AS, Parenting and Mental Exhaustion

Now that Izzie is crawling, standing, climbing and talking (albeit gibberish), people keep telling me how this is the best, most exciting, and most rewarding time of raising a baby. Those first months where she slept and cuddled and needed, needed, needed were boring, challenging, the hardest slog, but now that she’s interactive and starting to give something back, you can enjoy it. Now it gets interesting.

I have to admit, I feel the opposite.

It’s my belief that Asperger’s Syndrome is at root a problem with information processing. We have no problem taking in vast quantities of information, but our brains are so structured that we compartmentalize this data. It’s in trying to interpret it – to work out how it relates to everything else and what it all means – that we struggle.

I can explain it much better using an orange.

Imagine that each piece of information that goes into making a concept, activity or understanding about the world is a single segment of an orange. A neurotypical person only needs to see one segment, or at the very most two or three, in order to realise they’re parts of an orange, and since they know what an orange looks like, they can construct the orange – the concept, the understanding – without needing to find the rest of the segments or even really thinking about it.

Not so if you have Asperger’s.

You get a piece of information – a segment – and you store it in one part of your mind. Then you find another piece, and even though it relates to the first and is part of the same orange, you don’t have the faculties to realise this, so you store it in a totally different part of your mind. And you keep going like that, and even when you have all the pieces, and you’ve seen an orange before, you can’t work out what it’s meant to look like, so you cram these segments together, trying to work out how they fit, and throwing some things out, and adding bits that aren’t supposed to be there, and ultimately making something you’re happy with but that, to anybody else, looks nothing like an orange.

Thus, in order to compensate for our deficits and function on a daily basis, people with Asperger’s Syndrome have to expend huge amounts of mental energy. What comes naturally to so many neurotypical people, we have to consciously process, and like a computer, we only have a limited amount of processing power.

This is why socialising is so exhausting. Interpreting what people are saying, how they’re saying it, what they mean, in what way they mean it, what you should say, what you shouldn’t say, when you should say it, is your voice too loud, too quiet, do they understand you, are you standing too close, are you making too much eye-contact or not enough, what’s the relationship between this person and that person, how are you coming across, and what does it all mean, while trying not to get distracted by music, other conversations, traffic noise, light bulbs, their deodorant, the way the sun is reflecting off someone’s forehead, and the fact their DVD collection isn’t alphabetized, is excruciating. It’s no wonder we so often become overwhelmed and suffer burnout. And why we need extended down time to recover.

So how does this relate to being a dad?

I liken it to the old people’s home I used to work in. Those upstairs were frail and grumpy, but were compos mentis and had simple needs – toileting, bathing, dressing, eating and sleeping. After working seventeen straight hours without a break, I’d be physically exhausted but mentally quite alert. Other than latent old-fashioned racism (‘That dark girl has stolen my pearls.’ ‘You’re wearing them, Gladys.’), it was a breeze.

Downstairs, behind code-locked doors, were the Alzheimer’s and dementia residents. Most of them were able-bodied, and so working with them wasn’t nearly as physically tiring as working upstairs. Mentally, however, it was like being hit with a crowbar.

You’d have a suddenly-naked ninety-year-old man charge at you with his willy in his hand, turn around to find a woman trying to remove non-existent make-up with cutlery. You’d try to console a former naval officer sobbing over a cat that had been dead for fifty years, before bathing a woman who screamed at the top of her lungs all day long. You ever tried shaving a man who’s spitting at you? Fighting off the advances of a woman who thinks you’re her long lost lover back from the dead?

I’d go home after a shift downstairs and my back wouldn’t ache, my feet wouldn’t hurt, and I’d be capable of running a marathon, but good golly, my brain would be mush. Trying to process the assault of noise, colour, emotion, attempts at communication – it left me useless for the whole night and into the next day.

And that’s how it is with Izzie.

When she was little, it was physically demanding but mentally easy – she spent half the time asleep and the rest of it feeding or pooping. Her needs were simple, her sounds were few and explicable, it was easy to know what she wanted and to cater to that. It was like she was an extension of myself and I loved it, because I was good at it and it worked.

Now, however, she has morphed into a person, entire of herself and completely separate from me. Since my problems revolve around interactivity, having a suddenly very interactive child is something I’m struggling with. She’s become incredibly complicated. It’s like I’m behind those code-locked doors again, downstairs in the dark.

