Creating a life worth living, Home, parenting, Self Care

How to Reset your Sanity

Why is it that bad habits are so easy to create and so hard to break, but good habits are hard to build and easily lost? Before Lockdown I had created a strong early morning routine; meditation, herbal tea, a five minute yoga session, journalling and a fresh celery and apple smoothie, before driving Ivy to school – and three days a week immediately hitting the gym. I know. Impressive, huh? But by this past weekend, I had started sleeping in (and staying up too late), reaching for my phone before I meditated, forgetting the yoga and journalling and skipping the smoothie in favour of a coffee and croissant. Dishes were hanging around too long, I was failing to make the most of the good weather, not going for my state-sanctioned daily walk, and Saturday chores didn’t happen. A stress-migraine wiped me out for much of the weekend, and the depressing reality of being a single parent is that it really is down to me to keep the ship afloat. If I’m not on at the kids to do their chores, it simply doesn’t happen – no matter that there’s a chores rota pinned to the wall, no matter that they’ve had years to get used to the idea; unless I specifically ask/nag/yell, then it won’t happen. It’s up to me to keep everyone on track, including myself, otherwise things fall apart with alarming speed.

The shock to my system last week, resulting in the stress migraine, was the rapidly-acting catalyst to everything falling apart. The warning signs started to ping red – staying up stupidly late to watch a film I wasn’t that interested in, then sleeping in the next day after a bout of insomnia. Waking up with a feeling of vague dread. Repetitive thoughts beginning to circle. Realising it had been too many days since I last took a shower. Not wanting to cook, or wash up. Outside feeling too bright, too overstimulating to deal with. Spending too long playing Candy Crush. Craving sweets, the healthy eating plan forgotten. Good habits abandoned, shadow comforts taking over. With it, my mood started deteriorating. It’s a vicious circle; low mood creates executive dysfunction, so the healthy habits and regular routines start to slide away, which means the unhealthy habits creep in to replace them, which lowers your mood even further, which means you’re even less likely to do the stuff you need to do… and so it falls apart.

Most days I still feel like a recalcitrant teenager. I marvel that the rest of the world seems to think that I’m a responsible adult – it doesn’t feel that way to me. A lot of it is ADHD, which can completely paralyse you and prevent you from doing what you should be doing – even what you want to be doing at times. There’s no actual explanation, you just can’t do it. Which is why it’s so important to create structure, to normalise routines and habits, so that they become as standard as brushing your teeth. After a year or more of trying, meditation has finally become a daily habit – my streak on Calm is now an unbroken 108 days; it would be almost double had I not had an overnight stay without WiFi last December. Yet for much of that time, I had to push myself to do it; create reminders so I wouldn’t forget, stick to the same time each day, as soon as I could after waking. It’s this aspect that I’m trying to explain to Ivy and Lily – that we all have to do things that we don’t want to do, and that we have to push ourselves to do things that will be healthy for us in the long run, even if we don’t feel like doing them in the moment. Like going for a run, or quitting sugar, or hoovering. I never feel like washing up, I tell them. But I hate coming downstairs to a dirty kitchen in the morning and it starts the day on a bad note.

Knowing I was slipping meant making a decision – to continue the downward spiral, or hit the reset button now. I reached for my journal, scribbled out what I’d been feeling and how I’d been struggling. Made a plan to pull myself out of the slump, listing what I needed to do each day to feel like I was progressing forward again… then realised it was ridiculously long and I was putting far too much pressure on myself. Separated out what was a daily must-do, and what could be spread out over the week. Woke up this morning and pushed on with re-installing the habits that I need to protect my mental health. Today that looked like writing an emergency letter to the CMS and then queueing outside the Post Office to send it by Recorded Delivery (letters have mysteriously vanished before now…) and then balancing that stress with a couple of hours spent in the garden, starting off seeds and then reading. I even paused to photograph the beautiful blossoms on a nearby tree on my way home, focusing now on the positive. Miraculously, with me feeling back on track and much calmer, both kids spontaneously appeared in the garden too, without me nagging them to come outside – they are refusing to set foot out of the house at the moment. It’s the Bagpuss effect. Washing was hung on the line, my bedlinen changed, a tasty dinner was cooked, the dishes washed, the floor mopped. Tomorrow I’ll wake feeling a bit more sorted, with a stronger impetus to carry on with the good stuff. It just took a good push to get me over the inertia.

