Dodging the email bullet.

It’s telling that while there was no contact from Simon during the past year and a half while we still lived locally, things shifted as soon as we moved away. Evidently he couldn’t bear the thought of losing control over us. Suddenly the child maintenance wasn’t being paid in full, and the lies to the CMS started – the outrageous claim that he still retained equal shared care of Lily, despite not having her overnight for over two years. Then a letter arrived at my parents’ house – well no, given this was Simon, he sent it recorded delivery, meaning Dad had to take a bus to collect it from the depot, not knowing what it was. It’s infuriating to have him send an ordinary letter in this way, it sends the message you can’t be trusted so I’m having to use recorded delivery. This is what he did to me when he was bothering to write to Ivy, and it caused so many problems with letters not being delivered and me then having to go and collect them. This time around he included a very curt note to my parents and asked them to forward the enclosed letter to Ivy. We were there at the weekend, so Mum was able to pass the letter directly to Ivy, who glanced at it and tossed it to me.

Ivy has found it difficult to receive letters from Simon, as his tone is one of pretending that nothing has happened, he’s never done anything wrong and he can’t quite believe that she’s treating him like this. Or there’ll be an invitation to do something with him and Astrid, which she finds deeply upsetting; “why would he think I’d want to do that?He was sending a letter every couple of weeks while we were still at court, but this stopped almost immediately once court was over. It was a relief as I didn’t dare to withhold the letters from Ivy, but she would inevitably be upset and hurt, ruining the progress we’d made on rebuilding her mental health. This fresh letter had almost no content, just that Simon had heard that Ivy was finding the move hard, and asking her to contact him. Why, Simon? So you can build a fresh case against me? We know by now not to trust anything he says or does, so this is not merely down to fatherly concern.

Mum sent Simon a brief response – she initially asked me to draft it, but this got nowhere. The end result was a mess; both the letter and my emotions. I just could not do it.

Out of the blue I received an email from him a couple of days later, the first contact in almost two years. To say that I felt sick as it flashed up on my phone would be the understatement of the year.

His tone to me is that of a Headteacher dealing with an unruly student, or the CEO of a company dealing with a recalcitrant supplier. Curt, arrogant and jaw-breakingly patronising. He says he’s at a loss as to how to address the situation, he can’t understand why I would move, and that it’s made it very difficult for him to retain contact with the children, particularly Ivy, so what do I suggest?

My immediate reaction? What contact? He sees Lily on average for two hours a month, max. He hardly ever phones or texts her. He has sent Ivy maybe 3 letters/cards in the last year. If there had been any meaningful contact between Simon and the children, I couldn’t have considered moving. Yet Lily has already told the new family support worker that she only really sees her Dad to get him to buy things for her. The previous support worker noted that Lily was just as interested -if not more interested- in the food on offer at their monthly brunches at a local restaurant as she was in seeing her father. And as Lily was desperate to move here, even knowing it would make it harder to see her father, the not-quite-2-hours-a-month were not enough of a factor to prevent us from moving.

It would be all too easy to dash off an angry response, telling Simon exactly what I think of him, and while I’m at it, blast both barrels at him for the twisted games he’s been playing over the maintenance and lying to the CMS. Experience has taught me that there’s no point. Neither is there any point in trying to engage in any kind of meaningful, thoughtful communication with him. All I will get is denial and gaslighting, him accusing me of everything under the sun, telling me black is white and up is down. You can’t reason with someone determined to be unreasonable.

My mood plummeted as soon as I read it. I can’t bear this. I can’t bear the thought of being plunged back into the upsetting, confusing craziness that contact with Simon entails. I can’t bear to receive more insulting, patronising emails in which Simon insists that the opposite of the truth is the real version of events. No doubt it’s somehow my fault that he’s not been paying maintenance, my fault that he’s had to lie to the CMS. I wish I was kidding, but that’s how his mind actually works – it will be my fault that he’s having to lie to the CMS, just as it was my fault that he threw Lily out. He doesn’t want to do these things, but he has no choice because of what I am doing. Of course, what I’m being accused of is usually a pointer towards exactly what he’s getting up to. He sends letters by recorded delivery, insinuating that I can’t be trusted to hand them over to Ivy, because he knows that he would withhold them from her if the situation were reversed.

I haven’t yet healed my mind from the insanity of the abuse, and I’m not willing or ready to go back there. More; I’m determined not to hand over any of my hard-won power back to him. It’s time to remember my own rules – never reply immediately. Take time to think my response through. The thought of losing my power – or my sanity – is terrifying. This time around, I’m determined not to let it happen again.

