Five Months of Autistic Parenting, Part 1

Five months ago I started this blog with the question: what happens when a guy and a girl with Asperger’s Syndrome have a baby? I can answer that very simply: we have a gosh-darned gorgeous daughter. Beautiful, inquisitive, intelligent, happy and healthy. And it’s not just me that says that – health visitors, midwives, nurses, doctors, childcare specialists, social workers and swimming teachers all agree, and they have no reason to suck up to me so it must be true. Yay.

But of course, that’s only a fraction of the answer. How has our autism affected our parenting thus far? How has it affected our relationship? How have we compensated for or overcome our foibles and idiosyncrasies? What have we learned? These are the real meat of the answer, and I’ll do my best to cook them for you.

In this post, I’ll cover the small, humorous parts of autistic parenting. The next post will detail the larger, more serious problems of parenting with Asperger’s. So hang on in there if that’s what you’re looking for.

Firstly, I have to mention the mobile over Izzie’s cot because it drives me freaking insane. Why? Because you have to turn the mechanism ten-and-a-half times to wind it up fully. What kind of sadist designed that? Why can’t it be ten? Why ten-and-a-half? I’d even accept it if it went up to eleven (insert This Is Spinal Tap reference here). But leaving it with a half is plain belligerence. It’s practically warmongering. (For future designers, I would accept fifteen as well – multiples of five are always good).

This same sadist also made it run out of steam one solitary note from the end of its repetitive tune. Yes, one note. I lie awake listening to that simple tune on the baby monitor, round and round, knowing that soon it’ll stop short and leave me with a horrible sense of incompleteness. It’s like watching a firework shoot up into the sky and then splutter out without so much as a ‘fzzzzt‘.

The play mat bugs me too. All the tunes it plays are almost nursery rhymes, but not quite. Whether for copyright reasons or simple hatred of children, they’ve changed the last line of each one so you’re singing along and suddenly – boom – you can’t finish it! So Incy Wincy Spider never gets to climb up the spout again, the little boy who lives down the drain never gets his bag of black wool, and Frere Jacques doesn’t end with a ding, dang, dong. So annoying.

The monitor is a pain in the ass too. The first sound the baby makes switches it on, and then you’re treated to ten seconds of the microphone trying to pick up whatever white noise it can find. So, if the baby coughs, you don’t hear her cough – you hear the monitor come on, ten seconds of humming, buzzing static, and then it switches off again. She coughs again, the microphone comes back on. So you lie in bed listening to the monitor switching on and off without once hearing any baby noises. It drives me crazy.

But infinitely worse is when you can hear noise through it, specifically screaming. Izzie screams so loud, I imagine the neighbours wake up thinking, ‘Whose bloody baby is that?’ And when I say ‘neighbours’, I mean ‘the people in the next village’. It’s bad because I can hear Izzie screaming through the wall and I can hear her screaming in my ear through the monitor, so I get it in stereo.

And if that wasn’t bad enough, there’s a slight lag between the microphone picking up the sound and the speaker relaying it, so the screams are slightly out of sync. If you want to make a noise so unholy it could summon the devil, come to my bedroom around eight pm. Bring cake.

In truth, I’m not sure whether it’s my autism that makes these things bug me or if it would bug every parent. Certainly, my autism makes me pedantic and pernickety – I like completion, efficiency, accuracy, things working as they should and doing so logically – and whoever designs these things for babies seems to enjoy torturing parents like me. Grrrr.

Probably more directly related to autism is my dislike of slimy stuff. Autism is often accompanied by sensory issues, including a strong liking or disliking of particular textures, temperatures, smells, sights and sounds. One Easter at Sunday School when I was about eight we had to do egg-blowing, and I absolutely hated it – disgusting, squidgy raw egg dripping out the hole in the bottom of the shell. Yuck. The teacher lady, knowing I didn’t like mud, grass stains, getting dirty, told me I wasn’t like other boys – in hindsight she might have been suggesting I was gay. But she was right – I cannot stand slimy stuff.

Which means changing Izzie’s poopy nappies, especially when the crap has spilled out and soaked into her vest and top and trousers and I have to slip it off over her head and then there’s faeces in her hair, is particularly difficult. And when I get it on my hands I run to the bathroom screaming to wash my skin in scalding water with antibacterial soap and a wire brush.

Worse, though, is feeding the baby her solids. I’m not sure why they’re referred to as solids because, as everybody knows, baby food is sludge. Watery, slimy, smelly sludge that stains everything it comes into contact with.

