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.

Mary Poppins Syndrome

I got sick. Again. This time around it was supposedly just a cold, picked up from my Mum while we were visiting. But while Mum and the kids were under the weather for a few days, I’ve been ill for over a month with no sign of improvement. It’s a measure of how run down I am, I suppose. There simply aren’t any reserves left to fight with. So; long blog break.

In the last couple of weeks we’ve started our appointments with CYPS. So far Lily’s psychologist seems more concerned about me than Lily – at least, there’s the recognition that I’m too exhausted to start implementing new domestic routines to help with Lily’s behaviour. I’ve more than a sneaking suspicion that the Psych believes that everything will be fine if only I could be a bit more patient with Lily, and that a marvellous transformation will occur if I’m able to face every situation with calmness and positivity. There should be a law stating that no one can make that kind of judgement until they’ve lived with Lily for at least a week, and then multiply their stress by a total of fifteen years. Like yesterday, when the kids had agreed to make their own way to the school bus stop so that I could have a lie in, I then had to intervene over the phone as Lily was refusing to give Ivy her spare bus ticket – Ivy was crying, thinking she’d be left at the bus stop with no way to get to school and yes, Lily was quite happy for that to be the outcome. It wasn’t even 7.30 am, so goodbye lie-in and hello more stress. Still at least the Psych realised that I’m traumatised from the abuse during the divorce, and that the day to day demands that I’m facing are just too much to deal with. When I ran through the stresses I was facing, the psychologist looked at me in horror “But no one could cope with all that,” she told me.

Yes, I know, I wanted to scream. Here I am, not coping. There’s talk of what support will be put into place, referral to this and that, but I know better than to hold my breath. Too many times we’ve been promised support and none has arrived, so I’ll believe it when I see it. Either the support doesn’t exist, has sadly just been de-funded, the people delivering it are too flaky to make it consistent and sustainable, or the support on offer isn’t the support you actually need. Frankly, I want someone to look after the kids for a week while I get sent on an all-inclusive holiday – that’s the kind of rest I need. Or for someone to come round and cook dinner, wash up and hoover for a couple of weeks. Or drive the kids to school and back for me. Something tells me that these options won’t be included in the support package. When you’re this burned out, what you want is for someone to say Honey, go to bed. I got this.

Being so ill and drained all the time is incredibly frustrating. The pallets I’ve been collecting for months are laying around in the garden, ready to be turned into a shed – if only I had the energy to tackle it. There are plants and bulbs waiting to go into the ground. The decking attached to the garden cabin has rotted, because whoever built it didn’t think to put gutters on it, so that all needs redoing – as well as the roof finishing off properly (People, do not half-tile an already felted roof. Tile it all or don’t bother.) I keep forgetting to tackle the jobs on my list, such as getting home insurance quotes before it automatically renews, calling one lot of builders to see if they’re booked in to fix my shower, and calling the other builder to see about replacing the rotting doors. And oh – the dishes, the endless stack of washing up piling up in the kitchen. So I’m flunking at all the stuff that needs doing, never mind the additional stuff that I want to do on the house and garden. Right now, trying to make sure the kids get to school, we have food in the house and clean plates to eat it off is pretty much all that I’m managing. It sucks.

It sucks doubly because the kids are getting older. Which means two things; one, they should be old enough to help and take responsibility for themselves instead of me having to do everything for them. Two, they won’t be kids for much longer. And there’s the heartbreaking reality – I want them to be able to look back on their childhoods and remember the good times, not the living with an irritable, burned-out exhausted mother in a cluttered home where everything needs fixing. It’s like the bulbs for the garden – if they don’t get planted now, they won’t bloom in Spring. It’s too late. If I don’t start building the shed, the wood I’ve gathered will start to rot. If I can’t somehow pull together our lives and our home into something more harmonious, the kids will have grown up and left. As much as I want to heal and go gently on myself, there’s a timeline here. I can’t press a magical pause button so that the world will wait until I’ve caught up.