My To Do list; get an EHCP, defeat the Tories

Monday morning, the first day back after half term. Ivy has been dropped off at school, complaining bitterly the whole time about how she doesn’t want to be there and hates everyone. Lily has astounded me by getting up on time, ready for our regular coffee date, where we head to the supermarket for breakfast and she helps me put a menu plan together and do the weekly shop as well as talking about the week ahead. I could live without the expense of taking Lily to breakfast every Monday, but it’s all part of a strategy to teach her about planning, the art of the To Do list and independent living skills. My current To Do list may as well open with Climb Everest given how overwhelming it’s looking.

  • Get an EHCP for Lily
  • Chase up a CAMHS referral and somehow obtain ADHD meds for Lily, without a six month waiting list, 12 weekly consultations and no actual progress.
  • Get a CAMHS referral for Ivy, as her previous therapist hasn’t made good on her promise to do it
  • Find a new college place for Lily
  • Chase up local services, Youth Support Team etc for help for Lily
  • Find a new NHS dentist
  • Sort out online prescription access for Lily’s epilepsy meds
  • Pay the interim utilities bill and call the previous company for a refund on the direct debit that shouldn’t have gone out
  • Contact CMS and find out what decision they’ve made out the reconsideration
  • Sort out how Lily can continue to receive her Decapeptyl shots locally, which might mean moving her to a different doctor.
  • Finish the writing commission I’ve got
  • Plan, order and then ultimately build a wardrobe for my room.
  • Fix the outhouse roof before it collapses
  • Fix Ivy’s door so she doesn’t get trapped in her room
  • Seriously. Something miraculous needs to happen in the kitchen/diner. We can’t go on like this.

This is all on top of the regular day-to-day To Do’s, the shopping, cooking, washing up, laundry, cleaning, kitty-litter-emptying kind of task. Frankly, even the first item has me wanting to crawl back under the duvet and give up on the day. Get an EHCP for Lily. You would think, given that she has diagnoses of autism, ADHD and epilepsy, that support would be automatic, that it would be a clear case of this kid obviously has special needs, let’s make sure she has the support she requires to finish her education and be helped towards independent living. But no, like every other family in the land, what then follows is battle after battle to have your child’s diagnosed condition recognised by the Local Educational Authority -or even by their school – and the necessary funding put in place to pay for the extra support they need. As schools have to demonstrate that they have literally spent thousands (£6000, I think) on support for your child before applying for an EHCP, what tends to happen is they refuse to recognise your child’s SEN, particularly with autism, and instead blame it on poor behavioural choices. Your child is now not autistic, they’re just naughty, probably because you’re a bad parent. Would you like to go on a parenting course? Actually no, Karen, I want you to apply for a fucking EHCP for my autistic child, like you should have done years ago.

It got so bad with Lily’s primary school that the Head wouldn’t even use the phrase Special Educational Needs, but would talk about Lily’s Additional Needs, despite her autism diagnosis. We would literally sit there correcting each other, me using terms like SEN, or even disability, and her changing that to Additional Need. Because if she used the phrase SEN, she would have to divert more funding to supporting Lily, and ultimately go down the route towards an EHCP. Having now received the paperwork from secondary school including Lily’s full pastoral record, it’s clear that she wasn’t coping at school and school weren’t coping with her. However, I was only contacted if she was disruptive in class. If she was staring out of the window for the entire lesson, not paying attention, not making notes, not learning… it didn’t matter. Sadly, for the entire time that Lily was at high school, I was fighting a toxic divorce, being dragged through court etc etc. There wasn’t enough of me left over to be fighting for Lily’s education at the same time – naively I trusted that the school would do the right thing for Lily, and by the time I realised that they weren’t, it was too late. When we were given a family support worker – which in retrospect was only offered because school were insisting that I was a bad mother – she made it her mission to obtain an EHCP for Lily. Even she was shocked by the school’s response – the SENCO laughed at her and told her not to bother, and she had a lot of difficulty obtaining the figures and paperwork that she needed. For the first time I could see the actual figures; while school insisted that Lily had plenty of support, this turned out to be one TA shared with 18 other students in the class. The school had failed to provide even the bare minimum of support that Lily needed, but then blamed and punished her (and me) when she then failed to cope.