Since babies learn about the world by watching our reactions, I’ve been told we have to act as though their food tastes lovely and there’s nothing we’d like to be doing more than feeding them this gunk, or else it might put them off. Now imagine you’re someone who is horrified by the feeling of sludge and who squeals if he gets mud on his Wellington boots. Yeah.

I spoon that gloopy, dripping, phlegm-like goo into Izzie’s mouth, force a smile onto my mouth as she dribbles it onto her hands then smears it over her face, try not to react as she grabs my forearm with her cold, slimy fingers and rubs that delightful substance into my skin. Mealtimes have become my least favourite activity by far – I’d rather clean out the cat litter, and that’s saying something.

And this fakery of enjoyment leads me onto the final and most profound observation on autistic parenting in this first part of the post. As someone with Asperger’s Syndrome, my life is one giant performance. My body language, facial expressions and tone of voice are not natural, but the result of study and conscious manipulation. I project confidence, contentment and cheerfulness when in truth I am filled with hidden insecurities and neuroses, discontentment and confusion, and I spend my life battling against my thoughts with a violence that nobody could ever guess at. How does this relate to parenting?

Since our babies look to us to learn how they’re supposed to react to new situations – should they be afraid, relaxed, excited, upset? – we have to act as though we know what we’re doing and everything’s fine and dandy. Well, having had a lifetime of practice hiding (masking) my problems, I’m an expert at making Izzie feel safe and secure. I might be terrified of setting foot outside my own front door, but Izzie will never see that, so she won’t grow up infected by my fear of the outside world.

So my autism is really a double-edged sword. Without it, I probably wouldn’t be a reclusive, hysterical pillock; with it, I’m able to pretend that I’m not a reclusive, hysterical pillock. What kind of parent does this make me?

The best that I can be.

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Are You Raising a Demon Baby?

A handy checklist to see if you are raising the spawn of Satan. Has your five-months-and-one-day-old baby:

  1. Kicked you in the nuts?
  2. Kicked you in the chin?
  3. Twisted your beard until you screamed?
  4. Backhanded you across the mouth?
  5. Backhanded you in the nose?
  6. Punched you in the Adam’s Apple?
  7. Scratched your neck?
  8. Scratched your forehead?
  9. Used your ears as leverage to pull herself to her feet?
  10. Crushed your bottom lip in her meaty little hand while trying to ram her other fist down your throat?
  11. Shoved her fingers up your nostrils?
  12. Pulled off your glasses?
  13. Palm punched you repeatedly in the eyes?
  14. Tried to bite your head?
  15. Screamed when you tried to feed her?
  16. Screamed when you hugged her?
  17. Screamed when you put her down?
  18. Screamed on her front?
  19. Screamed on her back?
  20. Screamed non-stop right in your face?
  21. Thrown up pureed apple and banana down your shirt?
  22. Thrown up pureed apple and banana down your vest?
  23. Thrown up pureed apple and banana down your bare chest?
  24. Pulled out a handful of chest hair?
  25. Tugged on your armpit hair until your eyes watered?
  26. Spat on you?
  27. Sneezed on you?
  28. Done a pile of liquid yellow-green poo thirty seconds after you changed her nappy?
  29. Laughed uproariously as you tried to change her again while she kicked you and hit you?
  30. Shrieked like a banshee as you tried to put her sleepsuit back on while she kicked you and hit you?
  31. Stood up unassisted against the sofa for the first time?
  32. All of the above in the space of two hours this evening?

If the answer to all the above questions is yes, you may very well be raising the offspring of Beelzebub a.k.a. a teething baby.

To assist parents like us, I have set up a support group named Demon Dads Anonymous. Call me on 1-800-I-need-an-exorcist and we can help each other! Or we use more teething gel, yes, more teething gel, now.

The World’s Worst Word

Top of the list of words that should be expunged from the English language is ‘should’. Unfortunately, in order to make that statement, I’ve had to use it, so perhaps banning it isn’t the right answer. To rephrase, then: I would greatly appreciate it if the word ‘should’ was avoided in any conversation about life, lifestyle, parenting, babies, child development, behaviour and relationships, because ‘should’ is the world’s worst word.

Implicit, and often explicit, within the word ‘should’ is that there is only one way of doing things, the right way, and therefore if people use that word at you, they are telling you that you are not only falling short of the ideal, you are doing things wrong. ‘You should leave her to cry,’ means: ‘A proper parent leaves their child to cry. This is the only way to respond to a baby that cries. By not leaving her to cry, you are not being a proper parent. You suck.’