It’s Mary Poppins Syndrome, the desire to click my fingers and have everything fall nicely into place, preferably with the aid of a magical helper. Living – the real life we should be living – is deferred until the future when everything is in order. I have the firm belief that if I could just catch up with myself, get to a place where the house is in order, then life will begin to run smoothly and everything will be less overwhelming. I’ll be on top of things, instead of constantly skidding down the avalanche of chores and responsibilities as they pile up on top of me. No doubt life would feel more pleasant if I lived in a home that was always Instagram-ready, but I have no idea of how I’d reach that mystical stage without Ms Poppins’ intervention. The inbox is never empty though – even if by some miracle the house was “done,” it wouldn’t stay that way for long. Sustaining it requires energy, and that’s exactly what I’m lacking.

Clearly my healing and recovery needs to include my physical wellbeing and it’s fast becoming a priority. Doubtless the physical is also affected by the emotional/psychological, and vice versa; it’s hard to be upbeat if you’re constantly ill and exhausted, and stress/trauma will likely create ill health. Healing needs to take place across all areas, and apparently at the same time. So tomorrow I’m heading out to forage some elderberries, if any are still around, and maybe some rosehips too to make an immune-boosting syrup, on top of the supplements that I’ve begun taking. Time too to think about therapy, to start looking for help rather than struggling on alone, to make plans for recovery rather than waiting for Mary Poppins.

Spinal Tap and the Art of Survival

Another Spinal Tap week. You know the kind, when every time you manage to tweak your personal stress dial down to maybe a 6 or 7 (with autism in the house, it will never be below 5 unless several of us are unconscious), the Universe decides to crank it up to 11. So just as I was trying to build some order into our days, organising days out, insisting on chores and that Lily did some studying… a friend was hospitalised for almost a week. She has no family and is a single mother, which made her heavily dependent on friends to bring in changes of clothes, wash laundry as needed, bring her son in to see her. Most – almost all – of this fell to me, as it seemed very few were stepping up to help. It’s not possible to say NO to someone who is in hospital alone, scared and desperate, at least not for me. So my two have been left to their own devices – literally, computers and phones – while I’ve been driving to and from the hospital, dashing into the supermarket, collecting her son, cooking and houseworking, and still trying to squeeze in a couple of trips and activities for the summer holidays, all the time knowing that this wasn’t sustainable. Thankfully, as I write this, she’s now been released, but will still need a considerable amount of help at home; her home is half a mile away though and not fifteen miles, which makes it easier.

Several things emerge from all this. Firstly a documentary by Paul O’Grady about the working classes that I caught during the week in which he suggested that being working class was an attitude and set of values – the unspoken implication being that working class people had a stronger moral ethic about looking after each other. It had to be that way, helping each other out in times of illness and hardship, creating a web of kindness and loyalty that was the earliest version of the Welfare State. You helped each other, because you might be next in need. You helped each other, because you were up close with each other’s suffering, and one family going under could be any family going under. I’ve heard it argued that going wayyy back in history, the tribe’s hunters would share out the meat they’d caught – it wasn’t exactly easy to hoard it, pre-refrigeration. Stockpiling it or demanding that others paid a high price for it (pre-currency) just wasn’t feasible. Sharing it was not only generous, it boosted your social value to the tribe and created a debt of gratitude. If the hunter was injured or ill, it was then more likely that they would be looked after by the others. The anarchist creed; from each according to their ability, to each according to their need. Until relatively recently I’ve always believed that most people acted in this way, now I’m not so sure; a lot of people seem to be walking around wearing the attitudinal equivalent of Melania Trump’s I Really Don’t Care jacket. So; care. Help. Be kind. It’s revolutionary.

Second – thank God for the NHS. I’m trying to avoid politics on this blog, but it’s not as if politics are separate from real life. Things that our grandparents and older generations fought for are under attack again, as chunks of the NHS are sold off to private companies, workers’ rights are eroded through zero hours contracts and enforced “self-employment” for firms such as Uber, meaning that people lose the right to holidays, sick pay, pensions etc. Again, I thought that those battles had been won on the understanding that it was right and necessary to pay workers fairly, give them enough time off, look after them when they’re sick… but no, there are still too many bosses and CEOs who really Really Don’t Care and are more than willing to exploit others for wealth. I’m in despair at where our society is heading and that the fight – basically the fight to get everyone to treat each other with respect and fairness – is neverending. But in the meantime there’s a 10 year old boy who still has a mother, thanks to the NHS.

