Meltdown

I’m in the supermarket with Ivy when my phone goes – Lily’s college. Already I’m striding towards the exit as I answer, my heart beating faster. Last week the call from college was because Lily was having a seizure, meaning dropping everything, abandoning plans to have dinner with my parents and instead driving 90 minutes to reach her in A&E. Has she had another seizure?

Instead her tutor asks me if Lily has been in contact. She hasn’t, and he explains that there’s been an incident, and Lily has stormed out of college following a heated argument with one of the tutors. Her guitar had been slipping out of tune and he’d told her to use one of the spare guitars. I wince – this was Lily’s first day with her brand new guitar, she’d been looking forward to it. I knew that her anxiety levels would have been going through the roof if there was something wrong with it, or if she feared that she wouldn’t be able to use it. She needed things to go right, to be given enough time to tune it and continue playing, for her to keep control of the situation. But now the immediate issue was that she had run off into the city on her own, leaving her belongings behind her.

Ivy and I both try calling and texting her, but there’s no response. We realise she probably doesn’t have her phone on her, it would have been in the bag that she left behind. I call the college back and let them know, trying to reassure myself that she can’t have gone far without any money. She’s likely just sitting it out somewhere nearby, waiting for the class to finish before she goes back in for her stuff. Her tutor kindly offers to go back outside to look for her again, and shortly afterwards I get a text from Lily to tell me she never left the building and is now sitting on the stairs talking to her tutor.

The immediate panic is over, but now it’s time for the longer term consequences.

It takes me over two hours to try and calm Lily that evening, she tells me she is traumatised and becomes angry and aggressive as I try to get the story out of her. In the course of the conversation it becomes clear that she was aggressive and swearing at her tutor, and that she threw a chair – not at him, but not a good idea in a college that’s packed full of expensive musical equipment. Lily sobs as she recalls how her band went on practising without her, “They don’t need me, I’m useless,” and that she has no friends and thinks everyone hates her. To prove this, she shows me an abusive message she’s received from another student, she doesn’t even know how he got her number. She doesn’t know if she can face going back, and I make it clear that she has no choice, she has to remain in education. That she has loved this course so far, and it’s stupid to throw it away over one session that’s gone wrong.

Approaching 10.30 I tell both kids that they should be asleep by now, they need to settle down. I usually do this around 10pm every night, but I can’t force them to actually go to sleep. Around half midnight I hear Lily’s door as she goes to the bathroom, and know that yet again she’s stayed up too late. Lack of sleep is one of the likeliest causes for epileptics to have a seizure, but nothing I say can get Lily to go to sleep early enough.

Next morning she doesn’t get up on time and I have to wake her and tell her she needs to go in. Typically, she flies downstairs at the very last minute, swallows her epilepsy tablets – I have also just discovered that she’s run out of her 500mg pills without telling me, another thing to sort out today – and grabs the decaf coffee, breakfast bar and apple that I’ve left out for her. She refuses the sandwich I’m trying to make for her – I’ve also discovered she’s been skipping lunch in order to save up money, but can’t be bothered to make herself a packed lunch instead. So basically, she’s been going into college each day without enough sleep, no breakfast and then skipping lunch. It’s disastrous for her epilepsy, and likely contributed to her seizure last week, but is also likely to be making her even more irritable and irrational. I get her to promise that she will have lunch, and remind her that she needs to apologise to her tutor, before getting her out of the door on time at 7.30.

By the time I’m driving Ivy to school an hour later, I’m fighting back tears as I try and chat to her while simultaneously mentally rehearsing my To Do list. Go to the GP surgery to sort out online access and get an emergency prescription. Call college. Call the Family Support Worker, even though I don’t have her number, how can I get her number? Does Lily need a further diagnosis, how can I get that, no one will listen? Write the cover letter to the CMS and send the evidence, hopefully the letter I requested from our previous support worker will arrive today. Call and cancel that subscription before I get charged for it. And so on, to infinity and beyond.

Driving home, I park and walk into town to sort out everything at the doctor’s. Of course, the GP doesn’t sign off prescriptions until late in the afternoon, so I will have to go back this evening and hope that the pharmacist can fulfil it without having to wait to order it. I’m walking back through town when my phone goes – it’s college. The man on the other end tells me that he has no choice but to suspend Lily. He tells me that the tutor is terrified, that Lily threatened to kill him. I ask whether it will just be a day’s suspension, whether she will be able to go back next week, or whether it may escalate further, and he admits that he will be undertaking an investigation but that Lily may well be expelled. I’m left begging him not to expel her, swallowing back my tears and my pride. “She’s sixteen,” I find myself saying, “if she gets kicked off the course, she’s got nothing, it’s game over, please don’t expel her.”