Yesterday’s post at Trees of Sanctuary hit me hard, another friend struggling to get the support her child needs – but at what cost? The price we pay in terms of our own health and stress, the impact on family life that constant struggle brings, the frustration of finding yet another professional has let us down, has lied (this happens more often than you’d think,) has failed to do what they promised… it seems that the State wants us to give up and quietly walk away, handle things on our own, accept that our autistic kids will spend the rest of their lives holed up in their bedrooms, playing computer games – because that’s the default life position when they don’t get support. Lily’s support amounts to meetings in which she’s told she must try harder, do better, manage her behaviour. If Lily gets the support she needs, she has the potential to be a music composer and/or producer, making a decent amount of money and therefore able to hire someone (or use additional benefits to do so) to help her manage the life tasks she would otherwise struggle with. Without support, she will be unemployable, living in her bedroom, dependent on myself and then Ivy, affecting our ability to work too. That’s the future we’re fighting so desperately to prevent – all we’re asking is that our children be given the chance to succeed through getting the right support now – yet around me, I see so many families who have given up, or who never even started the fight, who have teenage or adult autistic kids that spend their lives on the computer in their bedroom. It all boils down to money, the lack of government spending- but the stupid thing is that so much money is wasted on tribunals and the like, or support workers whose job isn’t to provide real support, rather than spending on meaningful help. Support for autism has not been one of the major topics as the UK approaches a General Election this week, it’s not something I’ve heard mentioned at all. No doubt Boris Johnson would wave it around as a pre-election pledge if he thought it would win him more votes (remember David Cameron’s promise of a “disability passport of rights” to ensure all SEN kids received the necessary help?) – but after 9 years of cuts to vital services I’m amazed that anyone would still listen to a word that the Tories say. More money for the NHS? For education? They’ve had 9 years to do that, and have failed to do so, preferring to slash budgets to the most needy. If you vote Tory, you’re pushing our children under the bus.

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.

The Accidental Runner

I’ve taken up running, entirely by accident. I’m not even sure how it happened. One minute I was a fervent anti-runner, would never have put the words fun and run in the same sentence… then quietly over Christmas, my body started whispering that maybe she might quite like to start running, much in the same way that she’d whispered earlier last year that she thought she’d really rather enjoy swimming. The swimming has been going -ahem- swimmingly, my face spontaneously breaking out into a grin when I enter the water and begin my old-lady-breaststroke 15 lap minimum. But running? Surely not. Running involved getting hot, sweaty, red-faced and out of breath, putting undue pressure on feet that had only just recovered from plantar fasciitis, and being seen in public wearing dodgy Lycra outfits. Yet my body remained quietly insistent that yes, running was what was required, and I know by now that it’s generally worth paying attention to what my body says she wants. It’s only taken me 46 years to understand this.

Apart from a brief spell of jogging in my teens, which was as much about wanting to get as close to Nature as I could in urban Liverpool as it was about actual exercise, I’ve never been running. Plus this time around it was Christmas, I was at my parents’ home in Liverpool without so much as a T-shirt or pair of trainers and with a large pile of chocolate to work my way through. As actual running was clearly not an option, I did the next best thing – reading about it. Firstly Anna McNuff’s The Pants of Perspective, an account of her solo run through New Zealand- literally all of New Zealand, from South to North. Crazy Lady. While impressive and inspiring in its own way – and kinda funny in that McNuff clearly isn’t a planner and the trip was alarmingly and refreshingly ad hoc rather than having been thrashed out in military detail beforehand – it didn’t have much relevance for a couch potato like me who’s not in the habit of tackling a mere 40k before breakfast. Bring on Bryony Gordon’s Eat, Drink, Run. Overweight and struggling with severe mental health issues, Gordon found herself running as a way of dealing with her depression… then, in her role as a journalist and mental health advocate, ended up chatting over-enthusiastically to several members of the Royal Family, and accidentally putting herself forward to run the London Marathon. Which meant that she really did have to take up running. Much more relatable. Not that McNuff’s book wasn’t enjoyable, just that it’s far easier for me to relate to someone who is completely unfit and falling apart and then takes up running by accident.

A Proper Running Shop was required to buy myself a decent pair of running shoes, realising that my “good” trainers were over twenty years old. The very nice man had me running on a treadmill to check my gait and found shoes with as much support as possible, given my previous injuries. Testing several pairs out in this way showed me that there really is a difference; with some of the shoes I felt flat-footed and landed heavily, while others felt much lighter and bouncy. Although blimey, they don’t come cheap. Terrified that I’d wasted a ridiculous amount of money on trainers that I’d never wear again, I signed myself up to the aptly named NHS Couch to 5k app, and the Red January programme run in association with Mind, the mental health charity, with the aim of exercising every day in January. Then on the 2nd January, I crept out into the grey light of dawn and with Sarah Millican’s reassuring voice in my ears, began my first run along the nearby cycle track. Or rather, my first walk. Week One had me walking for 90 seconds, running for 60 for repeated intervals. My Aldi fitness leggings began sliding down with every step, leaving me clutching the waistband so as not to get arrested for public decency offences. My other hand juggled my phone and water bottle. It was freezing out and I was nervous that I wouldn’t even manage Day One as I was so out of condition. But I made it, with an imaginary orchestra playing a triumphant Thus Spake Zarathustra behind me as the final seconds counted down (that one from 2001, A Space Odyssey.)