So if Lockdown fever is starting to kick in and you’re losing track of the days, take a moment to reset yourself. Most things can be fixed by turning them off and back on again, including people. A journal or day planner is a must – think about what you want to achieve during Lockdown. This might look a lot like Just surviving it with as much of my sanity intact as possible, rather than Write a sequel to War and Peace, but that’s fine. Define what surviving it with your sanity intact looks like – does it mean showing up each day wearing full make-up and office-ready appearance, or going for a daily run, or getting through a whole day without yelling at the kids? Once you know what it looks like, brainstorm how you’re going to achieve it. What daily routines do you need to superglue in place? And when you find yourself slipping, it’s time to grip tighter rather than let go. So much trendy self-improvement talk is about the need to let go or go with the flow – but there are also times when we need to dig in our heels and grab a firm handhold to climb up on rather than plummeting into the abyss. When inertia takes hold ask yourself Do I want to spiral down or do I want to rise up? A little push can go a long way.

abuse, Creating a life worth living, Home, parenting

Survival Instinct

 

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(From Pinterest, original author unknown)

I try to remember that long queues snaking outside the shop have been a normal part of everyday life for millions of people throughout time. The scene feels reminiscent of footage from the Soviet Union back in the 80s, when people didn’t even necessarily know what they were queueing for – you joined the queue and hoped that the food you needed would be there at the end of it. Which essentially was exactly the same situation that I was now in, queueing outside Tesco at 8.30pm, homemade face mask in place, anxiety levels rising and a handy stress-related migraine rapidly building. Trying to follow the newly installed one-way system without missing anything on the list, trying to find alternatives when what we needed wasn’t in stock – no pasta, no rice, no flour, no chicken flavour Super Noodles, trying to maintain the requisite 2m from everyone else… supermarket shopping was stressful enough before Covid19, but it turns out there was a whole new level of pain to overcome.

The stress migraine had largely formed beforehand, with a letter from CMS informing me that they had reversed their original decision and were now ruling in Simon’s favour, judging Lily to no longer be in full time education, so he no longer had to pay maintenance for her. This after he sent false information to the Child Benefits office, telling them that Lily was not in full time education after being expelled from college, ignoring the fact that I was legally home-educating her while she was attending her new college part-time. Having finally won the EHCP we needed to get Lily extra support, she should have now been able to attend full time… except that college was now closed due to the Coronavirus crisis. I had successfully appealed the Child Benefits decision, largely due to the fact that Lily had previously been home educated age 5-8. If that hadn’t been the case, Simon might have been able to get away with it, despite having thrown Lily out and refusing to honour the “equal shared care” Child Arrangements Order that he’d insisted on obtaining. Of course, he’d then tried to use that Order to claim that he retained shared care and shouldn’t have to pay maintenance, but thankfully the CMS ruled against him. Some men will do anything to support their children… others will do anything to get out of paying child support.

With everywhere closed for the Easter Bank Holiday, it was impossible to get any further advice or take action until the following Tuesday, at which point it would be the familiar half hour wait to get through to CMS and explain they’d made their new decision based on false and misleading information. Which meant an entire Bank Holiday weekend of anxiety – would I have to wait 6 months on reduced maintenance in order to put my case to appeal, missing out on almost £2000 of payments? Would Simon have to pay this money back, or would he yet again get away with deliberately misleading the authorities?

