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.

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.

Everyday crisis

Sitting in a local cafe, waiting for Ivy to finish therapy and Lily to arrive via the school bus. An overhead light flickers on and off, making crazy strobing shadows on the floor that feel like a horror film. Nearby a mother sits with her clearly autistic son, who having downed his drink now rocks and repeatedly tells her We need to go home now, while she does her best to ignore him, tapping at her phone screen. Finally, her coffee drunk, they get up and leave. I don’t judge her for trying to block him out – I know too well the struggles of having a child on the spectrum and how it wears you down. I do my best to ignore the flickering light, to take this hour and catch up with myself after a demanding week.

Lily’s work experience week did not go well. As usual, she did what she wanted, blanking out or messing around on the tasks that bored her. This time around, my Mum was present for her final day and so Lily wasn’t able to hide behind her usual excuses . Lily still insisted that she worked hard and did her best, meanwhile the office manager apologised to Mum that she wouldn’t be able to provide Lily with a reference as she really hadn’t earned it. After being called in by the manager to check on her because Lily had pinged an elastic band into her eye and was now claiming she couldn’t see and needed to wear an eye patch, it was clear that any plans I’d sketched for the week had to be abandoned; I was on call. By the afternoon of Day 2, the manager sent Lily over to the community theatre group making props in the church hall as it was clear that she was bored and unwilling to do anything else. That had already been scheduled for Day 3 – at which point Emo Lily, with heavily black-smudged eyes and face, argued with the organiser as she wasn’t allowed to play Marilyn Manson as they worked, then took 2 hours for lunch. Day 4, the day Mum was there as a witness, Lily did sod all but roll her eyes and sigh, until the manager told her there wasn’t much point in coming back after lunch. Given the amount of effort that I, Mum and the office manager had gone to in order to set this up for her at the very last minute, it was hellishly frustrating that Lily seemingly put no effort into it. I was just glad that I hadn’t succeeded in setting up anything more challenging – or even anything local – it would be embarrassing to be sitting in this cafe had Lily spent last week messing them around.

Back home and I struggle to teach her to think about others, to take responsibility for her actions and behaviour. I try to get her to understand how disappointing it was that she hadn’t put more effort into work experience when the rest of us had tried so hard for her. Try to get Lily to tell the truth, and to stop making excuses – always the thousand and one reasons why she had to do or not do whatever it was.

I don’t care any more Lily, I just want you to behave.

Perhaps it sounds harsh, knowing that Lily is autistic. Perhaps my expectations are too high. Yet Lily is evidently bright. She can be capable when she wants to be. Most of her behaviour comes down to Pathological Demand Avoidance, needing to be in control at all times and never wrong, an Aspie aversion to transitions and change, plus ADHD-driven inertia, difficulty with both starting and completing tasks. Back in the day she’d merely have been labelled as awkward, lazy, difficult, selfish and defiant. And that’s where it’s hard – she seems capable of so much more, of making better choices, of making more effort. She can do it when she wants to. It’s impossible to know what she’s actually capable of, where the line of autism and ADHD ends and the line of bad behaviour kicks in. Some would argue that it’s all down to her various diagnoses. Others would blame poor behavioural choices. And then there’s the ones who will blame bad parenting.

Yesterday brought a workshop with the local Carers’ group, followed by a meeting with the school SENCO. At the workshop the facilitator dared to say the unsayable; that in many ways, it’s easier with a child who is lower-functioning on the spectrum. This is heresy to some; above all, it’s really not helpful to get competitive over whose child is the easiest/most difficult to manage. Everyone is fighting their own private battles and it’s not possible to weigh up whether it’s worse to have a child who wakes throughout the night, or smears poop, or constantly runs off, or screams abuse at you in the supermarket. Yet she was talking from experience, a son who was more profoundly autistic yet in many ways easier to manage than his sister, whose Aspergers brought constant conflict, tension and verbal abuse on a daily basis. These are the kids no one knows how to handle, the kids on whom no behavioural strategy will work, who can seem bright as a button one minute yet next minute are in meltdown, refusing to cooperate, flying at you in a rage or head butting the wall. Kids who seem capable of getting decent qualifications, of going on to be independent and living their own lives… then have you lying awake with the realisation that they’re not going to make it, they’re just never quite going to manage, that either they will end up getting arrested, sectioned, or spending the rest of their lives still living at home, glued to their computer and arguing about cleaning their teeth or having a shower. Or worse. There is simply no provision for them.