I’ve just completed Week 3 of the Couch to 5k app, now up to running three minutes at a time. My body is loving it, craving it even. Don’t get me wrong, I’m a rubbish runner, just as I’m a rubbish swimmer; I have no intention of entering any kind of 5k race or timing my personal bests. I’m just doing this for me. What I’ve realised is, it doesn’t matter whether or not I’m any good at it. Doing it anyway is what counts.

Fire-fighting and the Magic Button

“I’d like this year to have less fire-fighting,” I tell my counsellor. “I want things to be a bit calmer.”

She looks at me. “Is that realistic, given Lily’s difficulties?”

The impact of her words hits my chest like a punch. As ridiculous as it might seem to an outsider, I hadn’t actually considered that. I’d merely assumed that I was doing something wrong and that the stresses and emotional turmoil we endured over the last year could hopefully begin to fade away if I just tried harder, worked on myself, operated from a place of stronger mental health. Maybe meditating, drinking green smoothies, reading the right book; somehow there had to be a way of finding normality, of making everything okay. The Magic Button, in other words.

When you have a child with difficulties such as autism and ADHD, people look to you for the Magic Button. Teachers, grandparents, even going way back to kindergarten and crèche workers will all at some point sit you down and inform you that your child isn’t responding to them the way he/she should be, and is misbehaving (“making poor choices” in modern day teacher-speak) and so could you please give them the Magic Button? You know, the one key phrase or action that means your child will suddenly switch off their challenging behaviour and behave perfectly for them.

Over and over you explain that there’s no quick fix, no instant solution, no Magic Button. That you really have nothing to offer other than the general advice to try and keep a sense of humour, patience, very clear instructions etc, and that some days none of it will work. That Lily is genuinely not capable of holding it together 100% of the time, that 80% is pretty good and she just can’t manage that final 20%. They won’t accept that though. If she’s capable of “making the right choices” 80% of the time, surely she can do this 100% of the time? She just needs to make better choices, that’s all. So if you can give them the Magic Button, they can get her to 100%, tick all the boxes and go home happy.

“There is no Magic Button,” you find yourself explaining yet again. My God, you wish there was.

I hadn’t realised that I’d got into that same mindset myself. Expecting myself, or an as yet unknown professional to suddenly come up with the Magic Button that would “fix” Lily’s behaviour. If I found the right supplement, or therapist, or managed to explain things to her in the right way, it would all click into place and life would begin to flow more smoothly. It’s very hard to accept that this isn’t an option. Weirdly, it’s hard to accept that maybe I’m not actually doing anything wrong.

Of course, it’s impossible to tell how capable Lily really is. It seems that she can be intelligent and relatively capable when she wants to be, but demand avoidance and Oppositional Defiance Disorder combined with ADHD mean that it’s virtually impossible to motivate her when she’s not interested. Given that she still refuses to do any studying, despite her GCSEs rapidly approaching this year, it’s evident that her grades could be improved if she put even a tiny amount of effort in. But she won’t. And there’s the issue – do I accept that refusal as part of her condition, or do I continually fight against it? Similarly, should she accept that part of her make-up that leads her into stubborn refusals and defiance, or should she work to change it? Can it be changed, or even improved a little? I don’t have any answers, see-sawing between feeling sure that Lily needs pushing to do better, or wondering whether in fact she’s more disabled than anyone gives her credit for.