Every time you fill in an official form, it makes it clear in BOLD CAPITAL LETTERS that deliberately sending false or misleading information is an offence and could result in a fine or even prison sentence. My experiences have shown this to be a lie. Simon has so far given false and misleading information to the Family Court (during 2 separate cases), CAFCASS, the police, Social Services, Child Maintenance Service (more times than I can count, but I think we’re onto 9 appeals now?) Child Benefits Agency and what would have been Her Majesty’s Courts and Tribunals Service had CMS not already reversed their decision. I’ve been left fighting false accusations and fire-fighting the consequences for six years, while the authorities do nothing to stop him. It’s exhausting and demoralising and has left me begging them to take action. The system simply doesn’t recognise the more insidious forms of domestic abuse and provides no protection. Abusers are able to exploit loopholes – for example the disgusting way that Child Benefit does not take into account the lack of educational provision for autistic teenagers at 16+. Or they refuse to follow court orders, knowing that without any jurisdiction for arrest, there’s absolutely nothing you can do about it unless you have enough money to take them back to court.

Having just fought a battle over student loan repayments, and then Child Benefit payments, all under the shadow of Covid19 and lockdown, I really don’t need yet another battle. I’ve been battling for six years now, I’ve had enough. Simon and Astrid have repeatedly taunted me that I need to “move on” and “get over it” – yet they’re the ones making it impossible for me to do so. “Move on” and “get over it” in this context seem to mean “We want to ignore the court orders, refuse to look after Lily, pay absolutely no child maintenance and continue to abuse you as much as we like, while you just shut up and take it.” Without recourse to Legal Aid to take him back to court – Legal Aid is only paid out for cases of domestic violence in which it can be proved that you have called the police for your own protection, or have been hospitalised or required medical treatment, likely on more than one occasion – there seems to be nothing I can do to make him stop. And as I’ve already discovered, Court is useless when you’re up against someone willing to lie about absolutely everything, and a Court Order is a waste of paper if it doesn’t come with power of arrest.

I got through my shopping while fighting back tears and counting my breaths to avoid panic attacks. I bought myself a large bar of chocolate as some kind of solace; I will emerge from lockdown looking as if a Beluga whale had miraculously learned how to walk. Arriving home, I asked the kids to help unload and pack away, while I collapsed on the sofa with a couple of paracetamol and an emergency glass of Coke, clutching an icepack to my forehead. Naturally they started squabbling, then Lily refused to do the washing up that she should have tackled hours earlier, saying she was “too busy.” Doing what? I wondered, but it turned out to be playing Fortnite. Simon does not have to deal with any of this, I reminded myself. Simon is not having to keep both of us children alive, fed, happy, entertained and educated during this pandemic. Simon has not even bothered to get in touch to see how the kids are doing. People try to make it better by saying “Oh well, he’s the one missing out,” especially as neither of the kids want to see him any more – but the truth is that the kids are missing out, whether that’s missing out on the money they should be entitled to, or missing out on having a mum who isn’t ill or irritable with stress, or missing out on having a loving and supportive father. It sucks, frankly.

Life goes on. Next day, with a headache still hovering around the edges, I find the appeals form online and fill it out, ready to send if I can’t convince the CMS to reverse their decision again on Tuesday. I have stopped taking this personally, I realise. Simon’s shenanigans are now nothing more than an administrative and financial hassle. I’m the one who has actually moved on, while he still lashes out vindictively. Meanwhile Lily miraculously does the washing up without me having to nag her. They both fight over the dodgy flavoured Super Noodles. Ivy tells me about her hamster-related dream and I tell her about mine, involving dating a mysterious violinist captured by gangsters who threatened to cut off his fingers. I sow a few seeds and water the garden, admiring the daffodils I planted in the Autumn. There will be pizza for dinner and an at-home Movie Night. We will get through this. We’ve already been in lockdown for the past six years, we’ve gotten good at surviving.

Creating a life worth living, Home, Self Care

The new normal

Laundry and pasta

Several seasons into The Walking Dead the tattered bunch of survivors reach a community that has been sheltered from the zombie apocalypse. When talk turns to the need to head out on a supply run, one of the community women whines on and on about getting a pasta machine. Oh the pasta she could make if only she had a pasta machine. To a group that has been busy fighting for their lives in a dystopian nightmare, the notion of searching for a pasta machine is beyond trivial, it makes her seem incredibly trite, spoiled even.

