On anger and housework.

Bone weary. The house unravelling around me. A month ago I had the downstairs looking reasonably clean and tidy to the point where I wouldn’t be embarrassed if someone called in. Now I’d have to barricade the door. The relentlessness of it is wearing me down, while frustration and resentment build up that the kids ignore the chores while I nag and nag until I’m screaming. When I finally crack and yell and get either of them to at long last do the thing I’ve spent days asking them to do – take a bath! Take your clean washing upstairs! Bring your laundry down to the basket! Please fetch the dirty glasses and plates from your room! – they look at me like I’m being entirely unreasonable.

This is not how I want my life to look. Or feel.

Last weekend I had to drop everything to take a friend to hospital, about fifteen miles away. I sat with her for two hours, until they decided she needed to stay in for 24 hours. She didn’t have anything with her, so I drove back again to pack an overnight bag, making sure I washed the dishes sitting in her sink so she wouldn’t have to come home to them. I stopped off to buy a couple of drinks and snacks to make sure she didn’t go hungry if the NHS food wasn’t up to much, and because there’s not a lot of choice of drinks other than tea and coffee. Back to the hospital, keeping her company for another hour until visiting time was over and she was being taken away for an X-ray. It was about six hours all in all, and I didn’t mind any of it, I’m glad to be of use to her. “This is the closest thing I’ve had to a night out in a long time,” I told her. I wasn’t even joking.

What I minded was texting the kids at 9.15pm to let them know I was on my way home, only to be told that they hadn’t cooked enough food for me after all and I’d need to stop off and buy some dinner for myself. Thank God there was a Tesco Express close to the hospital. Getting home after 10 to discover that no one had thought to wash the dishes but had just piled up more, and that the laundry – my bed linen – was still hanging on the line in the damp evening air. Lily was still playing on the computer in the living room – despite having assured me in an argument earlier that day that she was perfectly capable of self-regulating her computer time, breaks, conduct etc.

“Lily, you’ve been playing on it for over seven hours straight.”

“No, I’ve taken some breaks, I was doing Wii Sports with Ivy.”

Taking a break from the computer to play on the Wii is not what I consider a legitimate break. It took another twenty minutes to chase her off it and into her bedroom, then I sat down with a sad-looking microwave carbonara that went against all of my dietary rules, in a living room full of computers, wires, papers and general detritus.

This is not how I want my life to look. Or feel.

I wanted to flop down on my bed, exhausted, and go straight to sleep. I had to make it first, with slightly damp sheets. I tried to convince myself the dampness would be refreshing after another hot day.

Morning, and the messy kitchen still needs to be tackled, the dishes are still waiting to be washed. A mouldy glass of water appears overnight, brought down from someone’s bedroom. It takes some doing to create mouldy water. The garden needs watering, and the weeds need pulling before they take over. Another load to put in the washing machine, and when did Ivy last change her bedding? A meal plan needs putting together, a shopping list made and presumably shopped for. There are bricks to collect from a house around the corner, before the skip is taken away tomorrow, they’ve said I can have them for my garden to make paths with. I need to cancel my car insurance and hire a handyman and fill out the forms to reclaim the travel costs from Lily’s last appointment, and sort out a new password for my bank account. I’m still feeling angsty and agitated after a week in which several strangers saw fit to have a go at me over things that really didn’t warrant it – triggering as hell after 4 years of Simon blaming me for stuff that wasn’t my fault. Half of me wants to curl up under the sheets and not get up, the other half is screaming that I should just jump in my car and drive away, escape and leave it all behind. I’m going to have to have the talk with the kids again, the same one I keep having, the one that goes I need you to help me. You live here too. You know what jobs need doing. Please do some of them without me having to constantly nag and beg for help. I really can’t do everything on my own. I am so so sick of this one-sided conversation. I’ve left a sign saying No Computer on Lily’s computer, but I can hear her playing. When I go down, she’s on the Wii instead, no chores done, no studying done, wearing the same clothes she’s had on all week and when I try to remonstrate that she shouldn’t be playing games when there’s jobs to be done, she’s utterly unrepentant.

“Get off my ass,” I hear her muttering as I leave the room. I explode at her, pent up with all the jobs I’m trying to do at once.

Do I have to die? Do I have to actually die before someone helps me?

It’s the relentlessness of being a single parent that’s grinding me down. There’s no pause button, no support, no respite. Not a single day off. Not a single night off. I need a holiday from my life, basically. A week where the stress and struggle can stop. I may as well be asking to go to the Moon. And beneath all this – the hurt. The injustice. The anger burning a hole through my chest. Because this is what Simon has done to me. I’m struggling day after day after day with no hope of respite, no hope of any improvement, while he lords it up in their big house, with parking and garage, with holidays whenever they want, with absolutely no responsibilities, no kids to make a mess or interrupt their plans, while still claiming that he is the victim in all of this. I want to scream. I want to throw rocks at his windows and plenty of other stuff that for legal reasons I should definitely not admit to in a public forum. And I despair. Will I ever be healed of this? Of him?