“It’s like trying to push a double decker bus up a hill,” I explained to the counsellor, describing how it felt to battle to support Lily every day. “Exhausting, demoralising and you can’t make any progress upwards, all you’re doing most of the time is trying to stop her from sliding back down the hill into the swamp.” The swamp – my fear for Lily, borne out by too many of the ASD/ADHD families we’ve met – of a child/teenager/adult who never comes out of their bedroom and spends their entire life playing computer games, rather than existing out in the real world in any meaningful way. So what? some people might say, the kind of just let them do what they want and keep them happy philosophy that I’ve learned doesn’t work with Lily. A life spent playing computer games in the bedroom is a life only half-lived – and when you know your child has more to offer than that, it’s heartbreaking to see their gifts go to waste. Lily could achieve a lot with her music, if she could manage to stay on track and put some effort in, particularly if this was backed up with the right educational support. And there goes the next major issue, the total lack of provision for autistic kids, which warrants an entire post in itself. Every single day brings the same battles over the basics; getting up on time, cleaning teeth, studying, bathing, chores, homework, getting off the computer, bedtime… “What happens if you just don’t?” one mother asked me. Then she won’t do them. She simply doesn’t get out of bed, misses school, smells bad and the mouldy dishes pile up in her bedroom while she builds her Minecraft empire late into the night. There’s choosing your battles and there’s what if all of it’s a battle? Because if you ease off, even a fraction, the bus starts to roll downhill, likely flattening you in the process. And then there’s the phone calls from school…

That week, the same quote keeps appearing in different guises. You can’t calm the storm, you can only calm yourself. You can’t stop the waves, but you can learn to ride them. A sense of acceptance is beginning to form, the tiniest seed of realisation that needs to be nurtured; I need to detach. I can’t stop the storm, but I don’t need to hurl myself into the raging waters. If life is never going to be smooth or easy – if the firefighting is going to be endless – then I need to take a step back and find my anchors, develop the self care practices that are going to keep me calmer and help me cope better. I’m never going to be able to stop the stress from arriving, but perhaps I can try to create the space in my life to help me deal with it. A combination of detaching emotionally so that I’m not getting hurt on a personal level by whatever’s happening, while also vastly improving my own self care and support systems so as to be able to stand stronger and not crumble each time the storm hits. The image I have is of being able to watch the storm through a window, rather than battling to survive the elements in a tiny boat as I’m battered by wave after angry wave. That’s the idea, yet turning it into a reality remains an unknown quantity. Still, it feels that I’m sitting with the right questions at least, even if I don’t yet have the answers, nor the Magic Button. Perhaps the Magic Button was always the individual’s coping mechanisms, and not about the SEN child at all.

The trouble with CYPS

Another CYPS appointment; drive over 11 miles to school to collect Lily, drive 11 miles straight back to the clinic where the session is held. Sit in a waiting room where Heart FM is playing at full blast, in case Sarah, the therapist decides to involve me in the session. The chairs are ridiculously uncomfortable, the inane shouty DJ is giving me a headache and there’s nowhere to get a cup of tea. I wait for half an hour, trying to use the time to answer emails, before I’m summoned into the room. Sarah begins telling me about how she’s been learning about Lily’s interests and would I like to hear about what she’s been doing on the computer? I bite my tongue before I can point out that I live with Lily, that the computer is in the living room and therefore I get to see and hear what Lily is doing on the computer. Every. Single. Day.

Sarah tells me what Lily has been doing on the computer and asks me for my reaction. Lily’s computer use is highly problematic for us as a family; she becomes obsessive and addictive while on it, and entirely disregards all of the rules and agreements that we’ve made about it, namely that she needs to have done her homework, revision and any outstanding chores before using the computer. Time and again I’ve had to drag myself out of bed to tell her to get off the computer and go to bed, even after midnight. While gaming online, she yells, screams and swears at the top of her voice no matter how many times I intervene and tell her not to. If I try to turn the computer off, she physically fights me to stop me – the only thing I can do is then confiscate the entire thing when she’s at school. Rather than do what it takes to get the computer back – chores and homework (and by chores I literally mean one small task per day) – she then resorts to aggression or emotional blackmail such as threatening to kill herself if she doesn’t get it back. She switches it on as soon as she gets back from school, or first thing in the morning if there’s no school, and will remain on it all day and late into the night. If Ivy needs to use the computer for homework, there will be yet another fight. Lily will promise anything to get the computer/internet back when it’s in Time Out, but will never stick to those agreements. She has posted videos on YouTube in which she’s ranting, swearing and being aggressive, and refuses to take them down, has posted one in which she was improvising a flamethrower in Simon’s kitchen, and I narrowly managed to prevent her posting a video in which she cried hysterically while claiming she’d been diagnosed as a psychopath. She simply has no concept of the damage that she could cause for herself or others, that dodgy online stuff has a nasty habit of reappearing in the future, and so I’ve banned her from “vlogging” – yet another rule that she entirely disregards.