Last week, with the supermarket shelves emptied of pasta, the thought of a pasta machine started to become an obsession. I’d been casually wondering whether to get one for a while, but I’m not keen on filling my kitchen with barely used gadgets. But if I bought one now, I could make pasta despite the shortages! The irony of becoming the crazy pasta machine lady from The Walking Dead did not escape me.

I recognised that I was fixating on something that wasn’t that important in the grand scheme of things. Buying a pasta machine would not reduce the risk from covid19. Perhaps it might allow me to feel a measure of control -the ability to make pasta- in the face of an uncontrollable pandemic.

A decision needed to be made; rein in my brain, accept my powerlessness and think about more practical matters. Or buy the damn pasta machine just so I could stop obsessing about it. Well reader, as the above picture shows, I bought the damn pasta machine. There was money in the bank account and it seemed like the easiest solution; the obsession immediately stopped. Tonight I made fresh pasta for the first time – it took over 2 hours and I scalded my hand, but it was delicious.

I know myself well enough to know that if I hadn’t bought it, I’d still be obsessing over it, turning the idea over repeatedly, should I or shouldn’t I…? Buying it has quieted my mind. Hopefully it will get enough use to be justified, if not there’s always eBay.

This may well sound as trite as Crazy Pasta Machine Lady did, but it runs far deeper. We’re strapped in for the long haul; potentially months of lockdown, maybe on and off for much of the year. Nobody knows how this will go, whether it will play out better or worse than the projections. Which means living with months of anxiety and I know from 6 years of toxic divorce how damaging that is.

We’re used to having a time limit on our disasters; two weeks and the News has moved on. We’re used to feeling relatively in control of our lives. Having control stripped away for who knows how long can feel unbearable. Our hearts race, our breath is shallow, we lay awake at night, we jump out of our skin at the slightest provocation. This is our new normal and new coping strategies are required to get through it. Although it might feel that we’re not doing much if we’re not battling it out on the frontlines as a key worker, it’s crucial not to underestimate the strain involved in keeping the home fires burning. Treat yourself with gentleness and compassion. And if a pasta machine is going to help, in whatever form that might mean for you, then buy the damn pasta machine.

Creating a life worth living, Home, parenting, Self Care

Ordinary miracles

The dishes are washed. Everyone has been fed. There are clean clothes, towels and bed linen tucked away in drawers and wardrobes.

Sometimes we forget how miraculous the basics can be. Hot water pouring out of a tap, or channelling through pipes to heat the house. I didn’t have to walk miles to fetch that water, nor send my children out to gather sticks to burn in order to heat it.

We forget too how many ordinary miracles we perform on a daily basis; the unappreciated wonders of maintaining a home, keeping everyone fed and clothed and as happy and healthy as we can manage. We have appliances our ancestors could only dream of, Hoovers, washing machines, cookers with controllable heat – yet such increased convenience has brought increased responsibilities. Laundry would once have taken all day, once a week- now it’s most days, fitted in around work, school runs, shopping, cooking. The number of tasks we accomplish each week can be astounding, yet we barely notice them. Most of them don’t count as accomplishments in a society focused only on financial success. Our minds are frazzled, our souls weary.

Perhaps this virus has shown us the value of the ordinary. Our heroes are not only the medical staff battling to save lives, the scientists searching for a vaccine or cure, but also the supermarket staff serving frightened customers and stocking the shelves, the delivery drivers keeping the nation going. People who were once considered too ordinary to admire, people making minimum wages- it turns out that they are the ones we really need.

Washing the dishes is the most hated job in the household. Nobody wants to do it, the kids complain loudly and do their utmost to get out of it when it’s their turn. Some nights I simply don’t have the energy after a day of running errands then cooking dinner, but it’s hateful coming downstairs next morning to a kitchen piled with dirty dishes. I would panic too that it was evidence I wasn’t coping, that my ex would find a way of using it against me to prove I was an unfit mother.