These days, Izzie is in near-constant motion from six in the morning till gone seven at night. Instead of cuddles and sleep, she’s climbing on the furniture, chasing after the dog, throwing tantrums if you take the TV remote off her, fighting you when you change her nappy. Mealtimes are complicated affairs where you try to get enough nutrients and fluid into her while getting it spat and flung back into your face. You can’t take your eyes off her for thirty seconds or she’s unplugging the telephone or ripping the pages out of your favourite book. And no matter what you do, it seems to be wrong.

She’s learning at an astronomical rate, discovering new textures, tastes, sounds, skills, vocalizations, facial expressions. She laughs, she shouts, she reaches for you, she pulls your hair, and you spend all day right there with her, trying to keep up. And every new texture, taste, sound, skill, vocalization and facial expression, I’m trying to interpret it, trying to process it, trying not to get left behind. Am I doing it right, how do I keep her safe, what does she want, what does she need, why’s she doing that, is this right, what should I do, has she eaten enough, I’ve got to catch her if she falls, what rules should I make for this, and that, and the other, and what does it all mean?

And that’s before we factor in visits from family and friends, health visitors, nursery nurses, social workers, care coordinators and support workers, and the everyday trivia of shopping, cooking, cleaning, writing, working, which create a whole bunch of processing issues of their own.

Mentally, I’m mush.

This interactive stage, before babies can express themselves but after they have a need to do so, is by far the hardest part of parenting I’ve experienced. Lizzie is loving it, but I can’t help counting down the hours until Izzie goes to bed, and that’s making me feel like a crap dad, especially as I keep being told that this is meant to be such an amazing period. By the time I’ve got Izzie down, I’m not fit for anything in the evening but staring numbly into space, my brain trying to make oranges out of everything I’ve seen and done. Throw in a touch of SAD and I can feel the Black Dog circling ever closer to me again.

I have an adorable daughter and I seem to be doing a good job of raising her. Physically, it’s easier than ever. But oh my gosh I’m finding it mentally exhausting at the moment.

Perhaps this is just something I’ll have to get used to.

Advertisements

The Dreaded Moment

It’s the moment every parent dreads. You put your baby in her cot, flat on her back and half-asleep. You wander to the bathroom to cut the tag off her new gro-bag. And when you return you see your not-quite-eight-months baby doing this:

IMG_5128
I am your worst nightmare!

Yup, she can stand. By herself. With no help from daddy anymore. Who needs you? Not me!

So in the morning you put her on her little pink scooter-car thing, and she not only shuffles around the floor like an infant Lewis Hamilton, she’s cocky about it:

IMG_5345
Ha! One hand! Eat my dust, turkeys!

It’s made mealtimes rather interesting, because along with this latest development comes a desire for independence stronger than some separatist movements. She doesn’t want me to hold her beaker anymore – she wants to do it herself. And if I try to help her, I get screamed at. Damn it, dad, I don’t care how much water I pour over myself, just let me do it my way!

Every achievement on the way to full mobility is written large upon her face. She grins from ear to ear, laughs uproariously, and babbles excitedly at how freaking cool she is.

But her ego has outgrown her ability.

She’s increasingly annoyed at how slow crawling is. You can see (and hear) her frustration that she can’t move as quick and easy as she wants. She keeps getting up on one knee and lifting both hands skywards as though asking to be picked up – but woe betide if you try, because she’s actually raising her arms in victory that she’s one step closer to walking and doesn’t appreciate you stepping on her freedom, thank you very much.

Her ‘victory hands’ are actually a little counter-productive to the whole standing project – she gets to her hands and feet like a cat arching its back, makes a triumphant one-armed salute, and face plants right into the carpet. But that doesn’t faze her at all, because she starts right up again.

And all of this while teething and fighting off an ear-infection. Determined is not the word: she’s a little trooper!

And yet, along with the pride, comes a tightening of the chest and a catching of the breath, because my baby is on the verge of becoming a toddler. I thought we’d have more time with our baby, that it’d be at least a year before she gave up her total dependence on us. I want to tell her to slow down, to stop being in such a rush, that it’ll come regardless, but she’s inherited my willfulness – I was the same as a baby, racing towards developmental milestones as though they came with prizes. I already feel like I’m being pushed aside, and I can’t say I altogether like it.

But then, when I think how far we’ve come since those first days of life in June, when I worried she wouldn’t be coming out of hospital, to how she is now, I have nothing to complain about. She’s a bona fide miracle.

20150619_085153
Week One
IMG_0794
Week 34

If her journey to independence continues at this rate, before I know it she’ll be trying on funky hats and telling me in a Mockney accent that she wants to be a chimneysweep’s scamp. I dread that day.

IMG_5123
Too late!

