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.

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.

Praying for rain

It’s been ridiculously hot. June passed without a cloud in the sky and no real rain, only the tiniest drizzle. For anyone trying to create a garden, this was not good news. The ground is too sunbaked to dig, and the new plants are desperate for water – I’ve lost count of the treks through the house with dripping watering cans in each hand. While I should no doubt count my blessings for the glorious weather, I’m craving rain. If the patterns of recent years can be relied upon, the good weather will continue right until the last day of term, when the heavens will open for the entire summer holiday. This will continue until the start of the September term, proving rubbish for those of us whose holiday ambitions stretch no further than a cheap camping expedition – then when the kids are back at school we’ll be treated to an Indian summer.

Truth is, I’m not great in the heat. I’m not great in the cold either, I’m an entirely temperate being. Dappled shade and a light breeze are what suit me best. I can’t think straight in the heat, can’t bear to cook in an already over-heated kitchen, hate driving in an oven of a car. If life consisted of siestas and ice cream and dabbling my toes in a stream, it might be bearable. Sadly, life continues on the same, heat-warped rails; school run, housework, shopping, cooking, driving. Oh, and fire-fighting.

The fire-fighting is getting tedious. Another week, another battle with school. Having just achieved some measure of satisfaction over Ivy’s need to switch teaching groups, the next problem arrives. Lily is supposed to be doing work experience for a week. This was all supposed to be sorted out before the January deadline, as Lily decided she would help with lighting and sound for the drama group production, a role she fell into by default last year when Simon didn’t return the forms for her much-wanted European trip in time. I figured it wasn’t exactly work experience but gaining further knowledge of the technical desk would be good for her and tied in with her music technology GCSE.

Two weeks before work experience is due to start and Lily tells me that school have told her she can’t do it. Cue panic, and much phoning and emailing. School insist they gave Lily this information back in January, and from what Lily says, I realise that everyone’s wires have been crossed. What they actually seem to have said to her was that “it might be difficult.” To an ASD/ADHD child, that doesn’t count as a No. Only a No counts as a No, and even then Lily might decide to take it as a Maybe. School insisted that they had given Lily further support to set up a placement, while I tried to point out that clearly they hadn’t – if she had been given enough support, then she would have a placement. The fact that she didn’t have a placement in two weeks’ time, was fairly obvious proof that not enough support had been provided. And for the love of God, why had nobody contacted me about it? This was information I should have been given months ago, as an SEN child is evidently going to need extra help when it comes to securing a suitable work experience placement.

So then, two weeks of last minute panic and stress trying to find something for Lily to do during work experience week, so that she didn’t have to stay in the school library doing extra Maths the whole time. Plus making sure that Ivy was ready for her European trip at the same time, which involved a major shopping expedition. Plus trying to buy a new secondhand car. Plus taking a friend to hospital appointments. Plus, plus, plus. Asking in different shops and cafes whether Lily could do her work experience there, knowing that it was all too late to be arranged properly. Over a hundred miles away, my family were doing the same – but it seemed to be work experience week across the nation, and the most likely places had long since been snapped off. Eventually, Mum managed to secure a few days at her church’s office – not something that Lily would have chosen for herself, but definitely better than extra Maths. The forms were frantically emailed back and forth, arriving on the teacher’s desk on Friday afternoon, with work experience due to start that Monday. The weekend disappeared in a flurry of driving – back down to the city for a college open day for Lily, then home, dinner, and over to the town where school is, as Ivy had thankfully arranged to sleep over at a friend’s house to be closer for the 3.15am drop-off for her trip. Then the four hour drive north to be at my parents’ house for Lily’s work experience, my own appointments for that week cancelled, including a place on a Photography workshop that I’d been looking forward to for ages.

There are times when it feels like all I do is complain. Times when I think I’d like this blog to be all light and fluffy and day-dreamy gorgeousness. But my life doesn’t look anything like that. Having a child with additional/special needs means that life is never going to be straight forward, never mind fluffy and gorgeous. Yes, I try to cherish the moment and remember to count my blessings – but life would be so much easier if schools created decent SEN policies. It’s hard enough trying to cope with a child who has significant behavioural issues, without having to constantly battle to have their needs met at school. To find several teachers have written in Lily’s end of year report that she needs to pay more attention in class – meaning me pulling my hair out in the kitchen as I read it because for Christ’s sake she has ADHD and needs a support worker to keep her on track and I thought we had this sorted out back in Year 7 and now you’re telling me that most of Year 10 has been wasted because you’ve withdrawn that support without telling me and I’m only finding out now when it’s too late?