Since moving house there’s been more time, more space, perhaps even more energy. The dishes are getting washed every night, the kitchen floor swept and mopped. Remembering the times when it felt so hard to make it through the day, when the dishes piling up felt so overwhelming, I’m aware of the ordinary miracle that a clean kitchen represents. Fear, stress, uncertainty, and anxiety are so draining when we’re dealing with them on a daily basis, exhausting when there’s no end in sight. And that’s where we are right now as a global community, facing the unknown as the pandemic continues. The rhythm of our daily routines can provide reassurance, if we’re paying attention to them, if we learn to appreciate how much effort it really takes to keep calm and carry on. So at the end of the day, take a moment to appreciate what you have and what you’ve managed, especially if it feels like not very much. These are testing times and we are all miraculous.

autism, Home, parenting

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

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

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

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

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

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

autism, Home, parenting

SEN and the art of fighting

The saying goes that one day you will look into the mirror and realise you’re turned into your mother. In my case I definitely skipped a generation. When I look in the mirror, it’s my Nana who looks back at me, only with much less vivacity than she ever had. Tired, stressed, defeated, a woman who has given up on herself, that’s what my reflection pronounced. It didn’t seem to matter, it wasn’t as if I was going anywhere anyway.

Then came the week of hell – technically probably Week of Hell 346 – and the devastating news that Lily was probably about to be expelled from college, one month into her course. After the initial shock and despondency had eased, I realised that Lily’s only chance was for us not to wait for the phone call bringing the final decision, but for me to insist on a meeting with the college head and advocate for her.

For someone browbeaten by stress, exhaustion and social anxiety, this was not a particularly welcome realisation. However, it was the only plan I could call up with – an emergency GP appointment on Monday morning to demand a referral to an autism/ADHD specialist with a view of trialling medication, followed by a trip to the city centre to speak to college.

Over coffee in a local cafe I sat and wrote down the gist of what I wanted to say, how Lily has never had any support for her autism and is then punished when she’s failed to manage. How badly her school let her down and how I didn’t realise until it was too late as I was fighting the abuse from Simon all that time. That Lily has suffered from that abuse and been left feeling angry and confused – and that Ivy has spoken of Lily and Simon having physical fights; her own father has modelled violence towards her. That she has a slow cognitive process and reacts before she can think, that she doesn’t seem to understand consequences or cause and effect. How her anxiety leads to a need to be in control at all times, and how threatened she would have felt by what her tutor was saying to her in front of everyone. That she deserves another chance, it’s not fair to expel her for messing up in one lesson when she’s been a good student until now and the problem was largely cause by a lack of support and understanding.

As I write, my own frustration grows. Listing Lily’s difficulties, it’s unbelievable that she has never had support. That for purely economic reasons, she’s been kicked to the kerb time and again, left to sink without the support she needs and then blamed for her behaviour when she’s not managed to conform to rules that she doesn’t understand or that create massive anxiety for her.

This has to stop. We’re running out of time.

It is beyond time that Lily started getting the support she’s always needed. And clearly, it’s going to be down to me to fight for it, even while I’m still having to battle Simon over child maintenance. On the way home I stand in the beauty aisle in Tesco Express, studying the hair dye. That evening Ivy smothers my head with it, while instructing me on the Curly Girl method. After I’ve washed it out, she nervously trims my hair, snipping each curl individually as the book prescribes. I keep reassuring her that no matter what she does, it can’t look any worse than it did, and after all I was made to cut Simon’s hair for years without any clue as to what I was doing.