This is not how I want my life to look. Or feel.

I don’t want my life to be a constant reminder of the abuse that I was put through. But it’s hard, when every single day the house is still too small, and I don’t have anywhere to park, and I’m bent double under the weight of holding it all together and raising the kids single-handedly …and Simon’s got away scot-free. Without Legal Aid, there’s no way I could afford to take him back to court to get a fairer settlement, even if that was an actual legal possibility, which it probably isn’t. There should be a free tribunal, a couple of years after divorce, that you could go back to if it’s obvious that your ex lied about finances and circumstances and have any imbalances redressed. Too often divorce settlements are based on equal childcare that somehow disappears once he’s won himself a bigger house and more money than he’d have got if the judge knew the kids would end up with you full time. Sadly I’ve heard too many similar stories to mine and the injustice burns; what I went through, what so many other women have been put through, or are going through right now.

Every time I struggle to find a parking space for the night while I’m exhausted and having to carry shopping bags a quarter mile back to the house, I think of Simon with his garage and driveway. Every time the house feels cluttered and overwhelming and I despair of ever turning our too small house into a comfortable home, I think of Simon with his four bedrooms and two receptions. Every time I give up and close the holiday websites, knowing I just can’t afford to take us away during school vacations, I think of Simon, able to jet away with Astrid off-peak, whenever he wants. Every time I’m faced with Lily raging at me over school work, or being asked to take a bath, or refusing to get off her computer for a break, I think of Simon, who never has to bother with her behaviour. And so on, and so on. How do you heal when the very cornerstones of daily life are a trigger?

This might not be how I want life to look or feel, yet I have no idea of how to get from here to there. So many of us are in that same boat, trapped by financial circumstances that we have little chance of improving, certainly not when other factors are in play; children, disabilities, divorce, trauma, illness, family, lay-offs. If you have money, a solution is affordable for so many of the obstacles in life. If not, the obstacles seem insurmountable, blocking the path to earning the money that would ease the situation.

My friend texts me, she’s going to have to stay in for another 24 hours and needs me to bring more clothes. Here I am complaining about my life while a friend is fighting cancer. Another wake up call, but I’m getting angry at how it’s the good people who seem to suffer most. Prayer, Lottery ticket, a giant red button to just make things stop for a while; I don’t have the answers to how to make life better right now. I really wish I did. In the meantime; just keep breathing.

Building up and slimming down; weight and image post-abuse.

One of the exercises we did together on the domestic abuse recovery course was to create an image of a victim of domestic abuse, sketched out on the flip chart by the facilitator. Our cartoon woman wasn’t necessarily covered in bruises, after all not everyone is a victim of physical violence, it was more about capturing the effects of living with long term emotional and psychological abuse. She was, we decided, either underweight from chronic stress and not being able to eat, or overweight from comfort eating. Bags and dark circles under her eyes from stress-related insomnia. Her hair was a mess, her clothes frumpy as she couldn’t justify spending any money on herself – even if she had any money to spend. She might be missing a tooth after not taking care or herself, or maybe she was grinding her teeth at night. Her shoulders were constantly up around her ears, stiff with stress and anxiety, causing tension that gave her migraines. Her expression was a rigid mask of fear, always worrying about what was going to happen next, scanning the horizon for the next attack, or frowning as her mind replayed what had already happened. She might well have developed an ongoing health complaint; as well as migraines and insomnia there could be IBS, panic attacks, hypertension, eczema as well as even more serious issues. She wasn’t looking good, in other words.

At home the decluttering continues, and it seems to be time to tackle the photos. As well as boxes of unsorted prints, CDs, memory sticks and folder after folder of digital shots, there are now several albums of unwanted memories. What do you do with your wedding album now that you’re divorced? Burn it? Keep it for the kids? Going through the pictures I’m struck by how unbelievably pale I look – some kind of iron supplement intervention was surely required – and how thin I am, my dress being taken in to a UK size 10 for the big day. Happy too, so very happy. In those days I had no problem posing for photographs, could look in the mirror and smile at myself. Now I shy away from cameras and tend to avoid mirrors, my reflection usually making my heart sink. Who is that woman? I don’t recognise myself – the extra weight, the thinning, frizzy hair, dull eyes and resigned expression. She feels so heavy, this stranger in the mirror, not just her bloated belly and aching legs but her spirit too. Can she possibly be the same person as the beaming young woman in her wedding dress? It doesn’t seem likely. She’s the woman from the flip chart, self esteem eroded and replaced by self-neglect, health suffering, defeated.