Medicine vs. Magic

When you’re a parent, people never tire of telling you what to do and how to do it, not in the form of advice, but in the form of judgement. And when it comes to health, they’re bloody insistent. With everything else you have to contend with, it’s damnably unfair to hear veiled criticisms of your parenting, especially when you’re in the emotionally vulnerable position of wanting to do the right thing with a screaming and thoroughly unhappy baby.

The best response is to bite back your annoyance and say, ‘Thank you for your advice, but as the mother/father of [insert baby’s name], I will make the decision as to what is best for my child.’ It’s short, polite, to the point, and reminds them where the power truly lies.

But it doesn’t stop you wanting to throttle them with their condescending attitudes and ridiculous ideas.

It’s like a friend of mine who is on a personal mission to stop me giving Calpol to my baby, because paracetamol is bad, it’s bad for babies, it damages their liver, it’s unnatural, and all that jazz. Whenever she discovers I still use it, she turns into an evangelical preacher and acts like I’m slowly and deliberately poisoning my child.

With Calpol.

I’m not saying that paracetamol is safe – overdoses do damage livers – and nor do I advocate dosing kids up on paracetamol as and when you feel like it, but when it’s necessary, and when it is administered carefully, at the right doses, then there is nothing wrong with it. Izzie has an ear infection and a high temperature, as I discovered yesterday afternoon when I rushed her to the doctor’s after she projectile vomited all over Lizzie. The doctor prescribed Calpol to bring down the fever. Simple.

But, according to my opinionated friend, I’m practically killing the baby by giving her paracetamol, and I should avoid using it until I’ve tried some alternatives.

‘What alternatives?’ I asked. ‘Child Ibuprofen? Because I have that too.’

Nope, lectured my forthright friend. Homeopathic remedies.

Ah. Magic water and wishful thinking, then. Glad we had this conversation.

Until a few years ago, I thought ‘homeopathy’ was simply another way of saying ‘alternative medicine’. I figured it was herbal remedies like St John’s Wort, cinchona bark, and suchlike. But that’s not homeopathy at all.

Homeopathy is a medical system invented in the late 1700s that posits that ‘like cures like’ (hence the ‘homeo’ part of the word). Its essential belief is that if you put something that causes an illness into some water – say, something that causes a headache – then dilute that water down almost exponentially until there’s unlikely to be a single molecule of the original substance left, that water is somehow energised and imprinted with the ‘memory’ of that substance and will therefore be able to cure headaches.

There’s another word for water that contains no molecules of any other substance:

Water.

Homeopathic remedies contain precisely zero active ingredients and are therefore precisely useless. And ‘like cures like’ has no basis in science whatsoever. That’s not just my opinion – the National Institute of Health and Care Excellence (NICE) does not recommend homeopathy is used to treat any ailment, the NHS say there’s no good evidence that homeopathy is an effective treatment for any health condition, while a 2010 House of Commons Science and Technology Committee report concluded homeopathy is no more effective than placebos (http://www.nhs.uk/conditions/Homeopathy/pages/introduction.aspx).

No matter how much you talk about Nature with a capital N, or the Law of Similars, or how substances leave a quantum imprint behind, I do not believe in homeopathy. I will take science and evidence over magic and fairy dust every time.

Then there’s the close relative who has this crazy notion that the best way to cure a cold is to consume vast quantities of vitamin C, and so tries to get us to overdose every time we have the slightest sniffle. The fact the human body can only absorb a finite amount of vitimin C before excreting it out, and excessive amounts give you diarrhoea, means it’s not the best advice, ta.

And don’t get me started on amber necklaces helping with teething. This whole ‘Baltic Amber contains up to 8% succinite, an anti-inflammatory and analgesic that will be absorbed into the baby’s skin to ease pain, cut drooling, and stimulate the thyroid’ is pseudoscientific claptrap. You show me a substance that is strong enough to exist for millions of years at excessive temperature and pressure, yet is weak enough to leak out when brought to a baby’s body temperature. I’d respect them more if they went right ahead and said, ‘It works by magic,’ or even, ‘We don’t know why it works, but it does,’ than duping people into thinking there’s a scientific basis for this. And since the same people who advocate amber necklaces also disparage modern medicine as ‘dangerous’, aren’t they worried that they have no control over the dose of succinite their baby receives?

I’ll end by paraphrasing GK Chesterton: it’s good to have an open mind, but don’t open it so much that your brain falls out!

Asperger’s, Parenting and Unexpected Change

As is well-covered in the literature of autism, people with Asperger’s have a love of routines and struggle to cope with change. What I’ve been realising lately is that this bald statement covers up the nuances of what this means in practice, particularly when you’re the parent of a seven-month old.