In the same way that the garden is longing for rain, I’m thirsty for understanding. For compassion and consideration. For ease, for all of it instead of this continuous fire-fighting battle that I’ve been on for the past 15 years. Because I know it’s not just me – pretty much every parent of an SEN child is fighting the same battles, week in, week out. Fighting lack of resources, lack of funding, as well as lack of compassion and imagination. Fighting the tired old cliche that they can’t make exceptions for one child, despite the fact that they need to. Fighting the poor communication, the not being kept informed until it’s too late to do anything about it, the not sticking to agreements that you thought were already in place. And so this week; far more stress than I needed, entirely unnecessarily, and over 300 miles in a dodgy car that might or might not make it home again, while my garden shrivels in the heat and everything is postponed. I’m actually still waiting for the phone call from the teacher responsible that I was promised two weeks ago, the I’ll get back to you. I’m sure that school has written me off – I’m that angry, neurotic mother, always complaining about the lack of support given to her precious Snowflake children. That what I’m saying will be ignored, because most parents never make a complaint or request a meeting, therefore there must be something wrong with me. If only. I’m so over school, so fed up of the ridiculous pressure being placed on us for 100% attendance, never being late, homework always being handed in on time never mind how much has been set or what plans you have made or what’s going on at home, having the correct and expensive school uniform and PE kit, constant demands for money for this trip, that trip, music lessons etc.

I’m longing for the rain. I want to step outside in an evening downpour and feel the cool, refreshing shower wash over me. I’m longing for my parched garden to get that nourishing soak it desperately needs. Longing for life to feel like a cool glass of water instead of a wildfire.

The gift of an ordinary life

I think I might just have got the very thing I’ve been asking for for a long time; a week where nothing happened. Granted, it was preceded by a mental health crisis that I could have done without, but then there was definitely almost a week where there were no new problems to deal with. I cracked on with the garden, the housework, trying to catch up in general. It was bliss. This is what normal must feel like, I told myself. With the weather being so beautiful I’d persuaded the kids to catch the bus to and from school, which meant a much earlier start in the morning but resulted in so much more time and energy for me.

Of course, it couldn’t last. I made every effort to let the Universe know how much I appreciated the gift of a quiet, ordinary week in the hope that I would continue to be so fortunate, but no. Normality resumed. The quote for the shower came in around £500 more than expected. A phone call from school to let me know that other parents were expressing concern about Lily’s behaviour in class, given that she spent the whole time talking about being a vampire, seeing demons and being in possession of a Deathbook, all of which caused too much disruption in class to be tolerated. The CYPS crisis team had been contacted and were expressing concern that Lily’s epilepsy medicine might be behind what appeared to be some kind of delusional psychotic crisis, and the teacher urged me to contact them myself. Why? I found myself thinking. This is just normal for us. None of it is actually real, it’s more that Lily is now play-acting to an absolute extreme. A second call the next day to say that Lily had spent her IT lesson refusing to do any work, insisting instead that she needed to use the internet to help solve a murder in Utah. Thank God it was the last day of term, although the pastoral teacher didn’t think I was going to survive half term looking after Lily on my own and ordered me to make an appointment with the GP as soon as possible. All of this happened while I was in the middle of a meeting with a local charitable organisation in the hope that they could help me get back into work. Frankly, it did nothing but prove that a job would be impossible to handle right now.

The plan was to head up north to spend a few days with my family and celebrate my Dad’s birthday. We set out over an hour later than I’d hoped, because of course Lily had decided to get the late bus home from school so she could do her music, despite knowing we were heading out on a long drive. Similarly Ivy hadn’t bothered to pack the night before as requested, and the minutes slipped by later and later while I despaired of ever leaving, knowing how tired I was going to feel with a five hour drive ahead of me. Almost as soon as we set out though, the car started flashing up error messages; faulty brake light. Error; Anti pollution faulty. The car was struggling to get up to speed, feeling sluggish and juddery. I pulled into a garage to double check my air pressure, in the hope that this would magically transform the performance of the entire vehicle. No such luck. By the time we got onto the motorway, it was clear that the car wasn’t going to make it. Instead, we came off at the first junction and headed for home. This is after the car breaking down on the motorway in February, after paying to get through the MOT in January and after replacing the clutch last Autumn, plus repairs to the radiator. I did my best to get the car fixed on the following day, but the garage weren’t able to solve it in time before closing for the bank holiday, leaving me with a car that wasn’t behaving well enough to undertake any serious driving. Half term, bank holiday and we were stuck. The trip north was cancelled and neither could I risk any of our usual day trips.