Body positivity seems to be a new trend, with fashion models ranging from what can only be described as normal (rather than seriously underweight) to curvaceous to overweight now being called body activists. I’m all for a healthier depiction of female bodies rather than only young, skinny, flawless forms being shown in the media, but frankly? Fat is fat. Right now, I’m overweight. Fat. Not a body activist. I’ve gone up from a size 12-14 to a 16-18, perhaps even larger at times. Most of my clothes no longer fit. And while I could embrace body positivity and learn to love myself the way I am, that’s not going to help my arteries, or my pre-diabetic state. Being overweight isn’t healthy. Being underweight isn’t healthy either. And while we shouldn’t be shaming each other over our weight, let’s not pretend that being obese is good for you, no matter how lovely your Instagram posts look. I hate feeling this way, heavy and bloated and tired, no energy or enthusiasm, no shine in my eyes. While I will never be that skinny girl in the photos again, it’s time to change, both inside and out. I need to lose around 4 stone – 4! – to get down to a healthy weight. I want to wake up in the morning feeling energised rather than exhausted. Above all, I’d like to be able to look into the mirror and smile at myself again. The mission; building myself up inside, while slimming down the outside.

Progress is slow and it’s hard not to rely on sugar as an emotional crutch, particularly when Lily is is giving me a hard time – and generally Lily is always giving me a hard time. A couple of times previously I’ve tried to start losing the weight, only for life to crash and burn around me; out came the chocolate again. This time I’ve lost maybe two pounds, but the scales seem to already be stuck, not moving any further down. But I have to go gently, have to trust that this will work, that I’m capable of succeeding. After years of hauling myself through a marriage devoid of affection, after living with a husband who never reached for me, after enduring the emotional and psychological torment of the past few years, I’m not willing to put myself through more. No more abuse, no beating myself up, no blame, no shame. I reached for food rather than the bottle during a time of unbearable stress, even while knowing there would ultimately be a price to pay. But now it’s time. It has to be. My journey back to wellbeing has to come from self-kindness rather than a form of self-hatred. To make healthier choices out of love for myself, wanting to heal my body, rather than punishing myself or feeling deprived. And to do it while loving myself – or learning to love myself – rather than hiding from my own reflection.

The Summer Manifesto

“What on earth is that?” my friend asked, staring at the corkboard in my kitchen. On it, a piece of paper covered with writing and drawings, proudly bearing the title Summer Manifesto.

“Oh, it’s just a list of things we’d like to do this summer,” I answered, suddenly embarrassed by her tone. Was this yet another thing that normal people didn’t do? And if so, how did they keep track of all the different activities on offer, places to go, films to watch, stuff to try out?

That was a few years ago, but the Summer Manifesto has now become a tradition for us. Everyone is encouraged to come up with ideas, on the understanding that these are suggestions, and we might not be able to do all of them- it’s critical to manage expectations when dealing with Aspergers. Suggestions range from going to a particular park to swimming in the lake, having a picnic to going on holiday. The unlikelihood of being able to afford a holiday makes our Manifesto even more important when it comes to making our summers special. It means on days when there’s nothing planned we’ve got a ready made list of suggestions. It also lets me know what the kids’ priorities are, rather than me setting up activities they’re not that interested in, and that sometimes their wishes are remarkably simple. Plus it gives me a chance to look in advance for Groupon offers for things we might not otherwise try.

I’m a firm believer that kids need downtime, so I don’t pack every hour of every day with non-stop activities. In fact it’s vital to build in Decompression Days after a big day out to prevent everyone getting overtired and overstimulated and generally hellish. The flip side of that is that it’s easy to let the school holidays slip away without really having done much. Having a manifesto means I can make sure we’ve got at least one activity or outing planned for each week, rather than realising we’re into the final few days of the holidays and need to cram it all in at the last minute. It makes it more likely that I’ll have thought about things in advance and therefore have time to invite a friend to join us. The main benefit is that by the end of the summer, we’ll have had a bundle of good experiences as a family which otherwise wouldn’t have happened. Given the nastiness of the divorce, I’m keen to pack as many positive experiences in as I can before the kids are grown in the hope of giving them at least some happy memories to look back on.

The Manifesto also lays out expectations around chores etc, making it clear that no electronic gadgets are to be used until chores have been done. When the kids were younger, the rule was they had to choose 2 out of 3 activities; something creative, something educational, or something helpful. Allowing them to make a choice made them feel more empowered, meaning it was more likely that they’d cooperate with what was basically an attempt to make sure that they didn’t spend all day every day watching TV or playing on the computer. This year, aged 13 and 15, I’m just laying down the law as to what needs doing around the house; if it doesn’t get done, the planned activity isn’t going to happen. I’d really like to encourage Lily to spend some time studying as she enters her final GCSE year – it’s unlikely that I’ll achieve this without a massive amount of conflict though.

So on Day One of the school holidays we sat down together to work on this year’s Manifesto, complete with a Pinterest inspiration board to back it up with. This year’s suggestions vary from make smoothies to have a campfire to fix up the bikes and go for a ride, all the way up to hold a festival in our garden. Allrighty then, I’ll see if I can get The Killers booked in for next Thursday, and maybe a Portaloo or two. Like I said, it’s an ideas list so everything is allowed but not everything will happen. Alongside it is a weekly planner sheet to write on the day’s activities and chores, plus any reminders about appointments etc. It’s what works for us, another example of how ADHD requires us to be more organised in a way that has other people describe us as OCD or anal or asking What on earth is that? Whatever. On the second day of the holidays we were running round shooting each other at Laser Tag, which wouldn’t have happened without the Manifesto. Next week it’s Tubing at the nearby ski centre, courtesy of Groupon. We all want to think of ourselves as spontaneous but it’s worth planning for fun; the sands of time will keep on trickling through the hourglass of our days regardless of whether or not we’ve planned for them. Let’s try and make sure that some of life sparkles on its way past.

