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.

The Holy Grail and the Myth of Support

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“I’m just going to pop out for some Support, what could possibly go wrong?”

My God, I’m struggling.

“But you’re coping,” my Mum tells me over the phone.

“I’m not, I’m really not,” I answer, thinking of how every surface in the kitchen is covered in dirty dishes, that the living room is an obstacle course of clutter and empty cardboard boxes from the most recent DIY session, that every single room in the house is a mess, that none of us has had a shower all week, my grey roots are showing like a badger stripe, the kids aren’t keeping up with their homework, we’re risking intervention by the Attendance Officer due to Ivy’s recent bout of school refusal, Lily’s behaviour is becoming more and more problematic, I can’t get to sleep then wake at the crack of dawn so I’m permanently tired, that my heart feels like it’s racing out of my chest all day every day, I’m always on the verge of a panic attack, I look like a bag lady and also my car is now falling apart. The boiler is broken so there’s no heating or hot water, the shower is broken so we can’t wash properly, and I’m getting increasingly scared that the roof might need work too. Things are really not good.

“But you are,” she insists. “You’ve kept on going where others would have crumbled. You’re not hiding in a corner, refusing to come out.”

Hiding in a corner refusing to come out is exactly what I want to do. Before I even open my eyes in the morning, the wave of despair and nausea hits me. I can’t even bring myself to write my daily list of Gratitudes any more, having spent one evening scrawling I hate my shitty life all over my journal. The only reason that I haven’t taken to my bed and refused to come out is …drumroll… fear. Ah yes, fear and its cousin, anxiety, my constant companions of these past four years. The only reason I’m getting up and carrying on is the fear of what will happen if I don’t. Fear of further trouble with school, of social service intervention, of what Simon might do next if he suspects that I’m struggling to cope. Fear is not a great foundation to structure your life around; it’s exhausting, depressing and soul-destroying. Yet there it is – my life is a life spent in fear. Fear of what will come next. Fear that Simon will find yet another financial loophole and cut the child maintenance again, or another spurious reason for taking me to court. Fear that my kids are falling apart after everything we’ve been through and that I’m failing to get them the help they need. Fear that one or both of them will resort to self-harm, alcohol or drugs, even suicide. Fear that someone – Simon, probably – will report his concerns to social services, resulting in a dawn raid and child welfare officers inspecting every last messy, cobwebby corner of my home; this happened to a family I know, whose only crime was that their neighbour didn’t understand that they were home-educating. Fear that I’ll get into debt and potentially lose the house because of the costs of fixing the house up in the first place. Fear that I’m basically fucking up in ways that I don’t even know about yet but which are guaranteed to bring disaster to my doorstep.

Given Lily’s most recent episodes of challenging behaviour, which include threatening me with a knife, locking herself in her room with said knife, plus an increasing refusal to cooperate with even the basic tasks of cleaning her teeth and brushing her hair, school are keen to refer us to Early Help. From what I can gather, this is a low level of Social Service intervention – the soft, fluffy side of the SS, as it were. It would involve meeting a social worker to put together a CAF identifying the needs within the family – from prior experience, this would actually involve endless meetings with several different social workers as they keep quitting before the job gets done. Countless form-filling. A lot of box-ticking. And a whole lot of promises, most of which are never fulfilled due to staff shortages or funding falling through. It would also involve school informing Simon.

Ah. No, no, and no again. This would basically be handing Simon a nice shiny dagger so that he can stab me in the back far more effectively.

“Legally, we have to inform him as he has parental responsibility,” the pastoral teacher informs me. I want to scream. No. No he doesn’t have parental responsibility. Ivy hasn’t seen him in over a year, at her request, and he kicked Lily out of his house last December. In real terms I’m bringing the kids up on my own. Simon pays child maintenance and takes Lily out to lunch once every few weeks; that’s not parenting. The endless round of shopping, cooking, washing up, laundry, school runs, cleaning. Doctors, dentists, therapists, parents’ evening, pastoral meetings, endless chauffeuring. Nagging about homework, bedtimes, teeth-cleaning and showering. Making sure that they have fully-equipped pencil cases, that music lessons are paid for, school uniform provided, new trainers bought for PE. Listening to their problems, to their constant stream of chatter about TV shows, YouTubers, memes and bands. Straining the budget to try and provide the occasional treat, trying to give them positive experiences, good memories. Trying to provide them with the love and stability they need. Worrying. More worrying. Breaking up the fights. Begging them to help out occasionally. Guiding them through the angst of growing up. Always feeling that you’re never quite good enough, never quite managing enough, could never ever give them the childhood that they deserve, the perfect world you want them to live in. That’s parenting. If Simon had Lily to stay at his house for even one night a week, I would have to bite my tongue and accept his involvement. School makes a lot of noise about safeguarding; I understand how and why informing Simon is a legal obligation, yet ultimately it puts the children and myself at risk of further emotional, psychological and financial abuse. The only person they’re safeguarding is Simon.