And it can affect two people with AS in opposite ways.

I cannot handle change in terms of things being added. I need time to process and accept things that are coming up. Ever since I was a kid, I needed plenty of notice – at least a week – to get my head around a visit from relatives, a trip out somewhere, or anything out of the ordinary. If not, I tend to moan, kick up a fuss, say some nasty things I don’t really mean, and then go along with it anyway. But I don’t have much of a problem with things being cancelled anymore – indeed, the principal emotion is relief I don’t have to go through the effort of painting on my ‘public’ face and holding onto a fake smile for however many hours. I would be a hermit if I could get away with it.

Lizzie suffers the opposite extreme: she can’t handle change when it’s things being removed. She is mostly fine with things being added to the routine, especially if she’s the one doing the adding, but if something is cancelled her first response is to throw a tantrum. I liken it to a person walking along a road and finding a brick wall blocking their path. While other people would try to find a way around it, or else turn back, Lizzie bashes her head against it until one of them gives – sometimes the wall, but most often the head. Actually, scratch that – most often the heads of those around her.

Babies, as some of you are well aware and others can easily imagine, are unpredictable. Not only that, the world becomes unpredictable when you have them. Visitors arrive with little or no notice, longheld plans need to be dropped without warning, and you have to rush off to the doctor out of the blue. It’s impossible to say which of us struggles the most with the changes having a baby has brought to our lives, but I can guarantee that I suffer the most.

Now, when I say ‘suffer’, I’m not being melodramatic. I’m not talking about the discomfort I feel at friends, relatives and healthcare professionals clamouring for our time or pitching up on our doorstep unannounced. Nor am I talking about the disruption that sudden trips to the shops for some vital knick-knack cause to my quiet, ordered life. Fact is, the baby’s needs come first. I have accepted that. My needs, as an autistic individual, are immaterial next to hers. I have made that choice.

Unfortunately, Lizzie is either unwilling or, by dint of her condition, unable to make that choice. And so I genuinely suffer.

Like before Christmas when Izzie had a cold and I hadn’t slept for two days. Sunday morning I was so tired I couldn’t see straight, my back ached, I was covered in snot and dribble, and my throat felt like I’d been swallowing razor blades. I hadn’t had the chance to drink, eat, go to the bathroom, since the night before. When Lizzie arose, well-rested, and made herself some breakfast, I asked her to please look after the baby for an hour to give me a rest. But she had planned to go shopping, and, unable to alter her plans, she toddled off for more than three hours of non-essential retail therapy. I suffered.

Or like a couple of weeks ago when I got a migraine about teatime. Lizzie had planned to go out, so out she went. I couldn’t open my eyes more than slits as the light burned, I kept seeing spots of light dancing in front of my face, and my head throbbed with every beat of my heart like somebody was burying an axe in my skull. Every time I bent forward, it felt like my brain was being forced out of my eye-sockets. But I duly bathed the baby, gritting my teeth and shouting in pain whenever it became too much; hissed as I dried the baby; roared as I dressed her in nappy and sleepsuit; cried out as I placed her as gently as I could into the cot; snarled as I sang her to sleep. And then I collapsed, nauseous, into bed. I suffered.

Or the other week in the storms – our village turns into an island during heavy rain, and three years back I wrote off my car by driving into floodwaters (the single-most butt-puckering moment of my life!). So although we’d planned to take the baby to town, I refused point blank to expose her to the risk of getting stuck down some country lane surrounded by cows pretending to be ducks. The sensible thing. Unless you have autism and can’t change plans, in which case you kick off like a wild animal, say some truly awful things, and then go out anyway sans partner and baby. It was only later she admitted I was right, it had been too wet and downright risky to go out in that weather, with or without the baby.

Now, as this is mostly a positive, light-hearted blog, I’d like to say that whenever this happens I smile wryly, roll my eyes, say, ‘That’s Lizzie!’ to hoots of canned laughter, accept that it’s just her autism, and forgive and forget.

But nor is this a fairy tale.

There is a lingering resentment bubbling away under the surface as my needs, and Izzie’s needs, repeatedly come second to Lizzie’s inability to alter her plans for the greater good. Whether she can help it or not doesn’t matter – the resentment is there.

I have heard it said before that partnering a person with Asperger’s Syndrome is a form of abuse – not for the Aspie but the poor neurotypical saddled with their unreasonable behaviour. As someone with AS, I disagree with that, but let me be clear – people with Asperger’s can be cold, insensitive, selfish pricks at times. That’s the reality hiding behind the innocuous words, ‘people with Asperger’s have a love of routines and struggle to cope with change’.