A night with a couple of hours of broken sleep is normal when you’re a parent, and while unpleasant, more than bearable.
What’s slightly harder is when that night of broken sleep is followed by a day of doctors and hospitals, a night with no sleep, a day helping prepare for the wedding, another night of no sleep, and another day preparing for the wedding, and then a wedding rehearsal.
This evening, after bathing the baby at Lizzie’s dad’s farm, I had to get someone to take the baby off me before I collapsed. Possibly because, looking after Izzie around the clock for four days, trying to get her to eat, keep her fluids up and soothe her, I was not only in desperate need of sleep, I had neglected eating or drinking myself.
Lizzie, of course, has been understandably preoccupied with arrangements for Saturday, leaving the brunt to unfortunately fall upon me. Izzie is very grizzly, has a fluctuating temperature, and chronic diarrhoea – all a result of her gastroenteritis. Worse, since Wednesday’s stint in the Children’s Unit, she has developed a phobia of syringes. Every dose of Calpol or Ibuprofen or gripe water is met with stubborn resistance and followed by two hours of misery.
As a result of the experience of hospitals, she has become remarkably clingy. I have never been hugged so hard. If I so much as lean forward an inch, this vice-like grip tightens around my shoulders and she starts to scream.
So she will only sleep on me.
That’s great if you’re able to sleep with a baby snoring on your chest. If you can’t, after a few days it seems to result in a spinning head, pink eyes, trembling hands, a stiff neck, an aching back, a sore chest, intermittent breathlessness, and a face that twitches as though attached to a whole mesh of electrical wire. All I need now is a rash that doesn’t disappear when a glass is pressed over it, and I’ll be really worried!
Tonight, for the second night in a year, I am sans baby. The night before my wedding. I was always meant to spend it alone, but after my near-fainting episode, they sent me home early. And instead of luxuriating in my aloneness or living it up, or at the very least working on my speech, I can’t open my left eye, my head feels like someone is sawing through it with a spoon, and no matter how hard I try, I’m too tired to fall asleep!
In all honesty, I’m a tad worried about my little one. But there are fifteen people there, including her mum, aunt, great-aunt, grandmother and grandfather. It’s an important lesson to learn: I’m not invincible and I can’t do it all alone, despite how much I think I can. I guess that’s what marriage is all about.
And on that note, I’d better at least try to get some sleep, or they’ll have to Photoshop my eyes open in the pictures!
They say that life is what happens while you’re making other plans, and they’re definitely not wrong. I had this week planned out in fine detail. I have to: I’m getting married on Saturday. So there is an awful lot to do and I couldn’t afford any hiccups.
You can guess where this is going.
When you’re a dad, hiccups go with the territory. I expected a few things to crop up. I hadn’t imagined that life, death, birth, suicide and viral gastroenteritis would feature quite so prominently, however.
It started Monday. I was already up against it as I had my stag-do that night, when, driving home along a country lane, I saw a ball of white fluff wandering down the middle of the road. Since it’s a busy road and people drive like maniacs, I stopped to move it out of traffic, when I realised it was something I really couldn’t leave to get run over.
There were no trees about – just bushes – and those on the other side of a ditch, and if I left it in a random hedge there was no way it’d survive. Now I know you’re supposed to leave balls of fluff alone, but these were extenuating circumstances. So I did what I thought was best – I picked it up and I put it in my car.
I had no clue what it was, but given it had a hooked beak and long, sharp talons, I had a fairly good guess.
Since the last bird of prey I tried to rescue didn’t make it, I was determined that this one would. Luckily a few miles down the road is an owl, raptor and reptile sanctuary, so I took it there. Turns out it was a barn owl chick, far too young to be out of the nest. They’re going to get him well and then find a nest with similar aged chicks and slip him in, to be raised by a surrogate mother back in the wild.
My good deed for Monday was done – but it ate up a massive chunk of the day.
On Tuesday, I did a few wedding-related things like writing my groom’s speech, but I have to confess to being distracted all day by the wrens nesting two feet outside the back door. Every three or four minutes they return to the box with an insect, whereuopon three very hungry chicks lean chirping out of the hole. I guess I don’t have to watch them, but it’s hard not to when they’re so busy from sun up – around half-four in the morning – right the way through to after sunset – gone nine-thirty at night.
Part of the reason I couldn’t look away was this whole parenting thing. I couldn’t help feeling a kinship with these tiny little birds looking after their kids, sacrificing their time and energy to care for their young ones around the clock. I admired them their energy, and felt it needed to be acknowledged, if only through my observation. And if I’m honest, I wondered if I’d be able to cope if I had to expend so much effort on my child as they did on theirs.
The answer wasn’t long in coming.