Sarah is aware that I’m broken, exhausted and struggling. She’s aware that computer use is a contentious issue. Yet she seems displeased when I respond through gritted teeth that while it’s great that Lily has for example made some music on the computer, she shouldn’t be playing on it unless she’s done her homework and her chores. She sends Lily out of the room and essentially tells me off, albeit couched in friendly therapist speak, for not managing to be enthusiastic about Lily’s computer use. That I’m too critical, I’m not affectionate enough, that she has a duty of care towards Lily and needs to ensure Lily is not subjected to emotional harm. Really? I think, Where the hell where you when Simon was subjecting the three of us to severe emotional and psychological abuse? How come all the evidence I’ve gathered, including the audio recording that Lily made of him being hugely abusive and attempting to alienate them from me has been entirely ignored by the authorities? Seriously, you’re going to insinuate that I’m being emotionally abusive because I can’t fake a happy face about Lily breaking the computer rules on a daily basis? Sarah goes on to point out that last week’s session was about addressing my needs and we’re now getting support from Early Help. Um – do you mean the session where I was kept waiting for over half an hour, feeling worthless because I’m evidently not important enough for anyone to speak to, and triggered because that’s the kind of thing Simon used to do? Also no – I’ve had a referral to Early Help. I’ve not had any actual help yet. So basically, nothing has changed since we first walked in to the clinic a month ago, yet Sarah is acting as if I’ve now had all the support in the world and the issue is that I’m just not patient and positive enough around Lily. Sarah also appears to have forgotten that she brokered a deal with Lily about her computer use during the last session, one which Lily has entirely disregarded; evidently Sarah is not going to hold Lily accountable for this, but rather is reinforcing Lily’s poor behavioural choices, making me look like the Bad Guy for insisting that Lily follows the rules.

Lily was referred by the pastoral team at her school as an emergency case. At the time she’d punched other kids at school, was acting aggressively and threatening members of staff, and was disruptive in class, claiming she could see people who weren’t there, or demons climbing up the walls. She had been self harming, and her behaviour was becoming more and more bizarre as she imitated characters from her favourite anime, literally living out her day as a fictional character. Also – and the part which seems to be continually overlooked – she had threatened me, firstly with a heavy stone pestle and then with the kitchen knife. What I find most disturbing – as well as the knife incident – is that she was deliberately faking having psychotic episodes. She didn’t really see people or demons, she was acting out. The self harm was carefully controlled, scratching rather than cutting, and displayed to others at school. In addition, the only time she ever shows me affection is when she wants something. Every time. If she starts cuddling up to me, I can feel myself getting tense because I know she’s about to demand something from me. Sarah was emphasising that Lily was a child with diagnoses, but then again she had Lily down as being 14. Lily will be 16 in three months. If she continues punching people and being aggressive, she’ll get arrested. If she continues acting out like a crazy person, she’ll be sectioned. It doesn’t matter to the police that she’s deeply immature or autistic, if she’s behaving like a menace to the public then they’ll take action against her – and as she will continue to be aggressive towards the arresting officer, the situation will spiral out of control. I suppose I’m lucky that we don’t have guns. In America, Lily would have been singled out as a potential school shooter. I’m not trying to make some kind of sick joke – she would literally be on the “concern” list, invited in for regular chats with the school counsellor as her behaviour has been so extreme.

If Lily was my partner, people would be urging me to leave her; the pathological lying, the aggression, the total lack of regard for other people. But she’s my child, therefore I’m expected to not even complain. The reality is that I need respite, it’s a lot easier to manage her behaviour if I’ve been able to take a break from caring for her 24/7. When you’re having to fight the same battles day in day out – over issues as simple as Lily cleaning her teeth, or taking a bath, never mind homework and computer use, it becomes exhausting and demoralising. When you’re dealing with aggression day in day out, it wears you down and erodes your self confidence. If I got a job at a specialist school for autistic children, I’d be given training and support. As a parent it’s a case of just getting on with it – or the offer of yet another parenting course in which you’re told to be positive and enthusiastic, or even to just give the kid exactly what they want to keep them quiet. Broke the computer again? Oh well, let’s buy you another one. I wish I was joking, but that’s what the advice on Challenging Behaviour workshops boils down to. Nobody ever works one-to-one with your child on a sustainable therapeutic basis; instead the onus is always put back on the parent; untrained, exhausted and demoralised, to somehow wave a magic wand and make it all better.