Meanwhile Ivy has been falling apart over being placed in a new teaching group without any of her friends. She’s had such a hard time in the last couple of years that I’ve contacted school to ask if she can move classes – of course, all I’m getting back is the tired old we can’t make exceptions for one child or we’d have to do it for everyone. Oh really? So if she had hearing or sight difficulties they wouldn’t arrange for her to sit at the front of the class? Ivy has severe anxiety, probably ASD-related, and is still recovering from depression. I’m doing my best to explain to school that this grouping means putting her through further stress and anxiety, including IBS and nausea, so loss of appetite and skipping meals, insomnia and fear about going to bed, plus inability to concentrate in class, inability to raise her hand or answer questions, inability to contribute to group learning and projects, while struggling to control her breathing and fight off panic attacks. It’s taken so long to build up her confidence after all the trauma, and I’m tired of having her knocked down again by either Simon or school. But schools nowadays just close ranks; it’s all about conformity and saving face, there’s never an admission that they’ve made a mistake, there’s no compassion or flexibility. She spent most of today in tears and I’m tired of being fobbed off. So; yet another battle. And now Lily is intent on being “L” from Deathnote, at home, at the supermarket, at school… and now the Tax Credits form needs to be filled out, and so on and so on.

Please stop, I beg the Universe. Please, no more. Give me the gift of an ordinary life, just long enough for us all to recover. Outside, the roses are blooming; can’t we just stop for a while, long enough to smell them?

Breaking point

I’m painting the fence bit by bit, stopping before my body aches and demands a break. In general though a break would be good. Any kind of break, except for the ones involving bones or water pipes. A lucky break; the Lottery, please. A holiday break. But most of all a break from constant problems. Even just a week or so in between problems would be nice, but no, they keep on flying relentlessly towards me like oversized gnats with fangs and awful body odour. So, on the happy happy day that I got my new boiler, I also got a call from school to ask whether I was aware that Lily was self-harming and appeared to be having schizophrenic episodes?

Oh boy.

Please, just a week? One week without fresh trouble? One week in which to live as close to normal as is humanly possible?

No.

Lily insists she can see shadowy figures appearing in her bedroom, that someone is there, in the corner of her eye, taunting her. She’s using a shark’s tooth I gave her years ago to carve deep scratches in her arm and hands, says she enjoys it. Says she feels like she’s losing her mind and that most of her friends are too, and that the scratching makes it feel better.

None of this is good news. And if it was Ivy saying this, I’d be freaking out and rushing to the nearest child psychologist I could find (although frankly, referrals are rarer than unicorn eggs in our overstretched child mental health services.) But it’s Lily and therefore much more complicated. We’ve just come through a couple of months in which Lily has been lurking in the shadows, complaining that the sunlight hurts her skin – thankfully this was Winter, so there was precious little sunlight to deal with. Momentary concerns that this was due to a reaction to her epilepsy medication were pushed aside when Ivy explained that Lily has been writing her own manga comic about a Japanese vampire. She’s also been putting a considerable amount of effort into learning Japanese, and has mentioned a few times that she likes the taste of blood. So – no side effects, just Lily playing out being a Japanese vampire. She’s been asking for a parasol to keep the sun off her face – this has also been inspired by Abby, her favourite character in NCIS, who doesn’t seem to venture outside without a parasol and ear protectors. The inside of Lily’s mind must basically look like an acid trip, all neon colours, dancing squids and fantasy and reality blurring into one.

