AS, Anxiety and Baby Safety

It is rare to meet someone with AS who doesn’t have some kind of anxiety problem, and yet anxiety is not part of Asperger’s Syndrome. Rather, it seems the symptoms of Asperger’s – the social confusion, difficulties with understanding, need for routine and inability to cope with change – often lead us into situations we can’t cope with and encourage others to tease us, humiliate us and bully us, and it is a lifetime of such occurrences, repeatedly falling on our arses, that causes the anxiety.

Even then, some of us can be bigger worriers than others.

It turns out that I have a reputation amongst the NCT crowd of being something of a worrier and rather overprotective (shocking, I know!). As I’ve said before, in order to cope with our anxieties, people with Asperger’s plan their lives to avoid risk and the unpredictable. Having a baby means that you don’t just have to plan to keep yourself safe – you have to think of the baby too. And your anxieties about yourself pale into insignificance alongside your need to protect your baby.

Now eight-and-a-half months old, Izzie has reached that stage where she wants to be involved with everything. And by everything, I mean EVERYTHING. She wants to know what you’re doing, what your partner’s doing, what the dog’s doing, what the cat’s doing, what the people out the window are doing, what’s behind that sofa, what’s in that cupboard, can I open this drawer, why can’t I wear that hat, your glasses would look better if I bent them, what happens if I empty out your bag, and everything in between. And keeping her safe has become a nightmare.

The house is starting to resemble a fortress. There are barred gates across every doorway, a wooden fence blocking access to the TV, a hexagonal playpen that looks like a cage-fighting arena taking up half the lounge, and foam corner protectors uglying up most of the furniture. We’ve put down a soft mat as the floor was (probably) too hard, and I’ve even relented about bumpers and put protectors around each slat of the cot because she keeps falling and cracking her head against the bars. Every single night.

But it’s all to no avail. She’s determined to stand and walk before she’s ready, which means she falls often and falls hard. Worse, she doesn’t seem to care – if she’s standing up against the sofa and wants to get to the other, she throws herself down like an unemployed stuntman so she can crawl; if she has a toy, she thrashes it about until she’s knocked herself almost senseless; and within a few seconds of putting her in her cot you’ll hear an awful, heavy thud as she drives her head into the wood, deliberately and repeatedly, as if that’s how the cool kids get to sleep these days.

I’ve had to come to the conclusion that it’s impossible to safeguard her entirely. I can chase her around the room as she waddles about, and catch her if she falls backwards – I can’t stop those face-planting forward falls that squish her nose and knock her teeth back into her gums. Nor can I stop her crawling over her wooden blocks, getting her fingers caught when she bashes two toys together, headbutting my knees or suddenly slamming her face into my forehead – no matter what precautions you take, she’s got you.

I was sitting on the sofa the other day when the lamp started sliding across the sideboard all by itself. Did we have a ghost? I jumped up to find Izzie had pulled herself to her feet, squeezed into the gap down the side of the dresser, reached up to the top and, even though it was out of sight, found the lead with her fingertips and was slowly preparing to pull the whole, heavy ceramic base of the lamp down on her head. This is just one example out of a hundred. Unless we have no phones, lights, chairs, sideboards, tables, floors, people in the room – anything, in fact – we will never eliminate risk.

All of this means the bruise above her eye the size and shape of a thumbprint has been joined by two on her temple the size of peanuts and one right in the middle of her forehead as big as an egg. And she’s into scratching herself too. We take her out in public, all black and blue and red, I’m terrified we’re going to get arrested for using her as a football. ‘It happened when she fell,’ I tell family and friends, and even I think I sound guilty.

The same is true of weaning. I freaking hate feeding her these days. Before, it was milk – pure, wholesome, liquidy milk. Now, it’s all kinds of food, food with bits, with lumps, with chunks. It’s bread, it’s meat, it’s pasta, it’s fruit. So at least once a meal she’ll laugh, or try to talk, or simply swallow something too big, and she’ll start to choke. Totally normal, apparently, totally natural, since she’s learning new textures and tastes, but as her face turns purple and her eyes bulge and tears spurt out of them, I have to fight down the panic because I don’t want to alarm her any more than she already is. So I’m a nervous wreck before we even begin, waiting for that unexpected moment she’ll suddenly start choking, and – something particularly hard for me – there is nothing I can do to prevent it. We can’t keep her on yoghurt and soup all her life, but good gosh I wish we could!

It’s a hard reality to accept but one that I guess all parents eventually have to – we cannot protect our children from the world or from themselves. We can try our best to ensure they’re kept safe, in a protected environment that minimises the risk factors, and be there to pick them back up, but ultimately they’re going to get bumps and bruises, fall out of trees, start dating that boy you don’t like just to piss you off – the trick is not to make a big deal out of it and hope that the damage is never too great. Otherwise you’ll make them neurotic and yourself a basket case, or worse – you’ll turn them into you.

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.