The SENCO meanwhile assured me that Lily was being offered plenty of support in school, but was choosing not to utilise it. That countless times she’d seen Lily ignore the teacher, blank the TA and just refuse to do the work. The same verdict at home, at school, at work experience; Lily only does what she wants to do and kicks off about the rest. It has been this way since she was born. Unusually though, the SENCO took the time to tell me that I was a good mother, even though I generally never get to feel that way. There were the usual concerns of what support are you getting? and an insistence that I need to try and limit Lily’s impact on myself and Ivy. To which the answers are None and How? When I told her that we’ve found the perfect post-16 course for Lily, but it’s in a city over 30 miles away, she insists that I should drop the idea – it will be too taxing both economically and/or physically if I end up having to drive her there, unfairly impacting on both myself and Ivy. She also admitted that Lily was an extreme case, the first time I’ve heard this from a professional. The Early Help scheme was mentioned, and again I reiterated that while I was willing to try anything, I couldn’t access it if it meant that Simon would be informed. Despite the fact that Simon has now absolved himself of any and all parental responsibility (while retaining parental rights, of course), the knowledge that I was accepting help from Social Services would be like handing him a loaded gun and he wouldn’t hesitate to use it against me. Meanwhile Lily has been telling people that she’s been told she’s a psychopath and is just waiting for confirmation.

I sit Lily down for a talk and explain that her behaviour has to improve. That she has to put more effort in. That while ADHD makes it harder to do certain things, like getting started on tasks, it just means that at times she has to force herself to do it, like it or not. That we all have to do things we don’t want to do; I certainly don’t want to get up at 6.30am to drive them both to the school bus stop. She promises she will try harder, and she does, for almost a whole day. When she asks, I tell her she’s been 100% better. Then I discover she’s lied about finishing her Maths homework, neither has she made any attempt to tidy her room. Next morning I have to tell her several times to get up. I tell her she needs to read through her science topic for a test next week; she disappears to her room and refuses to come out. She doesn’t clean her teeth; by rights she should have a mouth full of fillings by now, she’s evidently hit the genetic jackpot. She goes to school without brushing her hair or teeth yet again, and yet another teacher emails me about homework not handed in, meaning that Lily is still lying to me about it. In her room, along with a mouldy apple core, discarded food wrappers, piles of detritus and dirty laundry she has a piece of broken glass by her bed and I know I need to check whether she’s been self-harming again. When I try to tackle her about the homework and emails from teachers, knowing she’s been given a detention over it, the lies continue and she denies it all, meanwhile Ivy chimes in that several of her classmates were there and told her that Lily was screaming at the teacher.

Sanctions are taken; Lily’s computer is confiscated, the WiFi password changed, the PlayStation put away. Result; behaviour miraculously improves, or at least it does until Lily gets what she wants, at which point it inevitably begins to slide downhill again. This time around, her computer gone and access to the internet withdrawn, she snapped at me that no, she wasn’t doing the dishes as requested, as I’ve got nothing left to lose. Battle after battle, day in, day out. The latest? That by trying to ensure she does her homework, I’m triggering her. If excuses were pennies, I’d be very very rich. The situation doesn’t change, only my ability to cope.

There’s over a month to wait before the next CYPS appointment, I don’t know how long before actual treatment begins. School holidays are coming and I don’t know whether to be relieved or scared. The only option meanwhile is calling the CYPS Crisis team, which makes me incredibly nervous as I don’t know what it will entail, whether I will have any say it what happens to Lily at that point. Because also; this isn’t a crisis. This is just what everyday life looks like.