We need support. I know from bitter experience that support is hard to come by. Both of the kids need more help than they’re getting, both of them have had referrals knocked back by CYPS – the Children and Young People’s Services. From what I understand, CYPS are now so over-stretched that they’re only taking on new referrals once your child has actually committed suicide, or so it seems. I’ve been taking Ivy to the GP for well over a year now for her anxiety, depression and OCD behaviours- all we’ve had is a referral to a local charity that offers a limited number of free counselling sessions. A couple of weeks ago we left the GP’s office feeling thoroughly patronised and frustrated after he more or less entirely ignored Ivy, didn’t ask her a single question, but told me in front of her that she “wouldn’t get any help unless she took a knife into school and threatened to kill herself.” That no help would be forthcoming until she was in crisis.

“How would he know whether or not I was in crisis” Ivy later pointed out, “He didn’t ask me a single question.”

I pointed out to him that his “advice” ran entirely counter to the advice that would be given to an adult with the same symptoms. No adult would be sent away with a pat on the head or be told that they wouldn’t get help unless they took a knife into their workplace and threatened to kill themselves. They’d immediately be referred to counselling, given medication, signed off work, encouraged to get all the support that was available. The sad reality is that, locally at least, there is absolutely no support for young people; the happy result of Tory cuts. This current generation of young people are having to endure a ridiculous amount of academic pressure in terms of both performance and attendance, record numbers of family break-ups, economic and environmental meltdown, and increasing global and political instability as well as watching the rise of the Far Right, racism and misogyny. I thought my teenager years were hard enough, my family’s various crises as bad as it got, my school as demanding as it was possible to be – I was wrong. My kids have got it harder. It’s heartbreaking to realise that their childhood is in fact harder than your own, their experiences worse, your ability to help them diminished.

Support then, is limited to whatever charities have sprung up to fill the gaps, or what you can pay for. Money might not buy you happiness, but it sure as hell solves a lot of problems. I’m paying for therapy for Ivy while watching Lily’s behaviour get worse; I’ve been trying for over ten years to get Lily the help she needs, with no success. I can’t even afford to pay for a dyslexia specialist to assess her, something which should surely be happening automatically in schools rather than being left to parents to pay for. How can anyone on benefits afford to pay around £500 for a dyslexia assessment for their child? Or £40 a week per child for a therapy session? No one should be told to wait until they’re in crisis before seeking help, let alone a child. No one should be in the position of being afraid of seeking support because that would mean the potential involvement of an abusive partner, or fear of reprisal. I’m left scared of taking up the offer of Early Help, particularly as there’s no concrete proof that it will result in any tangible help – yet I’m also scared that if I don’t willingly sign up to it, it will only take one more inevitable incident with Lily before school goes over my head and makes a referral to the not-so soft and fluffy element of the social services. Damned if I do, damned if I don’t. Meanwhile I’ve lost count of the number of people who have asked me “What support are you getting?” and reacted in alarm when I answer None. “Oh, but you need support, you must get support,” as if Support was something you could pick up off the supermarket shelf like a can of beans.

Yes. I am painfully aware that I need more Support. I am aware that my children need more Support. But unless you’re actually going to offer me some Support, you’re really not helping. Support for too many families has become a Holy Grail, a mythical unicorn that everyone has heard of but no one knows where to find. Or worse – that setting off on the quest of finding Support will bring further danger rather than help, Ralph Fiennes being imprisoned as a suspected spy while Kristin Scott Thomas lies rotting in the cave with her broken leg. “I’ll just pop you down here while I go and seek some support.” What could possibly go wrong?