Okay, maybe that’s my autism reading too much into it, but how much nicer would that same sentence be if you replaced ‘should’ with ‘could’? ‘You could leave her to cry,’ means: ‘there are many options available to parents, of which this is just one. I leave it to you to make the decision as to which option is right for your family.’ See? Much better.

‘Should’ also fills your life with pressure. ‘She should be drinking five bottles a day.’ Great, but what if she only wants four? Or those days that she wants six? What then? Should we be forcing milk into her, denying her it when she’s hungry? Instead of following your instincts and adapting to reality, you feel an obligation to try to squeeze reality into a ‘should’-shaped hole, and that doesn’t make life easy for anyone.

That horrible imperative also changes the power relationship between you and whichever person said it. ‘You should change the brand of milk she drinks,’ is another way of saying, ‘I don’t respect you. There is no point in us having a conversation as adults because you are a child who cannot be trusted to make decisions. Therefore, I must fill the role of your parent and tell you exactly what to do. Switch to Aptamil.’

‘But Aptamil and Cow & Gate are the same company with different coloured packaging.’

‘Shut up, imbecile. You are incapable of deciding what is best for your baby so I will take that choice away from you. You are the hydrant and I am the dog.’

You see what I’m saying? ‘Could’ means that we are equals, you are making a suggestion and you respect my ability to sort through the conflicting information and select an appropriate course of action. ‘Should’, on the other hand, means you’re the expert and I’m the dunce, and I should do what you say because you’re the Man, and I’m the poop he just stepped in.

So next time you’re giving someone advice, think about turning that first phoneme from a ‘sh’ to a ‘c’, unless you really are that arrogant that you think you know the best way to raise my baby.

Rant over.

Babies aren’t balls of clay

While walking the dog round the forest yesterday, I met a French lady who peered at the 16-odd pounds of baby strapped to my chest and asked me how old she was.

‘Just coming up to five months,’ I replied.

‘They grow up so fast,’ she said, and then added, ‘Make sure she grows up strong. There aren’t enough strong women in this world.’

Since I had no idea how to respond to that, I said, ‘I will. She’ll be a strong woman. She’ll be a Nobel Prize winner.’

‘Good,’ she said. ‘We need more strong women. Promise me you’ll make her strong.’

‘I will,’ I repeated, as though solemnly undertaking a blood oath.

And then she was gone.

It was all a bit surreal, actually, particularly as her dog seemed to be a cross between a black lab and a hell hound, all teeth and drool and mad staring eyes. But for the rest of the walk, her imperative was bouncing around my head – make her strong, make her strong – and my agreement to do it.

But how exactly do you make a girl into a strong woman? Bathe her in ice water and dry her with sandpaper? Teach her to toy with men’s hearts and crush them underfoot like Miss Havisham’s pet Estella? Sure, I plan on taking her to karate lessons as soon as she’s old enough so she can defend herself, but other than that, I’m kind of at a loss as to how I’m meant to achieve this. And how much power over Izzie’s personality am I meant to have?

Back in the early part of the twentieth century, Dr John Watson, a behavioural psychologist and not Sherlock Holmes’ fictional biographer, said something along the lines of: ‘give me a dozen babies and I’ll make them into lawyers, doctors, artists, thieves or beggars depending on how I raise them and in spite of any natural proclivities they might have.’ Now, we know, and have known for a long time, that this is a pile of hooey – genetics and individual differences count equally as much as environmental factors in how we turn out – but people still seem to think that as parents we can control the development of our children.

My mother, for example – at the age of 27, while working for the police, I had a breakdown. Ten years later, my brother has just had a form of burn out after his wife left him and took the kids. So my mum is all, ‘Two kids, two breakdowns, how bad a mother am I? I should have made you stronger.’

So I asked her the same question: how, exactly, should she have made us stronger? Besides which, she tried – my parents used to send me to boys camp over the summer to build my character, toughen me up and force me to become more sociable. I found every summer a form of cruel and unusual punishment; my brother, on the other hand, was in his element. While I wandered down to the village every afternoon to lock myself in a toilet cubicle and cry, he thrived. While I was bookish and introverted, he was sociable and outgoing; while I was moody and introspective, he was laid back and confident. We were raised in the same house by the same parents and given the same guidance, moral framework and experiences, but were completely different people from the start. And the fact we both had breakdowns is plain bad luck, not a fault in our upbringing.

Because kids are not balls of clay that can be moulded into whatever we want – they’re people with their own thoughts, ideas, desires and abilities. Izzie already has a personality – two parts wilfulness, one part stubbornness, mixed with an insatiable curiosity and a happy disposition – and that’s without any input from me.