The Grand Plan

Garden design starts with a plan. Usually. Except, as I’ve mentioned, the dimensions of my garden simply don’t make sense on paper, it’s absurdly long and narrow. I’ve tried sketching out ideas, but the garden refuses to be pinned down. Instead, I’ve found myself feeling my way into it, having a rough idea of what I want and kind of where that might end up, but working it out as I go. Building from the ground up and seeing where it takes me, rather than imposing any artificial design that’s been sketched out from the comfort of my living room.

Here’s the starting point, from the estate agent’s pictures before I moved in. Sadly, that’s not my bench.

All very clean and tidy – but there’s nothing there. An old rose bush and the plum tree, plus straggly grass with trip-holes for the unwary dug by the previous owner’s dog. No flowers, no herbs, no soul. A fence halfway down to contain said dog, and the garden office/cabin beyond. A blank canvas, in other words.

The first idea was to have three circles cut into the grass – I marked out the first couple last year, but ran out of time and energy to properly cut them out. To get rid of the unwanted grass and cut down on weeds in the meantime, I put sheets of cardboard down – it looked hideous but helped to get the job done.

Phase one, the first circle with a large new flower bed between it and the patio is pretty much complete. More plants could be fitted in, but planting will be an ongoing process according to finances and hopefully the ability to raise some from seed – at the moment the priority is to mark out the bones of the garden. My instinct has been to create at least one small area that feels like a garden in the meantime, and seeing the flowers from my bedroom window always brings a smile to my face.

Phase two is to cut out the remaining two circles of grass, edge them and weed the newly created planting beds surrounding them. Both circles have been cut, and one has been edged, albeit wonkily, with timber edging that I managed to get on sale. The weeding wasn’t completed, and as a result both circles are being invaded by an eye-watering amount of convolvulus – bindweed. Nightmare. I want to garden organically, but have started to fantasise about a large dose of Weed n Feed, as there’s no real way I can beat the bindweed, especially as it’s burying its pernicious roots into the “lawn.”. Even if I miraculously beat it back to the fenceline, it will just keep creeping back in from next door’s garden as Mike isn’t much of a gardener.

Phase three; my much-wanted herb garden, just beyond the now-removed centre fence. Based on a mandala design, a circular area of path that buds into the surrounding planting area, giving a larger reach. This has been marked out for over a month, the edges outlined and cut halfway – until the weather became so hot and the ground baked solid. So progress has halted until we get at least one decent rainfall to soften the ground. Plus it’s just too hot to start digging, even if I didn’t have to use a pickaxe to get through the soil. It’s been left, as Lily said, looking like I’m marking out some kind of satanic ritual. This picture was taken a few weeks ago – the grass is like dried straw by now.

With these areas marked out, it’s easy to see that a little potting shed would be perfect in between the grass circles and the herb garden. A strip of decking outside the shed could double up as both a path and a place to sit, and the little space left is where the pond should go. It’s easy to see all of this, in the bliss of my imagination. Creating it though is another story. I need a new car and my shower is still broken. Three doors need the attention of a handyman, for three different reasons. While there are sheds at B&Q that seem fairly cheap, by the time delivery costs have been factored in, never mind assembly costs, it’s just too expensive. Realistically I need to build the shed myself, from pallets and scraps. Rather more realistically – I have zero building experience, and as Ivy would say, have obviously been spending far too much time on Pinterest. Ah, Pinterest – the mythical realm where inspiration triumphs over actual ability. A pond? That seems doable, until I likely unearth a large sunken concrete bunker, or fail to drive the spade in more than six inches deep. Oh, and of course I can’t handle the electric pump installation, neither can I afford to hire someone… and so it would be a stagnant swamp rather than pleasant pond. What should be phases four and five are fast becoming a personal Everest, the litmus test that decides whether I can manage to seriously push myself into new skills or whether in fact I’m just seriously deluded. More pallets are required before I can think about starting the shed though – and it’s far too hot to be trying to lug pallets up the street, or so I’m telling myself.

Phase six – and by now I’m probably fortune-telling rather than planning – would be to build a covered pergola adjoining the cabin to create a social space that’s further away from the house. See, my head figures that by now I’ve already managed to build a shed from scratch, so a pergola should be a breeze, right? This would be the perfect place for an outdoor sofa, I’ve always wanted somewhere comfy to sit outside. There’s a gap between the herb garden and the pergola area, that the kids are asking to keep as long grass, although eventually this could become a veggie patch. And finally phase seven or eight would be to spruce up the hidden orchard area that lies beyond the cabin, pop in some woodland plants and tame some of the tangled undergrowth. Oh, and if I could, I’d also pop in a covered porch along the back of the house; we built these in our last two houses and it’s soooo useful to have a little rain-proof area outside your back door, whether that’s to have a clothes airer standing outside, or to nip out to the firewood pile without getting wet.