We should have had a referral to CYPS about seven years ago. It should have been automatic when Lily was referred to the Tavistock with gender dysphoria, but we were knocked back. We’ve had one six week block of art therapy for her about five years ago when the service was still CAMHS and Lily was newly diagnosed with ADHD, but several rebuttals since then. I’m aware that children’s services are woefully overstretched and underfunded, but I refuse to say that we’re “lucky” to have had the limited support that we’ve had. It’s a disgrace. Even before she’d met Lily, Sarah was hinting that perhaps talking therapy might not be appropriate and seeming very much like she wanted to take us off her case list before she’d even started, the easiest way of clearing out the waiting list. The trouble is there is nothing else. If CYPS don’t help us, it’s the end of the road, unless I pay for private therapy. Yet it’s clear that at the moment, I need therapy myself – if I go under, both of the kids go under, and I can’t pay for all of us at once. We might only get 8 sessions with CYPS, and Sarah is going to be moving away halfway through those, leaving Lily with someone else – my next fear is that we’ll get no further than essentially having two rounds of getting to know you sessions with two different therapists, and no actual progress will be made. In the meantime I’ve now had four occasions of leaving the CYPS clinic feeling utterly demoralised to the point of suicide. I’ve had to sit on a park bench, sobbing in public until I could calm down enough to drive us home, knowing that if I had a knife in my bag I’d be using it on my wrists. Each time, I’m left fighting to survive, building myself back up before trying to repair the additional damage that has been done to the relationship between Lily and me.

A recent documentary showed how nationwide CYPS is underfunded and overstretched, and that children and young people are repeatedly being turned away while their problems grow worse. As a parent it’s heartbreaking and terrifying to watch your child’s condition worsen week by week while not being able to get them the help they need – unless of course you can afford to pay for private treatment. Frustration and anger build as GPs refuse to even attempt to refer you to further services. Again and again you’re told that there’s nothing they can do, or that your child’s problems aren’t serious enough, while you watch your child slipping further down, further away, losing them a bit more each day. Your stress and anxiety build, until it reaches the point where you need help too, and your own ability to cope and support them diminishes. And because the “support,” if and when it arrives, has been so hard-won, you close your eyes and pretend that it’s fine, it’s making a difference, even when it’s not. You don’t dare complain for fear of losing everything. I’ve met countless families where this is the nightmare reality. Our kids are stressed and sick and left to get on with it. Our autistic kids are entirely ignored and unsupported. Meanwhile no one is taxing the rich or the corporations and the luxury goods market is at an all time high. A local aristocrat featured in a documentary about the wealth divide, shrugging her shoulders that “poor” people were just jealous of her lifestyle and needed to work harder (she herself had married into a titled family.) No. The system is stacked against us, social mobility becoming increasingly harder in a world of Zero Hours contracts, huge university fees, student loans, eye-wateringly expensive property prices and precious little job security, not to mention the nightmare that Universal Credit has been. But we’re not jealous of Cartier watches and polo ponies. We’re angry that our kids are being left to rot so that the rich can feel even richer.

On World Mental Health Day

Crashing, over and over. Fighting to pick myself up, keep going, trying to make things better. Getting knocked back over again, each time the fall coming harder, the pain deeper, the resilience less. A good weekend is followed by a clash with Lily’s therapist, who alarmingly manages to actually make things worse. Over the past two months, this woman has left me feeling suicidal no less than four times, steamrollering me with her procedures and rules and now forcing me into the role of Bad Cop with Lily while she gets to play the Good Fairy; not even the Good Cop. Another post for another time, but I was left curled up on my bed, sobbing, unable to function. Not able to leave the house to drive into town to pick the kids up off the school bus, not able to cook dinner, locking myself in my room because I couldn’t face dealing with the kids and I didn’t want them to see me in that state either. Literally wanting to die and feeling trapped because suicide isn’t an option when you’re a single parent. Fighting the urge to gulp down most of a bottle of whisky as the next best option. Discovering a whole new level below rock bottom, one in which suicidal is something to aim for, something better than you’re currently feeling. There is nothing of me left, I died a long time ago. This empty shell should have crumbled into dust, but is forced to keep moving so that the kids have food, clothes and a ride to school. The small voice in my head becoming a scream I can’t go on like this any more, day after day after day I can’t go on, but with no way of making it stop.