Lily has recently decided that she is now an Emo; all black clothes, Panic at the Disco, My Chemical Romance and such. Combine this with a bit of a wave of self-harm passing through school, a few friends with issues, and there we have it; Lily’s latest obsession, played out in all its glory. Hello Aspergers/ADHD. In the past it was cars and dinosaurs, now it’s Emo, madness and self harm. And although the scratches are disturbingly real enough, I suspect the madness is make believe. Except of course, it’s complicated – Lily then believes her own fabrications. What she invents then becomes real to her; she will swear blind that she really really did go to a parallel Universe and discover that she was actually dead in that reality. It really happened, and woe betide anyone who dares suggest that it didn’t. So how on earth anyone can start to unpick whether or not she’s really seeing people in the corner of her room, whether she really is losing her mind or whether she’s playing out an elaborate fantasy, I have no idea.

Another day, another call from school. Lily has been banging her head against the desk in an alarming and bewildering way. She’s threatened to cut someone’s throat. She’s been belligerent in class and answering back to staff. Her cuts are seeping through her school shirt – are they fresh scratches or has she been picking at the scabs?

I don’t know. I’ve run out of answers when it comes to Lily. Even though I suspect it’s make believe, I feel I’m in way over my head. The school nurse calls me in for yet another chat – there are probably some lucky parents who don’t even know that the school has a nurse. “I know it’s not my place to say this,” she tells me, “but I found I was questioning whether this real or not?”

I nod. “I don’t think it’s real,” I tell her. The trouble is, I don’t have a clue what to do about it. The scratches on her arm are too obvious, she’s been showing them off rather than hiding them. But still, they’re there, and it must have hurt.

“I always tell parents not to worry about it so much if you can see the marks,” the nurse reassures me. “It’s when they’re doing it more in secret that it’s a problem.” Although thinking about it, how would you know if they were doing it secretly?

Not real and yet all too real.

What do you do when your child is pretending to have schizophrenia? This is now just the latest problem, the new normal. Something has gone wrong with the kitchen light switch and none of the lights are working, I’ve rigged up a lamp so I can see to cook and wash up. The shower still isn’t fixed and I need to chase up the builders for a quote. The car is making a strange noise. Lily’s still not doing enough homework. There’s a damp patch in the hall. Ivy’s nervous tic has returned. A garbled message is left by the Child Maintenance Service, sending me into a panic that Simon’s found another way to pay less. One at a time, please.

I need a break from adulting. I’d like to resign, at least for a week or so, put my hand up and admit that I don’t know what the hell I’m doing. This is the reality of single parenting. I can’t go to Simon to discuss Lily’s problems; this is a man who has previously written to doctors to try to undermine Lily’s diagnoses when he thought her disabilities might get in the way of his plans to sell the family home. Instead, I worry that he will see her arm and call Social Services again; ammunition is more important to him than Lily’s wellbeing. It breaks my heart that it’s come to this, that the father of my children can’t be trusted to do right by them. That the responsibility for their wellbeing now rests entirely on my shoulders, the double whammy of hoping that I can do a good job of raising them while worrying that not only am I failing, or unable, but also that any mistakes will lead to further attacks from Simon. Parenting is hard enough without the other parent actively working against you.

Thankfully, a letter arrives from the local Young People’s Services offering us an initial appointment after a referral from school. Successful referrals are so rare that this is truly miraculous. The fantasy is that this will lead to Lily getting the help she needs. The reality is that it might go no further than this initial appointment. Fantasy, reality, normality. It’s not just Lily who feels she’s going mad, at times my head feels under so much pressure that I’m sure my skull is going to crack; the wrong kind of break. I’ve been at breaking point so many times in the past couple of years that broken feels normal.

Last Autumn the fence blew down. Ivy helped me to repair it, hammering new posts into the ground and patching up the broken, rotting fence as best we could. This past week I’ve been painting it, trying to make it look nicer while wondering whether I’m wasting my time, whether it will make it through another winter. Knowing I don’t really have a choice, I can’t afford to replace it – I’ve just got to make the most of what I’ve got. The pretty sea-green paint now reaches halfway down the garden, post by post, brushstroke by brushstroke, plodding on with it when I can. The broken fence was a problem; we dealt with it, and for now it’s holding. For now, I’m making the most of it while it lasts. For now, I’m being the best Mum I can manage to be. Maybe Lily really does have schizophrenia, or maybe this is the follow-up to the Japanese vampire phase. There’s no break from any of it; the challenge is learning to accept that and carry on regardless. That broken fence isn’t going to fix itself. No one else is going to paint it for me either. Just keep going. Paint while the sun shines, hang a lamp so you can see in the dark.