to me in the last couple of days: “What time is that nettle?”, “My hands are in G”, “Is fifteen a man?” These questions and statements make no more sense out of context than they do in the context they were said. The bizarre conversations I find myself in can be really taxing and mentally tiring sometimes. I often think I should have called this blog ‘Learning to Speak Autism’, because life with my son is like learning a new way of thinking. Forget what you know. This life has a different set of rules.

By the time my wife gets home from work, I am sullen and uncommunicative. Luckily for her, I escape to the pub almost immediately (my once-a-week, keep-me-sane indulgence). Bath and bedtime can be her job tonight. 

 The On Day

So, if that’s what an off day looks like, what about an on day? Which days qualify as good days? Well, in fact, most days are good days. So far, we’ve had a great summer, despite my initial misgivings. We’ve been to every park, woodland and play centre we could fit in, made videos, been to the seaside, played games, you name it. B has demonstrated excellent (for him) social skills, is completely potty trained and most importantly, is happy. Not all the time, but nearly. And that makes me happy too. I’d even go as far as saying I’ve been doing a good job.

The above post was written at the end of a particularly bad day and, deciding it was  unrepresentative of not just summer but our lives in general, I binned it. I’ve decided to resurrect it though, because as negative as it is, it’s also a very honest, raw and real account of how I sometimes feel. It may be uncomfortable for me to read back but it’s how I felt at the time. Mind you, I did edit out some bits.

We all get days like these, don’t we? It doesn’t make us bad people, it just makes us human. And if anything, reading about bad days just reminds me how many more good days there are. This week I saw one of those ‘life affirming’ slogans people post on sites such as Twitter. I usually have no time whatsoever for these platitudes, I find them gauche and patronising. This one though, stayed with me. It said, ‘Instead of waiting for the rain storm to pass, try dancing in the rain’ (or something like that). It’s corny, I know, but it’s reminded me to stay positive, because when you weigh things up, things are alright really. 

And it’s not even raining! Today, I can cope with the park. Let them stare. Whatever else they are thinking, I bet they also think, ‘what a joyful, beautiful child that is’.

Enjoy your summer everyone, and don’t let the off days get you down.

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