I put the baby to bed as usual around seven Tuesday night. At ten came the most horrible sound, and when I rushed in there I found little Izzie soaked in vomit. I picked her up and, my god, she was burning up! With a temperature of 38.6, I gave her some Calpol, two hours of TLC, got her to bed shortly after midnight, and checked on her every two hours.
By six o’clock this morning she was 39.1 degrees and very unhappy. It’s awful, knowing she’s unwell but unable to do much about it. So many thoughts and possibilities run through your mind, and after so few hours sleep, you jump to worst case scenarios.
I spoke to a doctor at 8.30, saw her at 11, when Izzie was 39.3, and was sent straight to the hospital so she could be assessed. And that was just the start of six hours of shenanigans.
Izzie was the most distressed I’ve ever seen her, and Lizzie almost as bad. As the stable presence in their lives, I have to take it in my stride, act confident and calm, reassure them that everything’s okay and we’ll deal with whatever happens, even though inside I’m just as churned up. Watching Izzie get poked and prodded and howl like a banshee must rank up there as one of the least comfortable experiences of my life.
Well, worse was to come. They needed a urine sample to test, and despite this being 2016, guess how you get a urine sample from a baby? You sit the over-hot, kicking, squirming, screaming sweetie on your partner’s lap on a waterproof sheet, crouch between their legs with a plastic tub, and get ready to catch whatever comes out.
I always figured that since they’re incontinent, babies drip-drip-dripped, little and often. Nope. They pee just like normal people – when they need to.
So we waited.
For an hour and three-quarters. Crouched, ready to jump into action in a split second to catch that pee! And true to form, Izzie waited for the doctor to arrive and the precise moment I looked away to make her entrance to the stage. In the event, I got it all over my hands, but managed to salvage enough to test.
Meanwhile, doctors and nurses and mothers and boyfriends came to visit the girl in the bed next to us, a teenager who took an overdose this morning, and, by dint of still being classed as a child, was placed in a bay surrounded by screaming babies.
It’s impossible not to overhear things in a hospital – the curtains aren’t exactly soundproof, after all.
‘Did you intend to kill yourself?’
‘Are you happy you’re still here?’
She gave her mother a pretty hard time, lots of effing and blinding. And as a dad, I thought how odd it was that fourteen years earlier, she’d have been like Izzie, a little girl, an innocent, unsullied, perfect creature. I can’t comprehend how I would feel if in fourteen years time it’s Izzie in that bed following a suicide attempt, telling me to ‘shut up, I just don’t care, leave me alone, I don’t give a f**k.’
The stark contrast really struck me, two girls in two beds, separated by nothing more than a curtain and a few years; one so simple and dependent and full of the joys of spring, the other so complex and cynical and utterly jaded. And I want to cling to Izzie and stop her growing up, retain her innocence at any cost, arrest the passage of time.
But I can’t.
In one bed, we’re planning our futures together; in the other, she could have been dead. She might still be – it was paracetamol and they were waiting to see how much damage she’d done to her organs.
The thing is, in my life I’ve been suicidal. I’ve self-harmed. I’ve always been a little bit crazy. My teens are a blur of high emotions and antidepressants, hidden knives and hidden scars. I’m not always rational. People tell me I’ve said things, done things, and I have no recollection whatsoever. At times of high stress I become paranoid that people can hear my thoughts. I am the girl in the bed beyond the curtain – at least, I was. But I got through it. Saved, as it were, by the love of my family, a stubborn unwillingness to give in, and by the miracle that is my daughter.
I don’t ever want her to grow up like me. Stay this side of the curtain, sweetheart.
Long story short, after I wiped the piss off my hands, we discovered she didn’t have a UTI, and they diagnosed it as viral gastroenteritis. Eventually we were allowed to go home, after eight hours away.
Things have calmed a little this evening – Lizzie and Izzie are both snoring, but the latter wakes up every ten minutes, has a little cry, and drops back off. I’m monitoring temperatures, wiping up diarrhoea, and preparing for another night of broken sleep. In the test of whether I’m as good a parent as a wren, I think I’ve passed.
All day I’ve acted tough. Now the world has gone to sleep I can be honest. I feel tearful. Seeing Izzie going through all that, not knowing what was wrong – I was more scared than anyone can imagine. Because Izzie is my world.
So much has happened this week and it’s only Wednesday! If tomorrow is anything like today, I don’t know what I’ll do. Did I mention I’m getting married in three days?
[EDIT: I have just discovered from the Barn Owl Trust that I did exactly the right thing. It says finding barn owl chicks out of the nest before they can fly is not normal, they are only fed in the nest and parents will ignore one on the ground and leave it to starve to death, they have very little sense of smell and will not reject it if you handle it, and leaving it well alone is usually not the appropriate course of action. On the other hand, if it was a tawny owl chick, you should leave it as it is normal for chicks to be out of the nest before they can fly and parents will feed them anywhere – even on the ground. Barn owl chick = intervene. Tawny owl chick = leave alone. Yay me.]