Third – if it were me that was ill, I’d be screwed. I don’t have any back up, no one to look after the kids, drive them to school etc. I really don’t know what I’d do and it’s terrifying. I will just have to add it to the list of things I’m not allowed to think about.

Fourth – I can’t change the circumstances. I can’t magic good health for my friend, a house with a parking space for me, or take away Lily’s epilepsy or ADHD. So it’s going to have to come down to changing my attitude – grrr, my hackles are up already at the thought of it – and developing better coping strategies. I’ve been complaining too much, which seems fair given the stupid amount of things I’m having to deal with, but which doesn’t actually help any. This creating a life worth living isn’t easy, particularly when the pressure keeps getting turned up, but I’m so aware of how my days have become about surviving rather than thriving, and wanting to change that. Better support systems are required – and let’s face it, we’re talking self-support here – somehow finding habits and actions that build positivity and peace of mind. I also need more downtime and mental space, particularly if I’m going to seriously start writing again; I can squeeze in the time, but my brain is too frazzled to do anything with it. Which makes it sound like I need to take up meditation. Bother. Perhaps I can transmute this into more gardening instead?

Fifth – I’ve been determined to keep up with my newfound exercise. I refuse to use the word regime. Still fitting in an early morning swim, a yoga class, a Pilates class before heading off to hospital or the To Do list. Before now I’ve had gym memberships that went entirely to waste – exercising was something I should do rather than wanted to do, and working out felt like punishment. Now, I’m treating it as me-time and approaching it gently, making it far more sustainable. I’ve still got absolutely no desire to head into the proper gym and attack the treadmill or cross-trainer, and so I’m not going to beat myself up about it. I might be the youngest in my exercise classes by a good 20 years, but hey – it’s working. Exercise is becoming my support rather than a bugbear, which is a lovely, positive shift. Along with intermittent fasting and a general reduction in snacking and comfort eating, I’ve been able to lose almost a stone over the past month. I guess this ties in with the previous point, creating support systems and positivity. Finally, I’m seeing some kind of recovery in action. Now I just need to expand that into the rest of my life…

On anger and housework.

Bone weary. The house unravelling around me. A month ago I had the downstairs looking reasonably clean and tidy to the point where I wouldn’t be embarrassed if someone called in. Now I’d have to barricade the door. The relentlessness of it is wearing me down, while frustration and resentment build up that the kids ignore the chores while I nag and nag until I’m screaming. When I finally crack and yell and get either of them to at long last do the thing I’ve spent days asking them to do – take a bath! Take your clean washing upstairs! Bring your laundry down to the basket! Please fetch the dirty glasses and plates from your room! – they look at me like I’m being entirely unreasonable.

This is not how I want my life to look. Or feel.

Last weekend I had to drop everything to take a friend to hospital, about fifteen miles away. I sat with her for two hours, until they decided she needed to stay in for 24 hours. She didn’t have anything with her, so I drove back again to pack an overnight bag, making sure I washed the dishes sitting in her sink so she wouldn’t have to come home to them. I stopped off to buy a couple of drinks and snacks to make sure she didn’t go hungry if the NHS food wasn’t up to much, and because there’s not a lot of choice of drinks other than tea and coffee. Back to the hospital, keeping her company for another hour until visiting time was over and she was being taken away for an X-ray. It was about six hours all in all, and I didn’t mind any of it, I’m glad to be of use to her. “This is the closest thing I’ve had to a night out in a long time,” I told her. I wasn’t even joking.

What I minded was texting the kids at 9.15pm to let them know I was on my way home, only to be told that they hadn’t cooked enough food for me after all and I’d need to stop off and buy some dinner for myself. Thank God there was a Tesco Express close to the hospital. Getting home after 10 to discover that no one had thought to wash the dishes but had just piled up more, and that the laundry – my bed linen – was still hanging on the line in the damp evening air. Lily was still playing on the computer in the living room – despite having assured me in an argument earlier that day that she was perfectly capable of self-regulating her computer time, breaks, conduct etc.

“Lily, you’ve been playing on it for over seven hours straight.”

“No, I’ve taken some breaks, I was doing Wii Sports with Ivy.”