He fobs me off and I know from what he’s saying, his tone of voice that it’s already highly unlikely that Lily will be allowed back onto the course. The course she loves, that has lit her up for the first time in her life. Once again she’s not been provided with the support she needs, then been blamed and punished when she’s failed to cope; but now this is not school and the consequences are far more severe. Even I find myself blaming her, For God’s sake Lily, why can’t you behave yourself? Why would you think it was okay to behave like that? In the space of a few mindless minutes, Lily has destroyed the thing she loves most, the college course I’ve spent so much time and energy to get her a place on, the opportunity that we relocated for her to have. The pavement beneath me feels like quicksand. There are no second chances and I have no idea what happens to us now.

Moving

Flurries of activity; sweeping through the house like a dervish, decluttering, cleaning, tying loose ends together with the help of the plumber and builder I’d procrastinated about hiring for a full year. Finally a working shower, a new back door. Countless trips to the charity shop, to the tip – sorry, recycling centre – with sacks of garden waste, broken electronics, two no-longer-working lawn mowers. Lily refused to give up the ancient armchair that she had utterly destroyed by squatting on during her “L from Deathnote” phase. She sat in it defiantly strumming her guitar while I asked her repeatedly to drag the bag of garden waste round to the front of the house ready to go to the tip. We were moving in a couple of days, everything had to be ready for the packers – because yes, I went all out and hired a removals firm to pack our belongings as well as shift them. It was well worth the price of my sanity, plus the house was so small that there was nowhere to put the boxes in the meantime! Ivy insisted on packing up her own room in advance, using up all the boxes we had. Lily tried to insist on doing the same, but 3 days before the packers arrive we discovered her room was a maelstrom of belongings, clothes, papers, rubbish, piled high and strewn across every surface.Thankfully she grudgingly accepted Ivy’s help in getting her room cleared (I was not allowed in her room, and too tired to argue with her), the wheelie bin crammed full of junk after a couple of hours of Ivy’s Marie Kondo style intervention. I could hear their voices through the bedroom door, Ivy patiently asking Lily to focus on whether she wanted to keep a particular book, while Lily hit distraction after distraction as she re-encountered childhood favourites; “Oh wow, look at this Corvette!”

Miraculously, the house sold within 4 weeks – after the first wave of potential buyers came through and dismissed it as “needing updating,” a young woman fell in love with the quirks of our tiny Victorian terrace. We had an offer accepted on a house near to Ivy’s new school, only for the seller to pull out the week after I’d spent £500 having a survey done. Although it was brutally frustrating, the survey then showed up major problems with the roof, and the vendor pulling out made the decision for me rather than having to agonise over whether to continue with the purchase. Moving 150 miles away meant that house viewings had to be arranged with military precision – a Folder of Organisation accompanied us at all times, potential viewings pencilled into half hour slots, my phone buzzing with return calls from estate agents. We stayed at my parents’ house, about an hour away from the town we were hoping to move to, spending several weekends endlessly driving around while Ivy clutched the Folder of Organisation and we debated the overall scores we were awarding to each house. I tried to keep it as fun as possible, and Krispy Kremes were purchased at frequent intervals, but Stress sat on my shoulders throughout, the stress of having to navigate unknown streets on a tight timescale, the stress of having to find us a suitable new home that we could move to before term started in September. When our purchase fell through, it looked as if we were going to have to put our belongings into storage and move in with my parents – thankfully my buyer decided to delay Completion by a month, and we were able to find a new home in that time. The major sticking point throughout was the third bedroom issue; the poor design of most postwar UK homes leads to 2 decent size bedrooms and one tiny boxroom – perhaps navigable with small children, but an impossible situation with teenagers, neither of whom was willing to accept such a small bedroom. In the worst cases it was hard to see how a full-sized single bed would even fit – the estate agent described one such room as a “cot” room, while I pointed out that I’d have to cut Lily’s legs off to have any chance of her fitting into it.