When you have AS, you don’t process information the same as other people. We have rigid, systematic ways of thinking that give us excellent rote memory, but that hinder our ability to combine different pieces of data to create a larger whole or easily shift from one thought sequence to another. Sounds complex? Let me explain.
If you imagine each sensory input, thought or piece of knowledge as a sheet of paper, and the autistic brain as a giant filing cabinet, it goes some way to understanding how we operate. Every sheet of paper needs to be analysed, categorised, related to other sheets of paper and then filed in its relevant folder in the relevant drawer before we are done with it. It seems great in theory, but in practice? Bloody exhausting.
Processing information in this manner takes both time and huge expenditure of mental energy. Sometimes people with AS can seem a little slow when you’re talking to them, but they’re not – they’re just busily interpreting all those little nuances of social interaction that neurotypicals do automatically. Sometimes you can say something to an Aspie, and it’ll be minutes, hours or even days before they get back to you, because that’s how long it can take to work through everything you’ve said, figure out what it all means, and create an appropriate response. And if you give me a list of instructions, you can bet your bottom dollar that I’ll focus so intently on the first step to make sure I understand it that I’ll switch off from everything you say thereafter.
This is because we can only think about one thing at a time. With a mind like a filing cabinet, every detail is separated and stored in an individual folder. If we’re thinking in a certain way about a certain thing – say, file Z284 in Drawer C (the book we’re reading) – then how on earth can we suddenly start thinking about something else – file B827 in Drawer F (the gas bill), for example? So we focus on the first file, and the others cease to exist – at least until they come knocking on the door.
And when we try to do too many things at once, or switch from thinking about one thing to thinking about another, we often screw up our whole filing system. We open a drawer, take out a file, study the page; then we open another drawer, take out another file, look at it; open a third; and before we know it, all the drawers are open, we’ve got files all over the place, we can’t work out what goes where and can’t put anything away or let anything go, our thoughts spiral round and round and, unless we manage to stop this process, we go into what is affectionately called an ‘autistic meltdown’. That’s what it’s like having a filing cabinet for a brain (and that’s without mentioning how, because our thoughts are separated into different files, we focus on the details and miss the ‘bigger picture’ – we see trees instead of forests – but that is by the by).
Anyway, ‘what does all of this have to do with babies?’ I hear you ask. Simple. My house is a tip.
Actually, that’s putting it mildly. My house is, at current, a shithole. I know this because both of Lizzie’s parents have separately described it as a ‘disgrace’ and said that they would be embarrassed to have people over. Ouch!
To be fair, I don’t really notice the mess most of the time. We’ve been blaming it on having a baby – how can anyone have a baby and a tidy house? – but I’ve stumbled unannounced into two houses in the past fortnight who have kids the same age as Izzie, and their houses are freaking immaculate: toys put away, the sideboards clear of stained coffee mugs, no dishes in the sink, clothes hung up instead of strewn over the backs of chairs, everything in its place. Where in God’s name do they find the time or the energy to do that? What makes us so different?
The answer, which has been eluding me for so long, is horrifyingly obvious: they don’t have autism; we do.
To have a tidy house and a baby, you have to be able to multitask. You have to be able to keep one eye, or part of your brain, on the baby and the other on the washing, the ironing, the cleaning. And that’s not something I’m capable of doing.
When I look after the baby, I look after the baby. That’s my job, that’s my focus, and that’s what I do. When I tidy, I tidy. I can’t do both at the same time. So I leave the tidying to the evening, after Izzie’s gone to bed, by which time I’m exhausted and tend to flop down on the sofa or, to be entirely honest, obsess over random things like making lists of all the WWE wrestlers from my teens who are now dead, or researching the million-and-one rebuttals to 9/11 conspiracy theories, or writing 10,000 word treatises on why Jack the Ripper was not Arthur Sickert (take that, Patricia Cornwell!) – you know, useful, productive things like that.
Raising a baby as a person with autism is surprisingly mentally taxing. There is so much information to process, so many sensory inputs and new experiences to file away, my brain is constantly distracted. I used to go to bed between midnight and two every night, getting around six hours sleep – now, I’m lucky to be able to function past ten. That’s how draining it is.
I’m not entirely sure how to rectify this situation. I mean, the house is mostly clean – it gets hoovered, the sides are anti-bacced and we’re still sterilising the baby’s bottles; bleach down the toilets, dog poo picked up, nappy bin emptied regularly, rubbish put out – it’s just got stuff everywhere. And until I can figure out a way of thinking about two things at once without tying my thoughts into knots, that’s the way it’s going to remain.