Taking a break from the computer to play on the Wii is not what I consider a legitimate break. It took another twenty minutes to chase her off it and into her bedroom, then I sat down with a sad-looking microwave carbonara that went against all of my dietary rules, in a living room full of computers, wires, papers and general detritus.

This is not how I want my life to look. Or feel.

I wanted to flop down on my bed, exhausted, and go straight to sleep. I had to make it first, with slightly damp sheets. I tried to convince myself the dampness would be refreshing after another hot day.

Morning, and the messy kitchen still needs to be tackled, the dishes are still waiting to be washed. A mouldy glass of water appears overnight, brought down from someone’s bedroom. It takes some doing to create mouldy water. The garden needs watering, and the weeds need pulling before they take over. Another load to put in the washing machine, and when did Ivy last change her bedding? A meal plan needs putting together, a shopping list made and presumably shopped for. There are bricks to collect from a house around the corner, before the skip is taken away tomorrow, they’ve said I can have them for my garden to make paths with. I need to cancel my car insurance and hire a handyman and fill out the forms to reclaim the travel costs from Lily’s last appointment, and sort out a new password for my bank account. I’m still feeling angsty and agitated after a week in which several strangers saw fit to have a go at me over things that really didn’t warrant it – triggering as hell after 4 years of Simon blaming me for stuff that wasn’t my fault. Half of me wants to curl up under the sheets and not get up, the other half is screaming that I should just jump in my car and drive away, escape and leave it all behind. I’m going to have to have the talk with the kids again, the same one I keep having, the one that goes I need you to help me. You live here too. You know what jobs need doing. Please do some of them without me having to constantly nag and beg for help. I really can’t do everything on my own. I am so so sick of this one-sided conversation. I’ve left a sign saying No Computer on Lily’s computer, but I can hear her playing. When I go down, she’s on the Wii instead, no chores done, no studying done, wearing the same clothes she’s had on all week and when I try to remonstrate that she shouldn’t be playing games when there’s jobs to be done, she’s utterly unrepentant.

“Get off my ass,” I hear her muttering as I leave the room. I explode at her, pent up with all the jobs I’m trying to do at once.

Do I have to die? Do I have to actually die before someone helps me?

It’s the relentlessness of being a single parent that’s grinding me down. There’s no pause button, no support, no respite. Not a single day off. Not a single night off. I need a holiday from my life, basically. A week where the stress and struggle can stop. I may as well be asking to go to the Moon. And beneath all this – the hurt. The injustice. The anger burning a hole through my chest. Because this is what Simon has done to me. I’m struggling day after day after day with no hope of respite, no hope of any improvement, while he lords it up in their big house, with parking and garage, with holidays whenever they want, with absolutely no responsibilities, no kids to make a mess or interrupt their plans, while still claiming that he is the victim in all of this. I want to scream. I want to throw rocks at his windows and plenty of other stuff that for legal reasons I should definitely not admit to in a public forum. And I despair. Will I ever be healed of this? Of him?

This is not how I want my life to look. Or feel.

I don’t want my life to be a constant reminder of the abuse that I was put through. But it’s hard, when every single day the house is still too small, and I don’t have anywhere to park, and I’m bent double under the weight of holding it all together and raising the kids single-handedly …and Simon’s got away scot-free. Without Legal Aid, there’s no way I could afford to take him back to court to get a fairer settlement, even if that was an actual legal possibility, which it probably isn’t. There should be a free tribunal, a couple of years after divorce, that you could go back to if it’s obvious that your ex lied about finances and circumstances and have any imbalances redressed. Too often divorce settlements are based on equal childcare that somehow disappears once he’s won himself a bigger house and more money than he’d have got if the judge knew the kids would end up with you full time. Sadly I’ve heard too many similar stories to mine and the injustice burns; what I went through, what so many other women have been put through, or are going through right now.

Every time I struggle to find a parking space for the night while I’m exhausted and having to carry shopping bags a quarter mile back to the house, I think of Simon with his garage and driveway. Every time the house feels cluttered and overwhelming and I despair of ever turning our too small house into a comfortable home, I think of Simon with his four bedrooms and two receptions. Every time I give up and close the holiday websites, knowing I just can’t afford to take us away during school vacations, I think of Simon, able to jet away with Astrid off-peak, whenever he wants. Every time I’m faced with Lily raging at me over school work, or being asked to take a bath, or refusing to get off her computer for a break, I think of Simon, who never has to bother with her behaviour. And so on, and so on. How do you heal when the very cornerstones of daily life are a trigger?