This is the lesson all parents need to learn – just because we made our children, it does not mean that we own them. They belong to the Universe. We brought them into being but they are themselves. They are not us in miniature, or a mirror of our beliefs and ideals. They are rivers that will find their own way to the sea, irrespective of the routes we took. We can guide them on their journey, steer them from our experience and insight, and love them for who they are – we cannot make them into something they’re not. They will disagree with us, and they’re not wrong to – for however much we teach our children, they teach us the same.

Will Izzie grow into a strong woman? I think so, because she’s fearless and determined already. All we have to do is nurture that independent spirit, and prevent it getting her into trouble. The same goes with any parent – we have to work with what is already there, and accept things as they are, instead of trying to turn our kids into something they’re not. So long as we remember that, we’ll be doing our job.

The Key to a Happy Life

No expectations. None whatsoever.

Resentment, disappointment, annoyance, frustration, and a sense that everything in the world is unfair and fundamentally wrong, all stem from having expectations that it should be other rather than accepting what it really is. We spend far too much time looking at where we’ve come from, where we’re going, and where we think we should be, and not enough time living in the here and now and grasping what is right in front of us.

Having expectations when you’re a parent is fatal.

Last night, Lizzie went out to see the new James Bond film and have a pizza, leaving me looking after Izzie. ‘Great,’ I thought. ‘She’s been awake all day, she’s behaved like a gem, and I actually got more of her Sweet Potato Bake in her than on her, so she’ll be tired and contented. I’ll have her in bed by seven, cook some dinner, and have some much-needed time to myself. I’ll spend an hour on the Xbox and a couple of hours writing. Awesome. I’m looking forward to my evening.’

Fatal.

The fact it took me three hours to get her to sleep on Saturday and four hours on Sunday should have indicated that you can’t bank on a bedtime, but I somehow forgot this rudimentary aspect of parenting in the expectation of a restful evening. So when it took me from six till ten to get her to bed, trying milk, water, rocking, singing, reading aloud, dummy, teething gel, Calpol, cuddles, TV, hypnotism (which made her laugh), teddy bear, womb sounds, and ultimately she fell asleep from exhaustion, I was pissed. I mean, seriously pissed.

It was no fault of Izzie’s – she’s a baby – it was my fault. I hadn’t managed my expectations to fit reality, and the reality is that my time belongs to the baby, and any extra I get to myself is a bonus, not a given. Expecting you can have an independent existence in the first six months of a baby’s life is just barmy. Get on with what you can when you can, and accept that what you can’t you simply can’t. If I had no expectations of the evening, I wouldn’t have had a problem – I’d probably even have been happy.

I think that’s as good a lesson as any for life in general.

As a kid, I wanted to be a famous author. Everyone told me I would be, because that’s what you tell a four-year-old, and I accepted it because you believe everything an adult tells you. But as I grew older, they kept saying it. When I was ten, my grandfather told me that not only was I going to be an author, I was going to be one of the greatest authors in the world. When I was thirteen, my teacher told my parents I’d be on This Is Your Life one day. When I was seventeen another teacher told me I had a gift and it was my duty to share it with the world. Everyone – family, friends, educators, peers – thought I would go on to be the most successful thing ever to come out of the little town of Frimley, population 5,000.

I therefore lived my life with the unshakable expectation that I’d be a famous author at eighteen. I saw future me as a rich, successful author living in the city, attending movie premieres and society parties, frequenting all the best theatres, museums and art galleries the world had to offer. Essentially, all glitz, glamour and sophistication. Monaco, Cannes and Val D’Isere – that was going to be my life.

Skip eighteen years ahead and you find me a balding, pot-bellied autistic guy on antidepressants who lives in his partner’s house in a village on the edge of nowhere and has spent his life working in shops, office administration, domestic care and call centres. There’d be nothing wrong with it if it it wasn’t so far away from where I expected to be.

In my twenties, I couldn’t stand that my life didn’t match my plan for it. Why the hell wouldn’t anyone publish my novels? How could I possibly live the rest of my life an unknown? I was meant to be special, damn it – everyone said so. So why am I broke and alone? I spent my twenties writing novels and waiting for my life to begin.

It took me until my thirties to realise that my life had begun – and begun many years ago – it simply differed from my expected path. I still write my novels, still try to get them published, and sometimes I do feel as though the parade is passing me by, but I’m less discontented about the whole thing. I hope they get published, but I’m not suffering unduly because they’re not – it’s just the way my life has worked out. And there’s nothing wrong with my life.