That’s the plan then – technically more of a dream than a plan, given the issue of my having no idea how to construct it all. But a dream is a starting point, right? And until then… there’s always Pinterest.

Not waving, drowning.

7.30am. The water feels deliciously cool as I walk down the steps into the pool. The kids have been dropped off at the bus stop, and I’ve realised that rather than turning around and going back home, I could keep on driving and get to the leisure centre for an early morning swim. I’ve registered with a local scheme that gives a free swim pass to children with a disability, and to their parent/carer- it’s time to make use of it. I’m not much of a swimmer, but it’s not so much the swimming itself, it’s the noise and splashing and kids jumping in over my head, and the wet floor that brings me out in an overwhelmed, hyper-stimulated anxiety attack. At this time in the morning though it’s quiet, just me and the pensioners. I desperately want to get back into shape, feel fitter and healthier but since my battle with plantar fasciitis last year I’m nervous about putting my feet under strain. This seems to be the right answer; quiet, calm, gentle. My old-lady breaststroke style of swimming is entirely fitting here, fast enough to still count as exercise, yet giving me the space to iron out my thoughts and ease into the day. I begin to get excited; I’ve found something that works for me, 20 minutes of respite, of precious and healthy self-care to start my day with. Can I keep this up during the holidays when I don’t have the school run? I ask myself, feeling that the answer is still a yes. I know I need this.

I swim on the Monday and Wednesday. Friday morning, I’m tired but push myself to pack my swim bag anyway – I want to make this a habit and I know I’ll feel better for it. My membership card scans on the way in and I head to the changing room, only to hear the shrieks of over-excited kids already in the pool. I peek in and see lots of children throwing a ball around in the pool. Evidently, it’s not the early morning session I was hoping for. Back to the desk; Sorry, I’ve only just started coming in the mornings, is it on at a different time? The receptionist explains that the swim session doesn’t start until 8am on Fridays. A 20 minute wait; I decide to head back to the car to retrieve a book to read, given that the cafe doesn’t open until 9 and there’s absolutely nothing to do but stare into space in the meantime.

7.55. I’ve been reading in the car, but now put the book away and head back in for a swim. This time however, my card doesn’t scan. “Can I take a look at your card?” the receptionist asks, scanning it at her desk. “Oh, there’s nothing on your account, you need to pay.” I explain that I’m a member of the free swimming scheme. “No, that’s only if you’ve got the young person with you.”

I leave.

There are tears in my eyes as I stop off at the 24 hour supermarket to pick up something for dinner. I’m struggling not to cry as I drive home. I check the website for the swim scheme. It’s badly worded, talks of free swimming for disabled children and their Carers, but says nothing about it being only when you’re accompanying your child. I even phone up to check.

“Is it possible for the organisation to ask for Carers to be able to swim for free, just to give us some respite?” I ask.

“No, the leisure centres are doing us a favour as it is,” she answers. As if the leisure centres weren’t raking it in already, and also receiving public funding.

“But the over 60s swim for free?” I’ve heard the chatter in the changing rooms – these are pensioners who are not struggling financially. I don’t understand why they can swim for free but Carers can’t.

There’s the bottom line; I can only swim for free if I’m taking Lily. Except of course, I can’t take Lily to the early morning sessions, even if it didn’t clash with the school run; she’s far too loud, too chaotic. There would be complaints. Similarly, it’s hell for me to swim during Lily-friendly sessions; I just can’t bear it when it’s so loud and crowded, that adds to my stress rather than relieving it. I desperately need respite, and I desperately need exercise – but I will have to pay for both. If I managed to get a concessionary swim price, it would be £2 per swim. £6 per week. Over £300 a year. Non-concession, it’s £3, £9 and over £450. Our much-longed-for holiday, in other words. So while I could bumble along paying £2 per swim, I would no longer be enjoying the sessions because I’d be thinking too much about what they cost. It would cease to be me-time and become something I was paying to do in order to get fit. No longer a treat. I should be able to move money around, do it anyway – yet mentally and emotionally something has shifted in a way that’s hard to explain. Perhaps it’s because the free swimming felt like a gift, an acknowledgement that caring for an autistic child is so difficult and here was somebody who wanted to help me in some way. Having to pay turns that into Tough. Get on with it. Perhaps I’ve just reached the end of my rope, can’t take any more knock backs. Perhaps it’s anger at how once again, the people at the bottom of the ladder miss out; if you’re struggling financially then exercise becomes a luxury. Realistically, even “free” activities require money; eg a decent pair of trainers if you’re taking up running, otherwise you’ll wreck your feet.