I’m not a hairdresser per se, but I have used scissors and I do have hair, we joke, misquoting the pig from Bear in the Big Blue House. I finally find the makeup that’s stayed buried in the bottom of a packing box until now. This is my war paint. These are my battle stripes. I will not walk in defeated and beg, I will go in ready to be listened to.

autism, Home, parenting

Meltdown

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

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

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

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

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

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

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

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

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

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

Home, parenting

Of lies and money

So. With money running out and less than a third of the child maintenance being paid, the phone calls to CMS began. For each call you make to CMS, you will be on hold for over 20 minutes, guaranteed; I figure it’s deliberate, in the hope that some callers will give up and go away. They told me that Simon would be sent a letter about the missing payments, and would have “until the end of next week” to respond. “The end of next week” became a moveable feast, being cited for over a month while Simon failed to respond and the money still didn’t arrive. The amount owed crept up over £1600, my anxiety levels soaring with it.

Then the excuses started. Simon had apparently told the CMS in a phone call that he was no longer earning as much money. It says a lot that even now, I was prepared to give him the benefit of the doubt – perhaps he’d been made redundant, or had deliberately reduced his hours in order to free up more time for DIY on his new house. I stressed about what that might mean for us, what our payments would be reduced to, how we would manage. Yet the quiet voice of reason whispered in the back of my mind that if he was genuinely earning less money, the very first thing he would have done would be to contact CMS to reduce his payments. When I checked with CMS a month later, Simon hadn’t even put in an application to reduce his payments, never mind sent in proof – clearly this was another lie.

Next, a letter from CMS stating that they’d “been informed” that Lily was no longer in full time education and could I confirm this or send proof? Otherwise payments would be reduced. I called to let them know that Lily was attending a BTEC course which was classed as full-time. I knew immediately what must have happened; Simon had turned up in our new town the weekend before, taken Lily to dinner and asked her about her course. On finding out that she “only” attended three days a week, he’d assumed that this couldn’t possibly count as full time, and called the CMS to have his payments reduced. As he has no responsibility for the day-to-day lives of our children, he either didn’t realise that the BTEC still counted as full time, or he knew but didn’t care. It’s frustrating that instead of being happy for Lily, who is loving her music course, he’s tried to use her course as an excuse to pay less maintenance, turning it against her.

Normal reaction; I’m so glad you’re enjoying your course. Do you need anything else for it, any textbooks etc?

Abusive father; Tell me more about your course so I can try and use it against you.

Simon had not asked for our new address, nor had I offered it. Lily had talked to him only in terms of the nearest city, making sure not to give him the precise area. Yet he turned up here with Astrid, insisting to Lily that he meet her in our actual town, having managed to find out where we live without being told. It felt sickening, and took away the security that Ivy and I had been feeling, it’s all mind games and intimidation – see, we can find out where you live! But no doubt if you talked to him, he would still insist that I was the one stalking him… He spent less than 3 hours with Lily, but treated the occasion as a weekend away with Astrid, spending two nights in a hotel, meals out etc, while still claiming that he couldn’t afford to pay child maintenance.

Last week another call from CMS; now Simon was claiming that he retained shared care of Lily and had a court order to prove it. The court order was a 2017 relic from Simon trying to force Ivy into reinstating contact (and therefore not having to pay maintenance for her.) While I had been so careful to word the document in such a way as to make sure Ivy wouldn’t be forced into anything, it didn’t occur to me that I should ensure that Lily had a similar, flexible opt-out clause. In the Family Court you evidently need a fortune teller as much as a lawyer. Even though it was Simon’s choice to deviate from the court order, and Simon who had originally informed the CMS of his decision, he was now trying to claim that he had equal shared care of Lily.

At times I agonise over how this must seem to Lily. If it wasn’t bad enough that Simon effectively threw her out with a week’s notice, after having spent 10 months in court battling to force contact with Ivy. If it wasn’t bad enough that he dumped all of her belongings on the street outside her house, including even her bedlinen, making it clear she was no longer welcome. If it wasn’t bad enough that Simon then made Lily tell Ivy that he was happy for Ivy to move back in with him if she didn’t want to relocate – yet never made an offer for Lily to move back in… Now he was claiming she still lived with him for half the time, so that he could stop paying for her. To throw her out and then claim she was still there?