The life I’m comparing it to – the successful me with the apartment in New York and the A-list friends – is nothing more than a fantasy. How can I feel bad that I’m not living the life of a person that never even existed anywhere but in my head? It’s like getting upset because the sky isn’t green – it never was nor could be green, so what’s the point of those tears?

My advice to anyone feeling they’ve not lived up to their potential is: don’t look at where you think you ought to be, look at where you are, because if it’s anything like my life, it’s not bad at all, just different. Disappointment comes from looking at the future and remembering the past, comparing your situation with what it was and how you think it should be. When I was eighteen, the thought of living in a little village, unknown, with a baby, and London a hundred miles away, was intolerable; at thirty-six, it’s pretty darn great. Live in the moment, appreciate the present for what it is – your life – and remember that those other lives you’re comparing yours to aren’t real.

So long as there’s air in our lungs, blood in our veins, and the sun is still up there somewhere, even if it’s hidden in cloud, we’re doing okay.

That’s the key to parenting, and to life itself: no expectations. Life and babies refuse to conform to preconceived notions. The sooner you can make peace with that, the happier you’ll be.

And if you're still not happy, here's Izzie asleep in a giraffe onesie to cheer you up!
And if you’re still not happy, here’s Izzie asleep in a giraffe onesie to cheer you up!

Rollin’, Rollin’, Rollin’, Rollin’

Unfortunately I have Limp Bizkit stuck in my head, coz all that baby’s doing is rollin’, rollin’, rollin’, rollin’, come on!

I guess there are worse earworms – Vanilla Ice’s ‘Rolling in my 5.0’ popped into my head yesterday, which is an indication both of my age and how crap my taste in music was circa 1990. But Proud Mary (‘Rollin’, rollin’, rollin’ on the river’) would be far better. Hell, I’d even accept the theme from Rawhide, but I’m stuck with Nu-metal. When she starts crawlin’ I’m going to get lumbered with Linkin Park, and Pantera when she starts to walk, but hey ho, that’s the penalty for a youth misspent in rock clubs.

Anyway, what started as something to be celebrated (‘Wow, she rolled over, how crazy cool!’) has become something awkward and life-changing. Because Izzie doesn’t gently roll over onto her belly, hang out there a moment, and then roll back, oh no. Instead she rolls at speed over and over and over again, and for some reason, she can only go to her left.

You put her on the floor beside the sofa, and five complete rolls take her to the sideboard, where she starts to cry because she can’t go any further. So you turn her around, and five rolls later she bumps into the sofa, and starts to cry because she can’t go any further, so you turn her round again, and so on, and so forth. Two hours later, dizzy and knackered, she asks for a feed, has a brief kip, and gets right back to the rolling.

It was funny, at first. But gradually it dawns on you that your life has just developed a mess of practical problems because that stationary bundle of joy is now mobile.

Before she discovered she could move, Izzie was perfectly happy bouncing in her Jumparoo or lying her on her play mat, so we could get on with things, provided we were in the room and kept an eye on her. Now, we have to keep an eye on her, and that’s all we can do. She stays on the play mat about a minute and then decides she’d rather be the other side of the room, so ‘Wheeee!’ – she’s off. She couldn’t care less about the Jumparoo because she can’t move around in it. So the time available to do chores has shrunk dramatically.

Then comes the hoovering. Because she’s off the mat and all over the floor, the carpet has to be spotless. With a dog in autumn and a massive old oak tree in the garden, it’s impossible to keep the leaves, mud, twigs and other random detritus outside – you open the door and half a forest blows in. Which means you have to vacuum twice a day.

And putting her to bed has become a nightmare. The moment you put her on her back in the cot, she rolls and faceplants against the wooden slats, and cries because she’s stuck, so you move her onto her back further from the edge, and watch her roll onto her stomach and then cry because she’s stuck again. You hold her in your arms and rock her to sleep, put her gently down on her back, leave the room, and ten minutes later she’s crying again because she’s rolled onto her stomach and can’t roll back the other way. And always to the left.

It’s spread to other areas, too. If I’m lying in bed with Izzie having tummy time on my belly, one of my favourite morning routines, she tries to throw herself off and onto the floor. In her Bumbo chair that we use with solids, she leans to the left and tries to roll the whole thing over on top of her. I just want to tell her to stop trying to grow up so fast, to enjoy being a baby – I mean, she’s not even five months old yet – but she smiles at me, leans her head to the left and over she rolls.

Roll on when she can roll to the right!