I’m left feeling like I can’t have nice things. That the Universe has some kind of personal grudge against me, that this has been a pattern for over 10 years now; any time that I find something that makes my life easier or happier, it’s taken off me again. Just a taste, just enough to get excited, then – poof! Gone. That I want to be happy, grateful and generous in this life – but events keep conspiring against me to a point where by rights anger and bitterness should surely be the default emotions. It’s so much work to try and reverse this negative spiral – yet it’s like pushing a washing machine up the helter skelter; crazy, difficult and the minute you try to rest for a minute, it’s going to slide back down and crush you.

A few days pass. I talk to Mum, who does her best to talk sense into me. “That’s only what you’d spend on coffee and cake in a cafe, and it would be doing you good,” she reminds me.

“Yeah, it’s just I’ve taken out gym memberships before and just wasted them, haven’t gone in.” Being surrounded by no-neck muscle-grunters and perky gym bunnies is not my idea of fun.

In the meantime, my blood results come back from the GP; surprisingly my thyroid is working just fine and for once I’m not anaemic – my constant tiredness is a medical mystery. However, I’m now officially in the pre-diabetic stage. If I don’t get my weight, blood sugar etc under control then I’ll likely develop Type 2 Diabetes within the next 5 years. I’ve been wanting to improve my general state of health – the blood results are the final kick in the pants that I need. It’s back to the 5:2 plan, to cutting my emotional dependency on sugar and comfort food and to getting back into shape. Perhaps the lesson that I need to learn is not that the Universe doesn’t want me to have good things, but that it’s time to start looking after myself properly, which means being willing to invest in my health . I call the Leisure Centre.

Hi. I want to take out membership.

Everyday crisis

Sitting in a local cafe, waiting for Ivy to finish therapy and Lily to arrive via the school bus. An overhead light flickers on and off, making crazy strobing shadows on the floor that feel like a horror film. Nearby a mother sits with her clearly autistic son, who having downed his drink now rocks and repeatedly tells her We need to go home now, while she does her best to ignore him, tapping at her phone screen. Finally, her coffee drunk, they get up and leave. I don’t judge her for trying to block him out – I know too well the struggles of having a child on the spectrum and how it wears you down. I do my best to ignore the flickering light, to take this hour and catch up with myself after a demanding week.

Lily’s work experience week did not go well. As usual, she did what she wanted, blanking out or messing around on the tasks that bored her. This time around, my Mum was present for her final day and so Lily wasn’t able to hide behind her usual excuses . Lily still insisted that she worked hard and did her best, meanwhile the office manager apologised to Mum that she wouldn’t be able to provide Lily with a reference as she really hadn’t earned it. After being called in by the manager to check on her because Lily had pinged an elastic band into her eye and was now claiming she couldn’t see and needed to wear an eye patch, it was clear that any plans I’d sketched for the week had to be abandoned; I was on call. By the afternoon of Day 2, the manager sent Lily over to the community theatre group making props in the church hall as it was clear that she was bored and unwilling to do anything else. That had already been scheduled for Day 3 – at which point Emo Lily, with heavily black-smudged eyes and face, argued with the organiser as she wasn’t allowed to play Marilyn Manson as they worked, then took 2 hours for lunch. Day 4, the day Mum was there as a witness, Lily did sod all but roll her eyes and sigh, until the manager told her there wasn’t much point in coming back after lunch. Given the amount of effort that I, Mum and the office manager had gone to in order to set this up for her at the very last minute, it was hellishly frustrating that Lily seemingly put no effort into it. I was just glad that I hadn’t succeeded in setting up anything more challenging – or even anything local – it would be embarrassing to be sitting in this cafe had Lily spent last week messing them around.

Back home and I struggle to teach her to think about others, to take responsibility for her actions and behaviour. I try to get her to understand how disappointing it was that she hadn’t put more effort into work experience when the rest of us had tried so hard for her. Try to get Lily to tell the truth, and to stop making excuses – always the thousand and one reasons why she had to do or not do whatever it was.

I don’t care any more Lily, I just want you to behave.

Perhaps it sounds harsh, knowing that Lily is autistic. Perhaps my expectations are too high. Yet Lily is evidently bright. She can be capable when she wants to be. Most of her behaviour comes down to Pathological Demand Avoidance, needing to be in control at all times and never wrong, an Aspie aversion to transitions and change, plus ADHD-driven inertia, difficulty with both starting and completing tasks. Back in the day she’d merely have been labelled as awkward, lazy, difficult, selfish and defiant. And that’s where it’s hard – she seems capable of so much more, of making better choices, of making more effort. She can do it when she wants to. It’s impossible to know what she’s actually capable of, where the line of autism and ADHD ends and the line of bad behaviour kicks in. Some would argue that it’s all down to her various diagnoses. Others would blame poor behavioural choices. And then there’s the ones who will blame bad parenting.