This might not be how I want life to look or feel, yet I have no idea of how to get from here to there. So many of us are in that same boat, trapped by financial circumstances that we have little chance of improving, certainly not when other factors are in play; children, disabilities, divorce, trauma, illness, family, lay-offs. If you have money, a solution is affordable for so many of the obstacles in life. If not, the obstacles seem insurmountable, blocking the path to earning the money that would ease the situation.

My friend texts me, she’s going to have to stay in for another 24 hours and needs me to bring more clothes. Here I am complaining about my life while a friend is fighting cancer. Another wake up call, but I’m getting angry at how it’s the good people who seem to suffer most. Prayer, Lottery ticket, a giant red button to just make things stop for a while; I don’t have the answers to how to make life better right now. I really wish I did. In the meantime; just keep breathing.

Not waving, drowning.

7.30am. The water feels deliciously cool as I walk down the steps into the pool. The kids have been dropped off at the bus stop, and I’ve realised that rather than turning around and going back home, I could keep on driving and get to the leisure centre for an early morning swim. I’ve registered with a local scheme that gives a free swim pass to children with a disability, and to their parent/carer- it’s time to make use of it. I’m not much of a swimmer, but it’s not so much the swimming itself, it’s the noise and splashing and kids jumping in over my head, and the wet floor that brings me out in an overwhelmed, hyper-stimulated anxiety attack. At this time in the morning though it’s quiet, just me and the pensioners. I desperately want to get back into shape, feel fitter and healthier but since my battle with plantar fasciitis last year I’m nervous about putting my feet under strain. This seems to be the right answer; quiet, calm, gentle. My old-lady breaststroke style of swimming is entirely fitting here, fast enough to still count as exercise, yet giving me the space to iron out my thoughts and ease into the day. I begin to get excited; I’ve found something that works for me, 20 minutes of respite, of precious and healthy self-care to start my day with. Can I keep this up during the holidays when I don’t have the school run? I ask myself, feeling that the answer is still a yes. I know I need this.

I swim on the Monday and Wednesday. Friday morning, I’m tired but push myself to pack my swim bag anyway – I want to make this a habit and I know I’ll feel better for it. My membership card scans on the way in and I head to the changing room, only to hear the shrieks of over-excited kids already in the pool. I peek in and see lots of children throwing a ball around in the pool. Evidently, it’s not the early morning session I was hoping for. Back to the desk; Sorry, I’ve only just started coming in the mornings, is it on at a different time? The receptionist explains that the swim session doesn’t start until 8am on Fridays. A 20 minute wait; I decide to head back to the car to retrieve a book to read, given that the cafe doesn’t open until 9 and there’s absolutely nothing to do but stare into space in the meantime.

7.55. I’ve been reading in the car, but now put the book away and head back in for a swim. This time however, my card doesn’t scan. “Can I take a look at your card?” the receptionist asks, scanning it at her desk. “Oh, there’s nothing on your account, you need to pay.” I explain that I’m a member of the free swimming scheme. “No, that’s only if you’ve got the young person with you.”

I leave.

There are tears in my eyes as I stop off at the 24 hour supermarket to pick up something for dinner. I’m struggling not to cry as I drive home. I check the website for the swim scheme. It’s badly worded, talks of free swimming for disabled children and their Carers, but says nothing about it being only when you’re accompanying your child. I even phone up to check.

“Is it possible for the organisation to ask for Carers to be able to swim for free, just to give us some respite?” I ask.

“No, the leisure centres are doing us a favour as it is,” she answers. As if the leisure centres weren’t raking it in already, and also receiving public funding.

“But the over 60s swim for free?” I’ve heard the chatter in the changing rooms – these are pensioners who are not struggling financially. I don’t understand why they can swim for free but Carers can’t.

