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.

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.