Even though Simon’s claims were ludicrous and outright lies, there is always the fear lingering beneath. What if they actually believe him? What if he’s managed to find a loophole and they have to uphold his claim, even though he’s not adhering to the court order? It’s no wonder I have an anxiety disorder, it’s been my constant companion these past five years. I waited over a week for the official letter to arrive to find out what the precise arguments were that Simon was using so that I’d know how to word my response, but when the letter finally got here it contained no information. Yet another call to CMS, another 20 minutes on hold.

“Yes, we get calls about this a lot,” the woman explained. “Unfortunately the letters are generated by the system, so they don’t have much information.” Then why don’t you change the letters? I wondered, given that it would save everybody more time if they just took five minutes to add a few details before sending it. If I hadn’t been told on an earlier call, I would have received the letter but have no idea what Simon was claiming. But yes, despite the fact that he saw Lily for 2 hours a month on average, and she hadn’t stayed overnight with him for almost 2 years, he was claiming that he retained equal shared care of her. Half term was rapidly approaching but with no invite for Lily to go and stay with him. It’s still difficult to believe that he could be making such an outrageous claim, that his lies have become this bold. It’s even harder to try and understand how he could do this while still apparently claiming that he is the innocent victim in all of this. But because he’s got away with it so far; lying to his solicitor, to his lawyer, to the judge, to social services, to school, to CAFCASS, to the police, never mind to me and the children, and no one has stopped it, he’s become further empowered. Because there has been no consequence for his lies, they’ve got worse.

“If you’re looking at my case on screen, you should be able to see that he gave you false information before,” I tell the woman. “He gave you false information in 2018 when he claimed that he retained equal care of Ivy, and you found in my favour. He’s given you false information this month, claiming he was earning less money, claiming that Lily was no longer in full time education. He’s lying now about this, Lily lives with me full time, he hardly sees her. It says on the letters you send out that if we send you false or misleading information then you’ll take further action, so I’m begging you, please take action. Because otherwise he’s going to keep doing this because there’s no consequence and it’s getting worse and worse. You’re failing to protect me and the kids, you’re allowing abuse to continue.”

Generally the staff at the CMS are very friendly and helpful, even if they have to stick to a fairly limited script. “I understand where you’re coming from,” is about as far as they’re allowed to go, rather than “Yes, we understand that he’s being a total bastard about this.” They have the power to take people to court, to seize driving licenses, to take payments directly from wages (although unbelievably, the receiving parent effectively pays a fine for this, losing 4% of the ongoing payments, even though it’s only possible to switch to direct collection if it’s been proven that the paying parent has been failing to pay.) Yet over £2 billion is owed in unpaid arrears, the vast majority of it owed by fathers to mothers. Because Simon paid up his arrears a couple of days before the deadline, the CMS wouldn’t switch our payments over to the Direct Collection service. The stress and anxiety he’d caused me simply don’t have a cost, nor would he be liable for any fines I’d accrued if I’d gone overdrawn or defaulted on a payment due to him not paying. What remains unsaid is the cost of all these lies, the fresh pain and confusion each lie causes; How can he do this to us? Do the kids mean nothing to him?

The realisation that it’s not over brings me crashing down again. That the abuse is set to continue, no matter what I do to free myself of it. That by taking the ultimate action in trying to free myself – relocating – all I’ve done is trigger a fresh cycle. Yet again the confusion over why is he doing this, how can he possibly think that this is okay? Part of the abuse endured several years of Simon and Astrid telling me to Get over it and to Move on – but it seems that they’re the ones who aren’t prepared to let me go.

A Year to Heal, Home, parenting

A fresh start

Despite the challenges of moving from the House in the Sky to the Tiny Terrace, I clung to the belief that it was a fresh start. With the divorce and court over, I could take as long as I needed to settle in and rebuild my life, create a new home for my kids. However the abuse didn’t stop; now that Simon was openly living with his new partner it ranked up a level, resulting in our youngest deciding she didn’t want to see him any more. Cue another court case as he attempted to force Ivy into maintaining contact, at which point it became clear that he would stop at nothing to destroy me.