There’s the bottom line; I can only swim for free if I’m taking Lily. Except of course, I can’t take Lily to the early morning sessions, even if it didn’t clash with the school run; she’s far too loud, too chaotic. There would be complaints. Similarly, it’s hell for me to swim during Lily-friendly sessions; I just can’t bear it when it’s so loud and crowded, that adds to my stress rather than relieving it. I desperately need respite, and I desperately need exercise – but I will have to pay for both. If I managed to get a concessionary swim price, it would be £2 per swim. £6 per week. Over £300 a year. Non-concession, it’s £3, £9 and over £450. Our much-longed-for holiday, in other words. So while I could bumble along paying £2 per swim, I would no longer be enjoying the sessions because I’d be thinking too much about what they cost. It would cease to be me-time and become something I was paying to do in order to get fit. No longer a treat. I should be able to move money around, do it anyway – yet mentally and emotionally something has shifted in a way that’s hard to explain. Perhaps it’s because the free swimming felt like a gift, an acknowledgement that caring for an autistic child is so difficult and here was somebody who wanted to help me in some way. Having to pay turns that into Tough. Get on with it. Perhaps I’ve just reached the end of my rope, can’t take any more knock backs. Perhaps it’s anger at how once again, the people at the bottom of the ladder miss out; if you’re struggling financially then exercise becomes a luxury. Realistically, even “free” activities require money; eg a decent pair of trainers if you’re taking up running, otherwise you’ll wreck your feet.

I’m left feeling like I can’t have nice things. That the Universe has some kind of personal grudge against me, that this has been a pattern for over 10 years now; any time that I find something that makes my life easier or happier, it’s taken off me again. Just a taste, just enough to get excited, then – poof! Gone. That I want to be happy, grateful and generous in this life – but events keep conspiring against me to a point where by rights anger and bitterness should surely be the default emotions. It’s so much work to try and reverse this negative spiral – yet it’s like pushing a washing machine up the helter skelter; crazy, difficult and the minute you try to rest for a minute, it’s going to slide back down and crush you.

A few days pass. I talk to Mum, who does her best to talk sense into me. “That’s only what you’d spend on coffee and cake in a cafe, and it would be doing you good,” she reminds me.

“Yeah, it’s just I’ve taken out gym memberships before and just wasted them, haven’t gone in.” Being surrounded by no-neck muscle-grunters and perky gym bunnies is not my idea of fun.

In the meantime, my blood results come back from the GP; surprisingly my thyroid is working just fine and for once I’m not anaemic – my constant tiredness is a medical mystery. However, I’m now officially in the pre-diabetic stage. If I don’t get my weight, blood sugar etc under control then I’ll likely develop Type 2 Diabetes within the next 5 years. I’ve been wanting to improve my general state of health – the blood results are the final kick in the pants that I need. It’s back to the 5:2 plan, to cutting my emotional dependency on sugar and comfort food and to getting back into shape. Perhaps the lesson that I need to learn is not that the Universe doesn’t want me to have good things, but that it’s time to start looking after myself properly, which means being willing to invest in my health . I call the Leisure Centre.

Hi. I want to take out membership.

Everyday crisis

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

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

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

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

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

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

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

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

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

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

The Psychopath Test

We’ve been at my parents’ house for a few hours and have just been summoned to dinner. For once, Lily comes downstairs relatively quickly – I’m relieved as Dad gets cross if people aren’t prompt to the table. She’s not happy though.

“I’m having a crisis, Mum,” she whispers.

“What is it, love?” I ask, hugging her. “Did you and June split up?” That’s the worst, most obvious thing I can think of. I run through more possibilities; online trolling, bullying, discovery of a large gangrenous tumour. Once I’ve gone over the worst options, I turn to humour – this is what works best with Lily. “Has your leg fallen off and you can’t sew it back on?”

“No, it’s still here.”

“You’re about to be arrested for drug dealing?”

“No.”

“Someone discovered the body?”

“No.”

“You’ve finally realised you’re an alien?”

“Well yes, but that doesn’t bother me.”

She refuses to talk about it within earshot of my parents, and dinner is ready so I’m forced to wait until after we’ve eaten, wondering what on earth it is. I figure it’s YouTube-related, another spat with someone over videos and comments that should never have been posted. When dinner is over I track her down and she hands me her tablet to watch something. Yes, it’s YouTube, but rather than a flame war it’s a series of videos with titles like Are You a Psychopath, and The Psychopath Test.

