The Circle of Life

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.

IMG_5447
Any ideas?

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.

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Industrious little buggers

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.

And waited.

And waited.

And 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?’

‘Dunno.’

‘Are you happy you’re still here?’

‘Dunno.’

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.]

Asperger’s, Emotions and Parenthood

There is a persistent myth that people with Asperger’s Syndrome don’t feel emotions. It’s a myth because, if anything, I think many of us feel emotions more strongly than neurotypicals – it just doesn’t look like it.

I liken emotions in autism to a case of arrested development. Our emotional development suddenly stops while our bodies and cognitive abilities continue to grow. Unfortunately, it usually gets stuck on the ‘teenage’ setting, meaning we don’t understand what we feel, but we feel it all so intensely – the manic highs and the desperate lows – that we become overwhelmed and cease to function. Imagine being stuck as a hormonal fourteen-year-old your whole life – doesn’t bear thinking about, does it?

Since our emotions can confuse, unsettle, and even scare us, we embrace routines, predictability, systematic thinking and mental reasoning. We live in our minds and try to keep our nasty, unpleasant feelings pushed down deep where they can’t harm us. Many resort to antidepressants to keep our feelings at bay. And when our emotions do get the better of us, and we can’t cope, we seek out solitude and experience them alone. The emotionally unresponsive Aspie, approaching situations from the head and not the heart, is therefore in many ways a defence mechanism against our dangerous unbridled passions.

At least, that’s how I see it.

Yet even knowing this, I did wonder why I didn’t feel more when Izzie was born. The father across from us in the Transitional Care Unit was always crying when he was hugging his newborn. ‘I love him so much, I just love him so much,’ he kept saying, until even his missus told him he was being pathetic. I just couldn’t relate to those feelings.

I was told, before Izzie was born, that the first time you hold your baby in your arms it’s special, the love is instantaneous, you’re overwhelmed with emotion, and yada, yada, yada. I’ve mentioned before that when I first met my baby I was pretty dazed and distracted by the whole ordeal of ambulances, operating theatres and incubators and it took me a good four hours to really start feeling the love. But I never got that emotional rush, that powerful knock-you-on-your-ass thrill of being a parent.

Until now.

This is going to sound really saccharine and namby-pamby, but the past few days I’ve been almost overwhelmed by this incredible feeling of love. I feel like I want to cry all the time. When the baby sleeps I feel this surge of emotion well up in my chest, and I watch her for hours because she’s perfect in every way. When I went to work in the charity shop yesterday, I missed her horribly – I was only gone three hours. And when customers asked about her, I showed them a picture and could have cried with pride. I can’t believe she’s only been here nineteen weeks. It feels like she was always with us, just waiting to be born to make us all complete.

See? It’s so horribly sweet and sickening I want to disown myself. Part of me wonders if it’s because I’ve reduced my caffeine intake and started a diet to knock off the twenty pounds I’ve put on in the last nineteen weeks, mostly through chocolate, chocolate and more chocolate; another part wonders if it’s because I haven’t had a good night’s sleep for almost five months; whereas in truth, it’s probably because I’m more relaxed about being a dad these days. The fumbling, panicked hell of the first couple of months, and the laboured, mind-sapping slog of the next two, have given way to a quiet confidence and acceptance of the new routine. And that allows me to see her and enjoy her for what she really is: an angel in our midst.

Actually, that’s going a little too far. She’s suddenly discovered she can squeak like R2-D2, so every time she’s displeased with something, which is often, she treats us to a sound even dolphins wouldn’t enjoy. It’s a high-pitched, screeching whine, somewhere between a dial-up modem and that awful sound you used to get when you picked up the phone only to hear a fax machine on the other end (for those of you too young to remember dial-up modems and fax machines, ask your parents what they were, and know that I hate you).