Praying for rain

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

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

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

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

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

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

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

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

Grand Day Out

(My Nan would have called this a “Knicky Knacky Noo Shop,” but I’m sure they’d prefer “Antique” or “Vintage”, Notting Hill.)

Lily has regular clinic appointments in London, which on the whole we tend to treat as a Grand Day Out, catching the first off-peak train and waiting until the afternoon rush hour is over before making our way home. A couple of times I’ve tried to fit in taking Lily to London while also getting Ivy to school but it caused to much chaos and stress. When the last trip meant an hour and a half’s delay on the train while Ivy was home alone, I decided enough was enough – Ivy comes too. Both children being off at the same time inevitably makes school suspicious, as if I’m determined to sabotage their education by secretly nipping off to the Seychelles for the day. But no – it’s a genuine hospital appointment, and I’m doing the best I can to balance everyone’s needs including my own. The trip is educational in its own way – as a former home schooler I recognise that everything has educational potential – and we usually end up in one of the museums, or exploring somewhere new. School holiday appointments bring their own problems – yes, we’re not missing school, but London is far more busy and crowded, proving too much for Lily’s Aspergers. Lily also refuses to use the Tube when it’s crowded, resulting in some epic walks across London to make it back to Paddington on time for the train home – this was especially difficult when I was hobbling along with plantar fasciitis, having to practise Lamaze breathing techniques to get me through each step of a three mile walk from Camden, having already been on my feet for most of the day.

(Sculpture or alien invasion, we couldn’t quite decide, River Thames.)

It’s hard to believe that I once wanted to live in London. I was all set on a career in The Media, without really knowing what that would look like, just that I’d be heading off to London to do exciting things in film and television or magazines. Instead I fell in love with Simon and moved to a tiny town where Media careers simply weren’t a thing. Now when I look back I’m not sure whether that was a wasted opportunity or a lucky escape – I’m not sure that I’d like the person that I’d have to become to succeed in that game. Certainly I quit my on-the-job training as a features journalist when I was being asked to phone an elderly woman who I knew was sitting in a hospital holding hands with her second husband as he was slowly dying from a brain tumour, to ask her whether her previous fiance had actually died in her arms or just on the floor. I couldn’t believe that anyone would think it was okay to do that, but the young woman on the other end of the phone didn’t seem to register that we were dealing with people’s very real lives and emotions and that there was a duty of care not to traumatise an innocent person for the sake of a single sentence of the story. I’d struggle to live in London now; the 24 hr hectic, non-stop pace, the busyness, the crowds, the glazed, unconnected look on people’s faces as they ignore each other in a bid to find personal space. It’s an entirely artificial lifestyle in a hard, artificial environment, something that I seem to struggle with more and more as I get older.

(We’ll take this one please, Notting Hill.)

The 2pm appointment cut into the day, leaving not quite enough time before or after to really do much. We decided to explore Notting Hill, finding brightly painted townhouses and a vibe on the chichi side of boho. One of the streets was unbelievably picturesque, each painted house seemingly trying to compete with the next, all with lovingly tended tiny front gardens that showed that even the smallest space can be transformed into a personal haven. We decided the house with roses spilling around the door and windows was our favourite. Neither of the kids have seen the eponymous film, but I pointed out some of the landmarks nonetheless; the Travel Bookshop, now a tacky tourist souvenir shop, the blue door that was supposedly Hugh Grant’s house, the cafe where he buys the drink he spills over Julia Roberts. The kids just asked who Hugh Grant and Julia Roberts were, and I felt ancient. We found a small public park in one of the squares, and sat to eat our sandwiches. There are countless such pocket parks around London, some public, some private, providing small sanctuaries of green to counteract the hectic pace of the city; more and more I find myself drawn to and appreciating such spaces.

(Pocket Park, Notting Hill.)