Lily has been watching them and is now worried that she’s a psychopath. I have no idea how I’m supposed to handle this one. Perhaps I should have just laughed it off, told her it was a load of rubbish and not to worry – yet to me, that comes across as not really listening to her fears. She insists that she wants this investigated further, and I try to reassure her that she will be able to talk about to the the psychologist at CYPS when she has her appointment. I tell her the videos are sensationalist and irresponsible, and the very fact that she’s concerned enough about whether she’s a psychopath is probably proof that she’s not a psychopath. That she’s 15, her brain isn’t fully developed yet, particularly when it comes to feeling empathy – that this is true of all teenagers, who are notoriously horrible to deal with but inevitably grow out of it. That she has Aspergers and ADHD, which accounts for a lot of her concerns. That liking black coffee and dark chocolate does not make you a serial killer, that much of the “science” being quoted is incomplete or misrepresented and used out of context. That only a trained psychologist or psychiatrist would hold the answers to any of this, not some random YouTuber.

We talk about lying, and that I think it has become a problem for her. She admits something I’ve long suspected – that when she tells a lie, it somehow becomes true for her. I tell her that this is something I just don’t understand, that she must surely know that it’s not true. We discuss how Simon’s lies in court were so painful to me, that effectively he became sociopathic, lying to manipulate and achieve what he wanted, and the hurt this has caused. We talk about how Lily struggles to accept responsibility and tends to blame others for anything and everything. That again, these can be issues with ASD/ADHD and don’t mean that she’s a psychopath. That not all criminals are psychopaths and not all psychopaths are criminals – although a great many world leaders and CEOs would fit the criteria, particularly Trump. I try to explain that none of us are perfect, we all have our character flaws and that being aware of our issues means that we can try and overcome our difficulties – that we should all try to be the best we can and to make the world a better place. Lily admits she doesn’t really feel guilt or remorse over her wrongdoings, that she doesn’t really care how other people are affected as long as she gets her own way. I don’t tell her that I’ve secretly had concerns when her patterns of behaviour match Simon’s; lying, blaming, lack of responsibility and remorse, that I’ve wondered whether she will be abusive to others in this way as she gets older. Going down that line of thinking wouldn’t be helpful to anyone at the moment, least of all Lily. She’s 15 and incredibly immature, with an autistic spectrum disorder, ADHD and anxiety and control issues thrown in on top. She’s growing up with all of this, plus epilepsy and gender identity issues on top of the usual teenaged angst, school, homework, exams, dating etc. It’s enough.

I tell her it’s a bad idea to watch these kinds of videos. That she’s my baby and I love her and don’t think she’s a bad person. That she’s still got a lot of growing up to do and it’s too soon to tell who she’s going to be, but it’s not likely that she’ll suddenly become a mass murderer; not that all psychopaths are killers anyway. Afterwards, sitting outside in the shade of the evening, I wonder whether I’ve handled it the right way or not, whether I should have laughed it all off, refused to give it any credence. In reality, Lily’s behaviour over the past few months has been so extreme and bizarre that I can’t just shrug it off. We both know that she threatened me with a knife, that she’s been claiming she can see demons and shadowy figures in the corners of the room, that she was self-harming. I’ve been going from one doctor to the next trying to get answers, while school pushed through with a CYPS referral. My main concern this week is how well she’ll cope with her work experience, not whether or not she’s a psychopath – but now her worry over it becomes my issue to deal with.

Is this normal? I find myself wondering. Is this a thing now, do most teenagers question whether they’re psychopaths or not? I don’t remember ever worrying about that when I was a teenager, but then I didn’t have YouTube. No doubt someone put those videos up for a laugh, for entertainment, a bit of click bait. Sometimes I wish the Internet had a caretaker – that sounds so much gentler than Internet Police – someone who would go through content, quietly deleting the hate, the trolling, the misogyny and porn, the racism, violence and general crassness; all the stuff that’s basically not helpful when you’re trying to raise kids, never mind live in this world yourself. This is new territory for all of us, the biggest global experiment ever, and at times it’s like watching a baby playing with scissors. Lily struggles to manage as it is, and I struggle to manage with her. Go gently, I try to remind myself, but the internet is not a gentle place and the internet is shaping my children.