But my emotional responses to the good things far outweigh my feelings towards the bad. In fact, right now the emotional impact of the good things is utterly disproportionate to their size. Izzie rolled from her back to her stomach for the first time yesterday and me and Lizzie were leaping around the room like idiots, and even though today she’s doing it like a pro, we still get excited every time. This morning when she was laughing unstoppably as I blew raspberries on her belly, I could have been in heaven. And a few minutes ago when I went to check on her in her cot and she opened her eyes, smiled at me, and went immediately back to sleep, I could have stayed in that moment forever.

I am choked with emotion at the moment. I am overwhelmed. But not that anyone would know it.

People with Asperger’s do feel emotions just as strongly or more so than ‘regular’ people. We just don’t make such a big song and dance about it, is all…

See what I mean? Perfect.
See what I mean? Perfect.

Going Out

I’m going out for an hour. Phone, keys, wallet: check. Watch so I always know the time. Oven off, windows shut, door closed and locked. Route planned? Of course. Painkillers and diarrhoea medication just in case. Excuses ready so if someone invites me somewhere I can politely decline. Topics of conversation prepared: lovely weather we’re having; have you heard about the situation in wherever; I’m a new dad so forgive the stutter, it’s just tiredness. St. Christopher medallion, rosary and crucifix because they make me feel better even though I’m not religious. Smooth pebble in my pocket so I have something tactile I can fiddle with if I get stressed. Hat to hide beneath, beard to hide behind. I don’t need to wear glasses per se but it’s another barrier against the world so on they go. Hard-soled shoes because they make a reassuringly grown-up clip-clop sound when I walk. Shirt with collar so my neck doesn’t burn and my hairy back doesn’t show. Long sleeves rolled up so I can adjust the length to cover my wrists if I feel vulnerable. A Sheriff’s badge in my pocket so I can pretend like I’m a cowboy, and a lawman, and a thousand times more confident than I actually am.

Right, I’m ready to go.

As someone with Asperger’s Syndrome, I find going out incredibly stressful. Even if I’ve done something a thousand times, and know somewhere like the back of my hand, I am always anxious about what might happen, and if I’ll be able to cope with it, and how long before I can return to the safety of my home. I don’t know exactly what it is that I’m afraid of – I’m pretty sure aliens aren’t going to choose the New Forest as the spearhead of their invasion of Earth – but it never gets any easier. No matter where I go, it’s like I’m heading to the dentist for root canal surgery, even if it’s to buy a chocolate bar. Which, to be honest, happens so often it increases the frequency of my dental visits.

Not that you’d know that I struggle – they don’t call it the ‘hidden disability’ for nothing. John Lennon said, ‘Act the way you want to be and soon you are the way you act.’ Wise words, utter rubbish. I always act like I know what I’m doing. I never do.

But I don’t allow it to stop me. My motto has always been, ‘Feel the fear and do it anyway.’ So I do. But if I had a choice, I’d be a recluse and never go out.

I don’t have a choice. I have a baby.

I have vowed not to let my social anxieties get in the way of me being a dad and a partner, and that means going to parenting classes and baby groups, meeting other parents with infants, going out for coffee with family and friends, seeing midwives and health visitors, picnics, parties, and the endless rushing about to find the unexpected necessities of child care: bepanthem, infacol, fenugreek, variflow teats, and all kinds of other weird and wonderful things I’d never heard of six weeks ago.

Unfortunately, since I compensate for my social deficits, convoluted thought processes and sensory abnormalities by using my intellect, going out exhausts me. To make things worse, since having a breakdown in late 2006 my brain shuts down when stressed, leaving me drowsy and unable to see my way out of a glass corridor. And in addition, having spent the past fifteen years on antidepressants – my entire adult life – I spend every day fighting against the lethargy that comes as a side-effect of chemically damping down your central nervous system. I therefore have to manage my energy use, pace myself to keep mind and body functional – or at least, as functional as they ever get – and try to take on one stressful task a day.

At least, that was how I used to manage. Now when I hit the wall, I just have to keep running. And going out now is so much harder.

We’re going out for an hour. Baby? Check. Is she wearing enough clothing? Probably, but we’ll bring extras in case she gets cold. A sun hat and woolly hat for the vagaries of the weather. A blanket. And a backup sleepsuit for if she soils herself. And another backup sleepsuit for if she soils the backup. Dummy, dummy case, spare dummy in case she loses her dummy. That’s her sorted.