Yesterday brought a workshop with the local Carers’ group, followed by a meeting with the school SENCO. At the workshop the facilitator dared to say the unsayable; that in many ways, it’s easier with a child who is lower-functioning on the spectrum. This is heresy to some; above all, it’s really not helpful to get competitive over whose child is the easiest/most difficult to manage. Everyone is fighting their own private battles and it’s not possible to weigh up whether it’s worse to have a child who wakes throughout the night, or smears poop, or constantly runs off, or screams abuse at you in the supermarket. Yet she was talking from experience, a son who was more profoundly autistic yet in many ways easier to manage than his sister, whose Aspergers brought constant conflict, tension and verbal abuse on a daily basis. These are the kids no one knows how to handle, the kids on whom no behavioural strategy will work, who can seem bright as a button one minute yet next minute are in meltdown, refusing to cooperate, flying at you in a rage or head butting the wall. Kids who seem capable of getting decent qualifications, of going on to be independent and living their own lives… then have you lying awake with the realisation that they’re not going to make it, they’re just never quite going to manage, that either they will end up getting arrested, sectioned, or spending the rest of their lives still living at home, glued to their computer and arguing about cleaning their teeth or having a shower. Or worse. There is simply no provision for them.

The SENCO meanwhile assured me that Lily was being offered plenty of support in school, but was choosing not to utilise it. That countless times she’d seen Lily ignore the teacher, blank the TA and just refuse to do the work. The same verdict at home, at school, at work experience; Lily only does what she wants to do and kicks off about the rest. It has been this way since she was born. Unusually though, the SENCO took the time to tell me that I was a good mother, even though I generally never get to feel that way. There were the usual concerns of what support are you getting? and an insistence that I need to try and limit Lily’s impact on myself and Ivy. To which the answers are None and How? When I told her that we’ve found the perfect post-16 course for Lily, but it’s in a city over 30 miles away, she insists that I should drop the idea – it will be too taxing both economically and/or physically if I end up having to drive her there, unfairly impacting on both myself and Ivy. She also admitted that Lily was an extreme case, the first time I’ve heard this from a professional. The Early Help scheme was mentioned, and again I reiterated that while I was willing to try anything, I couldn’t access it if it meant that Simon would be informed. Despite the fact that Simon has now absolved himself of any and all parental responsibility (while retaining parental rights, of course), the knowledge that I was accepting help from Social Services would be like handing him a loaded gun and he wouldn’t hesitate to use it against me. Meanwhile Lily has been telling people that she’s been told she’s a psychopath and is just waiting for confirmation.

I sit Lily down for a talk and explain that her behaviour has to improve. That she has to put more effort in. That while ADHD makes it harder to do certain things, like getting started on tasks, it just means that at times she has to force herself to do it, like it or not. That we all have to do things we don’t want to do; I certainly don’t want to get up at 6.30am to drive them both to the school bus stop. She promises she will try harder, and she does, for almost a whole day. When she asks, I tell her she’s been 100% better. Then I discover she’s lied about finishing her Maths homework, neither has she made any attempt to tidy her room. Next morning I have to tell her several times to get up. I tell her she needs to read through her science topic for a test next week; she disappears to her room and refuses to come out. She doesn’t clean her teeth; by rights she should have a mouth full of fillings by now, she’s evidently hit the genetic jackpot. She goes to school without brushing her hair or teeth yet again, and yet another teacher emails me about homework not handed in, meaning that Lily is still lying to me about it. In her room, along with a mouldy apple core, discarded food wrappers, piles of detritus and dirty laundry she has a piece of broken glass by her bed and I know I need to check whether she’s been self-harming again. When I try to tackle her about the homework and emails from teachers, knowing she’s been given a detention over it, the lies continue and she denies it all, meanwhile Ivy chimes in that several of her classmates were there and told her that Lily was screaming at the teacher.

Sanctions are taken; Lily’s computer is confiscated, the WiFi password changed, the PlayStation put away. Result; behaviour miraculously improves, or at least it does until Lily gets what she wants, at which point it inevitably begins to slide downhill again. This time around, her computer gone and access to the internet withdrawn, she snapped at me that no, she wasn’t doing the dishes as requested, as I’ve got nothing left to lose. Battle after battle, day in, day out. The latest? That by trying to ensure she does her homework, I’m triggering her. If excuses were pennies, I’d be very very rich. The situation doesn’t change, only my ability to cope.

There’s over a month to wait before the next CYPS appointment, I don’t know how long before actual treatment begins. School holidays are coming and I don’t know whether to be relieved or scared. The only option meanwhile is calling the CYPS Crisis team, which makes me incredibly nervous as I don’t know what it will entail, whether I will have any say it what happens to Lily at that point. Because also; this isn’t a crisis. This is just what everyday life looks like.

The Psychopath Test

We’ve been at my parents’ house for a few hours and have just been summoned to dinner. For once, Lily comes downstairs relatively quickly – I’m relieved as Dad gets cross if people aren’t prompt to the table. She’s not happy though.

“I’m having a crisis, Mum,” she whispers.

“What is it, love?” I ask, hugging her. “Did you and June split up?” That’s the worst, most obvious thing I can think of. I run through more possibilities; online trolling, bullying, discovery of a large gangrenous tumour. Once I’ve gone over the worst options, I turn to humour – this is what works best with Lily. “Has your leg fallen off and you can’t sew it back on?”