On the spur of the moment, we decided to take the bus to the hospital rather than disappearing back underground; remarkably I managed to work out which bus to catch from which bus stop. The drawback of the Tube is that you never build up a sense of London, how the areas connect and interact, the flavour of each district – each location is an isolated dot centred around the nearest Tube station. From the bus we could get a sense of people’s everyday lives, from the blocks of flats and corner shops, to the hidden Mews and gold Maserati. Plant pots balanced on windowsills, balconies dressed up with tiny gardens, a table and chair, or a washing line; little glimpses of lives being lived, of people claiming their spaces and dressing them up.

(Matching planters extends the wall height, creating a private courtyard, Notting Hill.)

After the rather intense appointment, we headed to South Kensington – Lily into the Science Museum while Ivy and I went into the V&A, relieved that Lily is of an age where I can let her wander on her own, mobile phone in hand. We’d intended to go look at an exhibition, but by that point we were both too hot and frazzled. Instead, we took our shoes and socks off and sat in the courtyard garden, dipping our feet into the water, instantly feeling calmer and cooler. A group of men in suits sat behind us, remarking to themselves that the toddlers had the right idea, going paddling, isn’t that what we all want to do, take our shoes and socks off and get in the water? I wondered what was stopping them. There were no signs up telling you not to put your feet in the water, no members of staff patrolling the perimeter. It was a very hot day. On some days I might have turned round and asked them directly, my own feet firmly in the water; what’s stopping you? Not on this day though. Too hot. Too overstimulated. I let them stew in their business suits. When we were ready to go, we rescued the fallen leaves from the succulents that had been planted beneath two tall trees. It was clear that these beds were not the right environment for succulents, and from the looks of it they hadn’t even been planted properly. Ivy picked up the fallen, plump leaves and stored them in her packed lunch box, hoping to bring them home and replant them.

(Giant bubbles outside the Science Museum, London.)

We came out of the V&A by the new side entrance, all gleaming white tiles and stone. The sun bounced off the white steps, dazzling us. I wish they’d planted a couple of trees instead. I’m not a fan of sleek, minimalist modernism, not when everything in sight is manmade, unnatural. Put a few trees in, a couple of raised beds, and I’d be happy. Instead, they’d made a sun trap even brighter, even hotter, to the point where it was uncomfortable for our eyes. I thought of the YouTube video I’d watched in the bath that morning, a couple in Mexico who transformed a wall in their house with re-used, repurposed plastic bottles, turning them into chains of planters, each one dripping down into the one beneath, the water caught in a reservoir bottle at the bottom and poured back into the watering can. A refreshing wall of green. I thought of the tiny balcony and basement gardens we’d spotted from the bus, of the smart front yards in Notting Hill, all cramming as much greenery as they could into tiny spaces. It seems a human instinct to bring nature into our living spaces, to prettify and green up our personal environments. Yet too often nature is simply missed out of the equation when it comes to public spaces. I’m with Hundertwasser and his tree tenants and grass-roofed buildings. The city is an alien enough environment; we’re simply not designed for such high-density, fast-paced living – there are even video adverts on the side of London bin lorries, for goodness sake. If we venerate design as being entirely man-made, if we exclude plants and trees as being too messy for our sleek, hip, spaces, we create more artificiality. We contribute to the chaos of the city. Sitting around the courtyard pond, an environment with grass, trees and cloud-trimmed bushes, everyone was relaxed. On crowded tubes, busy pavements and visually over-stimulating unnatural environments – adverts crowded in to every space, people are frazzled.

(Wild strawberries growing in public park, Notting Hill.)

Often on the train home, I head into the corridor long before our stop, knowing that once we’ve passed the final station before our own, we head through wooded valleys where the river winds through. The window open, I breath in the cool air, smelling the damp earth, calming my hyper-stimulated senses with the greenness of it all. There’s still the drive home, the kids to be put to bed, jobs to be done – and then hopefully the first sip of a much-awaited cup of tea before falling exhausted into bed. Wondering how on earth people manage to live full-time in cities like London, so cut off from nature, knowing that I’m glad I’ve opted for a quieter life. Knowing too that we all need more green – in our homes, our gardens and in our public and work environments. And if anyone could work out how to cover a tube train in moss and ferns, we should give them the horticultural equivalent of a Nobel Prize.