Casual plans had been put in place to head north last weekend to visit my parents and see the final outing of Royal de Luxe’s giants in Liverpool. Exhausted, I realised there was no way I could drive 150 miles on Friday evening after school, spend a hectic two days giant-watching and then drive 150 miles home again on Sunday evening. I figured we’d head up on Thursday evening, then by Wednesday night, broken, realised that it was still too much to manage. I wasn’t coping, was barely functioning. So we took Thursday off school as well, packed a bag each and set out on the journey North, having left an early message on the school’s answering machine that Ivy and Lily were both ill. In the end, we took not only the Thursday and Friday but also the Monday off school, knowing that after a full-on day watching the finale in a massive crowd, I was too tired to drive home safely (due to roadworks as the motorways are upgraded, the three hour journey takes five hours or more.) Three illicit days off school, two struggling kids, one mother who was an emotional wreck. I told school that the kids were ill, intending to use the excuse of food poisoning if questioned further, developing this into full blown Noro virus if pushed – knowing that school were unlikely to want us back until fully recovered if this were the case. Because what am I supposed to say? Sorry, I’m feeling suicidal so my kids aren’t coming in for the next few days as I need to be with my family, I don’t feel safe on my own.

To Liverpool then, for 3 days of Giant-watching. Trains, buses, huge crowds. Wishing that my Dad was more inclined to take tea-and-cake breaks, or that chairs had been provided along the route. No matter though. The spectacle was enough, the magic of a mass of people caught up in a game of make-believe. I’d seen pictures of the Diver and Little Girl from years before and wished I’d been able to see it then. This time around, I was determined that we’d catch it – and now having discovered that this is the last outing of the Giants, I’m so glad that we did. It’s yet another example of an extra-curricular activity that the kids will remember for the rest of their lives, whereas it’s unlikely they’d remember what they did in school that day. We were all captivated as the huge puppets moved, walked, and danced along the streets, while red frockcoat-wearing Lilliputians dangled from ropes, climbed alarmingly tall frameworks, pulled, hauled and best of all hurled themselves from moving trucks to make the giants move, all to the music blasting out of speakers and the cheers of the crowd.

Having worked in theatre, I’m well-versed in criticism, in development during which an idea is thrashed about and re-worked to the point where it no longer resembles itself, of too many voices demanding that the piece needs to be more this, less that, must say a different message… and yet I’ve known that often the audience doesn’t make the same demands. Or at least the audience – if it were composed of ordinary people rather than the theatre in-crowd – isn’t necessarily making the same demands as those within the industry claiming to speak on their behalf. That sometimes people want to be heard, want to see their lives reflected back to them in a way that gives them grace and dignity, and above all, hope. Most people are happy with a simple story told well rather than a piece that defies convention or experiments with form and style. With what we saw of the giants this time around, I couldn’t pick up on any notion of a story that was unfolding in front of me. It didn’t matter though. What we watched was a celebration, a spectacle. Hundreds of people had poured countless hours of effort into planning, building, rehearsing, and now performing- from the frock-coated Lilliputians tasked with operating the giant puppets, to the volunteers walking alongside them to maintain a safety cordon, to the transport workers ensuring that people could travel there and back as swiftly as possible, to the guys sweeping up the litter afterwards – all ultimately tasked with a single aim; to bring delight. I could infer any meaning I wanted about Liverpool’s Dream, from the history of migration from the city, people travelling to the New World chasing their dreams of a better life, to the tragic history of slavery and a city built on the backs of the exploited. Perhaps it sounds crass to say it didn’t matter. What mattered was bringing people together to watch it, to share in a communal experience of childlike wonder, of awe, of joy.

I imagine that there’s people I’ve worked with previously who would turn their noses up at the naivety of the whole thing, who would claim it had nothing to offer artistically, that it was mere spectacle. I think perhaps they don’t understand the meaning of the word spectacle – like watching a grand fireworks display which may not have anything to say about white working class reaction to Brexit, but which fills you with a delicious joy for the wonders of human existence. This is something we need more of, these moments of connection, of awe, of delight. Of hope, rather than yet another young woman brutally murdered in yet another crime drama, or witless reality show, or on-point, right-on stylistically innovative but depressing as fuck piece of new writing. Under Tory cuts, arts budgets have been slashed nationwide – it’s hard to justify spending on the arts when there’s no money for meals on wheels or road maintenance. Yet Royal de Luxe have been instrumental in regenerating the city of Nantes, their home base, not only culturally but economically. Liverpool is one of the few cities that insists on investing in the arts, the number of visitors last weekend proving that it makes economic sense. The Golden Age of cinema occurred alongside the Great Depression. Art Saves, as the T-shirt has it; financially, emotionally, intellectually and also spiritually. When you run out of hope, there’s nothing left to live for. I had reached that point last week. And although the weekend was tiring due to the long hours of standing, waiting and walking, it left me feeling renewed and refreshed in a way that I haven’t felt for years. The Giants ultimately brought me the gift I most needed; hope.