When did she last feed? Just now? Better make up a bottle of sterilised water to take, even though she’s not due a feed for three hours. And maybe a second bottle for if we’re unaccountably delayed. And two lots of formula. Plus some infacol. And three muslins: you can never have too many muslins.

How about nappies? Three, just in case. So let’s take five. Changing mat, baby wipes, bottom cream, Vaseline, kitchen roll, nappy bags and hand sanitising gel. Enough to cope with the worst explosion she could possibly manage.

Let’s add one more nappy, just in case.

Car seat, travel system base, carrycot and sling, so we have a choice as to how to move her. And another blanket. Rain cover, insect net, parasol. Now are we ready?

Let’s take the puppy – collar, harness, lead, whistle, treats, poo bags, water, bowl. All of this is in addition to the worries I have about going out anyway. So as you can see, my mind is a whirl of worries and problems and contingencies.

But you’d never know it.

Now where did I put my keys?

The Autistic Elephant in the Room

When you look at your baby it’s impossible not to wonder about inheritance. My daughter has her mother’s eyes, ears, nose, lips, hair and fingers. The only thing she seems to have inherited from the Drew family’s genetic legacy is the bum chin that I don’t even have. And despite being less than a month old, she still has more hair than me.

Luckily, her behaviour is more equally shared between us: she slurps her milk like her daddy, spills it down herself like her mummy, and is as noisy and uncoordinated as the both of us. I imagine the incontinence must come from elsewhere.

When you have autism, and so does your partner, the question of what your children might inherit from you takes on additional weight. While Lizzie and I were trying for a baby we were often asked if we were worried our child might be autistic. Whilst there’s no convincing evidence that autism runs in families – around one in twenty people with autism have siblings on the spectrum – anecdotally, many of us with Asperger’s can see autistic traits in at least one of our parents. So what if we create an autistic child?

As an individual, autism infuses the whole of my being. It is who I am, and my ways of thinking and feeling are inseparable from my condition. The same is true of Lizzie. I love her in spite of her autism, and because of it. We would not have achieved the things we have, in the ways we have, if we did not have Asperger’s Syndrome.

So would I want Izzie to be autistic? That’s an impossible question to answer. If I say no, it does a disservice to all the people I know with autism who would not be who they are without it. If I say yes, I am setting her up for a lifelong struggle in addition to the regular trials and tribulations that come with being human. In truth, whether she has it or not, it doesn’t matter at all. Aspergic or neurotypical, she will be uniquely herself and I will love her just the same and be there to support her regardless.

And yet I keep watching her for signs. You can’t tell below six months, apparently, but I thought the other day, ‘She makes good eye contact, she can’t be autistic.’ We gave her a bath for the first time last week. She sat in silence until we wet her head when she absolutely screamed the house down; I cannot abide anybody touching my head. But she loved her second bath. It’s just too early to tell.

I think it’s only natural for parents to want to wrap their children in cotton wool. Knowing the life I have led, spending a quarter of a century bouncing from misdiagnosis to misdiagnosis, doped up to the eyeballs on various mood stabilising and antidepressant medications, and suffering several breakdowns to boot, my family didn’t want me to have children. There was too much risk the child would be autistic. How would I cope? What if Social Services took her away? What if, what if, what if?

Deep down, I probably don’t want Izzie to have autism: I know firsthand just how hard it can be. But as I said to my parents, by protecting me from the bad things in life they’re also protecting me from the good. If I didn’t have a child, my life would be easier, but emptier; avoiding the risk of things going wrong means you avoid every opportunity to better your situation. And I wouldn’t change having Izzie for the world.

I have to remember this going forward. As a parent, I’d rather Izzie had an easier life and thus didn’t have autism. But perhaps autism would open up opportunities for her that she’d never have without it. It is not for me to say who she ought to become. I just have to make sure that, whatever issues Izzie might face in her life, she knows that her dad is behind her all the way.