“No, it’s still here.”

“You’re about to be arrested for drug dealing?”

“No.”

“Someone discovered the body?”

“No.”

“You’ve finally realised you’re an alien?”

“Well yes, but that doesn’t bother me.”

She refuses to talk about it within earshot of my parents, and dinner is ready so I’m forced to wait until after we’ve eaten, wondering what on earth it is. I figure it’s YouTube-related, another spat with someone over videos and comments that should never have been posted. When dinner is over I track her down and she hands me her tablet to watch something. Yes, it’s YouTube, but rather than a flame war it’s a series of videos with titles like Are You a Psychopath, and The Psychopath Test.

Lily has been watching them and is now worried that she’s a psychopath. I have no idea how I’m supposed to handle this one. Perhaps I should have just laughed it off, told her it was a load of rubbish and not to worry – yet to me, that comes across as not really listening to her fears. She insists that she wants this investigated further, and I try to reassure her that she will be able to talk about to the the psychologist at CYPS when she has her appointment. I tell her the videos are sensationalist and irresponsible, and the very fact that she’s concerned enough about whether she’s a psychopath is probably proof that she’s not a psychopath. That she’s 15, her brain isn’t fully developed yet, particularly when it comes to feeling empathy – that this is true of all teenagers, who are notoriously horrible to deal with but inevitably grow out of it. That she has Aspergers and ADHD, which accounts for a lot of her concerns. That liking black coffee and dark chocolate does not make you a serial killer, that much of the “science” being quoted is incomplete or misrepresented and used out of context. That only a trained psychologist or psychiatrist would hold the answers to any of this, not some random YouTuber.

We talk about lying, and that I think it has become a problem for her. She admits something I’ve long suspected – that when she tells a lie, it somehow becomes true for her. I tell her that this is something I just don’t understand, that she must surely know that it’s not true. We discuss how Simon’s lies in court were so painful to me, that effectively he became sociopathic, lying to manipulate and achieve what he wanted, and the hurt this has caused. We talk about how Lily struggles to accept responsibility and tends to blame others for anything and everything. That again, these can be issues with ASD/ADHD and don’t mean that she’s a psychopath. That not all criminals are psychopaths and not all psychopaths are criminals – although a great many world leaders and CEOs would fit the criteria, particularly Trump. I try to explain that none of us are perfect, we all have our character flaws and that being aware of our issues means that we can try and overcome our difficulties – that we should all try to be the best we can and to make the world a better place. Lily admits she doesn’t really feel guilt or remorse over her wrongdoings, that she doesn’t really care how other people are affected as long as she gets her own way. I don’t tell her that I’ve secretly had concerns when her patterns of behaviour match Simon’s; lying, blaming, lack of responsibility and remorse, that I’ve wondered whether she will be abusive to others in this way as she gets older. Going down that line of thinking wouldn’t be helpful to anyone at the moment, least of all Lily. She’s 15 and incredibly immature, with an autistic spectrum disorder, ADHD and anxiety and control issues thrown in on top. She’s growing up with all of this, plus epilepsy and gender identity issues on top of the usual teenaged angst, school, homework, exams, dating etc. It’s enough.

I tell her it’s a bad idea to watch these kinds of videos. That she’s my baby and I love her and don’t think she’s a bad person. That she’s still got a lot of growing up to do and it’s too soon to tell who she’s going to be, but it’s not likely that she’ll suddenly become a mass murderer; not that all psychopaths are killers anyway. Afterwards, sitting outside in the shade of the evening, I wonder whether I’ve handled it the right way or not, whether I should have laughed it all off, refused to give it any credence. In reality, Lily’s behaviour over the past few months has been so extreme and bizarre that I can’t just shrug it off. We both know that she threatened me with a knife, that she’s been claiming she can see demons and shadowy figures in the corners of the room, that she was self-harming. I’ve been going from one doctor to the next trying to get answers, while school pushed through with a CYPS referral. My main concern this week is how well she’ll cope with her work experience, not whether or not she’s a psychopath – but now her worry over it becomes my issue to deal with.

Is this normal? I find myself wondering. Is this a thing now, do most teenagers question whether they’re psychopaths or not? I don’t remember ever worrying about that when I was a teenager, but then I didn’t have YouTube. No doubt someone put those videos up for a laugh, for entertainment, a bit of click bait. Sometimes I wish the Internet had a caretaker – that sounds so much gentler than Internet Police – someone who would go through content, quietly deleting the hate, the trolling, the misogyny and porn, the racism, violence and general crassness; all the stuff that’s basically not helpful when you’re trying to raise kids, never mind live in this world yourself. This is new territory for all of us, the biggest global experiment ever, and at times it’s like watching a baby playing with scissors. Lily struggles to manage as it is, and I struggle to manage with her. Go gently, I try to remind myself, but the internet is not a gentle place and the internet is shaping my children.