During the same timescale, I’ve also been navigating an EHCP application for Lily to try and set up the support she needs for college, and her PIP application, plus trying to support her through the GCSEs she steadfastly refused to study for. We had to tour the schools in the new town, then apply and appeal for a place for Ivy – an appeal which the panel refused to hear due to a technicality, even though they knew we’d driven 150 miles specifically for it, and would now have to immediately drive back again. We trialled a reduction in Lily’s epilepsy medication, only to discover that sadly, she’s not grown out of the condition and still required the full dose (thankfully she only experienced minor “absence” seizures in this time, rather than a full blown tonic-clonic seizure.) It’s been a ridiculously stressful time. I’m hoping that Autumn will be a time of settling, of being able to take time to set up our new home while we all adjust to our new life. Hoping that we can brush off some of the stress, like dust, as we settle into our new life, new town, new way of life.

Transformation

I’m ashamed to say that this was the landing not so long ago. A plastic crate of toiletries that landed here soon after the move, a chandelier that came with us from The House in the Sky but which needs an electrician to install, a bag of Christmas gifts that hadn’t found a home, a soft toy that Ivy was throwing out, a bag of old toy cars that Lily had finally agreed to get rid of, and several large samples of wallpaper purloined from B&Q for future use. A mess, in other words – but a mess that I had gotten so used to that I’d stopped actually seeing it. Is it just an ADHD thing? My mind is very capable of cataloguing clutter and then completely ignoring it, as if it weren’t there at all, particularly if the items are destined for elsewhere like the tip or charity shop. It’s only when something else intrudes into the domestic chaos, like knowing a visitor is about to descend, or -god forbid- deciding to put the house on the market, that suddenly the mess reveals itself through fresh eyes.

Panic.

The timescale of getting the house onto the market and selling it was pretty tight. Having only made my mind up in early March, it was clear that the house would have to be sold before June in order to complete all the legalities and move in to our new home before the September term started and Ivy begins her GCSE courses. Of course, we couldn’t move out before mid-June either, as Lily would be taking her GCSEs. The house would have to be on the market by early April to stand any chance of making the deadline.

More Panic.

Truth be told, every corner of the house contained a scene like the one above. We were still adjusting to living in a house less than half the size of our previous home, a house bought on the understanding that the kids would only be spending half of the week here, with half of their possessions stored at Simon’s place. Home-making had fallen victim to a court case in the first year here, to stress and mental health challenges, to Lily’s increasingly worrying behaviour and Ivy’s depression and anxiety. At times, I would beat myself up for not having managed to create the lovely home that I wanted, for failing to give my children the home they deserved. And yet, it was all too easy to forget the progress that I’d already made, despite the obstacles in my way. When we moved in, every single room was piled high with packing boxes. I joked with the kids that we’d be renaming the place Box Cottage. The washing machine didn’t fit under the counter and sat in the middle of the kitchen, boxes piled on top of it. A wardrobe wouldn’t fit up the narrow stairs and had to be abandoned in the garden, where it stood slowly rotting. We didn’t have a sofa, or beds, or wardrobes or any storage at all. Oh, and I had clearly underestimated the amount of space that the piano would take up in the living room, or wildly overestimated how big the living room actually was.

Panic Overload.

Single-handedly I chiselled out enough counter-top to fit the washing machine beneath, planned and built large IKEA wardrobes, found a secondhand sofa in a charity shop that would fit our tiny living room. The piles of boxes were gradually unpacked, even though some of them sat untouched for a full year before I was ready for them. A log-burner was paid for by instalments and fitted that first Summer, paying me back in the next Winter when the boiler broke and we had no heating. A ridiculous amount of flat-pack furniture was hauled up the stairs and assembled, our existing furniture heaved into different rooms. A new home was found for the piano with a local family. Pictures were hung on walls. A garden began to take shape, a log store was built from pallets. A rudimentary cabinet was built for a gap in the kitchen, shelves and hooks put up where needed, power tools and DIY gear beginning to overflow from the box I was keeping them in. If I stopped and assessed the situation, I had made so much progress from how things were when we moved in. Overwhelmed by how much still needed to be done, it was all too easy to forget how far I’d already come.

So much needed doing before the house could go on the market – the shower needed replacing, the back porch needed a leak fixing and a new ceiling, the render on the front extension needed some patches filling and repainting, the hall needed decorating, the broken decking out in the garden needed fixing or demolishing… not to mention the vast amount of decluttering, tidying and general prettifying that was desperately required. Nothing focuses the mind quite like a deadline though, and so suddenly workmen were hired to do the jobs that had been lurking for ages, while I scrambled to tackle the rest; trips to the tip, painting, tidying, cleaning, painting some more, weeding and strimming, buying light fittings and plants, taking bag after bag of donations to the charity shop or listing things on eBay. A month of sheer hard work and the house has been transformed.

Part of me couldn’t quite believe how capable I was proving to be, having only just turned the corner from severe depression. There was just no other option than to crack on with it, so that’s what I was doing – while also handling simultaneous EHCP and PIP applications for Lily. The other part of me couldn’t believe how much of a transformation was possible in such a short space of time. The house has begun to look and feel completely different. For the first time since we’d moved in, it feels like our home, comforting and sweet. Yes it’s small, but it does the job. We have all begun to appreciate it in a new way, enjoying the calmer, nicer atmosphere. Even the smallness feels cosy rather than cramped, with an awareness that living in such proximity has brought us closer. But it wasn’t just the house that has transformed. Many people have pointed out the link between our external spaces and our state of minds; a cluttered house is a sign of a cluttered mind. The hard work I’ve been putting in is rebuilding my confidence and strength; I’m proving to myself that I was capable, despite the lingering voice of abuse telling me that I’m useless, a failure. Decluttering is bringing a fresh clarity to my mind. Even just having made the decision to move has brought with it a newfound sense of hope and purpose rather than the fear and stagnation that I was stuck in. Can’t has become Can. And while it’s terrifying to leap into the unknown, leaving the lives we’ve created here behind in order to start over, I’ve already proven the basic fact to myself; I can do this.

Moving on

Struggling, falling, crashing and breaking. Gluing the pieces of our fractured lives back together and carrying on somehow. Crawling back to the starting line, trying to rise, then inevitably getting knocked back down again. Each time thinking I’ve found my feet, can begin to build things up, only to be hit with another setback that brings everything crashing down again. This has been the debilitating pattern of the past five years, each fresh round feeling harder, bringing me down further. The last few months have seen another mental health crisis, the worst yet, this time brought on by struggling to deal with events at school. The Head of Pastoral lied on Lily’s school record in order to cover up his own failings, in a way that makes me look like the world’s scummiest mother – but the school insisted that they weren’t going to change it. Despite having to fight so hard for my children over the past five years, having struggled (and largely failed) to get the school to provide both the academic and pastoral support they both need, school are essentially saying “We think you’re scum.” The last straw, anyone?

Knowing that this teacher is deliberately lying and misrepresenting our conversation took me back emotionally to having to fight Simon’s lies and accusations in court, the ongoing struggle to clear my name, to have someone, anyone, actually look at the evidence and believe me. In these situations you’re not only left fighting the abuse, or the failings of the school in this case, you’re then left fighting the ensuing lies about the situation. It re-triggered the PTSD that I thought I was largely getting over; back to severe depression, anxiety attacks, insomnia, daily life slipping through my fingers as I was left unable to catch onto the threads that hold us together.

Of course, it’s not just dealing with school that’s brought this on. It’s the ongoing battle to heal the PTSD caused by Simon’s abuse. The daily 24/7 difficulties of having a teenager with autism, ADHD, epilepsy and gender issues. The realisation that likely myself and my younger daughter are also on the spectrum, struggling day to day in our own way. The relentless battle of being a single mother, coping alone with the responsibilities. The same reluctant mantra playing through my head: It’s just too much.

My GP urged me to challenge the school, make a formal complaint, but I simply didn’t have the energy – my own survival was of more importance. Nor do I have any faith in the school’s ability to respond with objectivity. As I fought to recover, the realisation grew that I’m just too tired. Life here is too hard – trying to heal from trauma, cope with illness after illness, handle two incredibly challenging teenagers while struggling on with the daily demands, no support, no back up plan. When I get sick, whether that’s my physical or mental health, it all falls apart. And realistically, there’s nothing I can do to change it – we can’t afford to move house here unless it’s to a worse area, even further from school. Unless, that is, I opt for something more radical; shifting us over 150 miles North, to be nearer family, in hopefully a better house (heck, I’m just hoping for a parking space somewhere near my front door!), a school for Ivy within walking distance – or at least closer than 11 miles away, and the chance for Lily to attend a specialist music course. I’ve ummed and ahhed and agonised, but ultimately it seems the best option; the fresh start I was planning when we moved from The House in the Sky over two years ago, but never got the chance to have. For several weeks I found myself saying “I think it’s for the best, but I can’t quite decide…” before realising that the decision had already been made, deep down, and just need to be spoken out loud.

We’re going to move.