The fresh start disappeared under the burden of legal documents, reports and lies that I was left defending myself against. Rather than creating a new home, I was struggling to survive. Boxes remained unpacked, furniture that didn’t fit up the narrow stairs stood mouldering outside on the patio. When I look back, I’m amazed I managed to get anything done at all, never mind setting up a home! After almost ten months of legal battles, it became clear that Simon was not going to get his way; Ivy could not be forced into seeing him. A month later, he kicked Lily out with only a week’s notice, insisting she came to live with me full time, her belongings dumped on the street outside our house.

The Tiny Terrace had never been intended for the three of us to live full time in. Less than half the size of the House in the Sky, no parking, and not on the school bus route; these were manageable compromises when I bought it in the belief that the kids would only be there for half of the time. It was the only property I’d seen that was remotely suitable while Simon was ramping up the pressure to get us out of the family home. One year on, that compromise had been stretched to its limits.

Single-parenting is hard, even harder when you’re living in fear that everything you do is being judged. Everything was on me, all of the time, spinning all of the plates single-handedly with the added fear that Simon would exact some form of overblown retribution if I stumbled. My own life had ceased to exist, I no longer worked nor socialised. I didn’t go out without the children, I lost touch with nearly all of my friends. When my own mental health challenges became unbearable, it was clear that things needed to change; move now, or stay put for at least another two years until Ivy had finished her GCSEs, knowing that our struggles were set to continue. It was time to move, and this time I would make sure that it really was a fresh start for all of us.

Although we would be bringing some of our challenges with us – autism doesn’t go away – by relocating we’d be leaving some of our problems behind. No more panic attacks in the supermarket, scared that I’d bump into Simon or Astrid. Being able to attend local events without anxiously scanning the crowd. Simon not knowing our new address meant he couldn’t spy on my home. There were positives too; a school for Ivy that had better pastoral care and was within walking distance. The chance for Lily to attend her dream college course. My family within an hour’s drive. Hopefully the fresh start would also give me the chance to not so much rebuild but create a new life for myself and begin to put the past behind me. It felt like the end of a long struggle, and I was certain that the abuse would be consigned to history, there was simply nothing else that Simon could do to me now.

Or so I thought.

Money was tight, especially as we squeezed in a last minute holiday before the move, our first in years and an important symbol marking the end of one way of life, the start of another. I overstretched myself as the first house fell through, and ended up having to borrow money from my parents to pay the removals firm. I started keeping a money diary, but as I was in the process of switching banks it was more difficult to keep track of my finances; all I knew was that there wasn’t enough money in my account and I blamed myself for overspending. However, the new banking app on my phone soon revealed the issue – Simon had not been paying the full amount of maintenance. When the statements from my old bank arrived, it showed he owed me over £1500 – no wonder I’d been struggling. The next payment date rolled around, and less than half of the set amount was paid. Simon had evidently decided to pay what he saw fit, rather than the legally-mandated figure.

Financial abuse is one of the earliest markers of domestic abuse, and withholding child maintenance falls into this category. It’s no coincidence that this happened just as I moved away from Simon – this was retaliation, an attempt to regain the control that he had lost. For the victim, it creates constant anxiety and a high level of stress – money is an inescapable reality. It has meant having to constantly check my bank balance, buying only the bare minimum, putting off the purchases that we need for the new house. Each time that I fretted over money, Simon was forefront in my mind as a constant, intrusive thought. Of course, there was no warning that the money wouldn’t be paid into my account, no time to readjust or budget for the difference. “Sorry, my ex hasn’t paid the child maintenance” isn’t an excuse that goes down well with utility companies or the supermarket cashier. If I was overdrawn, I would have to pay charges, even though it was Simon’s fault – even if I managed to get him to pay the arrears, there wouldn’t be any financial penalty for him, no compensation for the difficulties or fines that he had caused. To have this happen right when my expenditure was necessarily at its greatest – moving house – was cynical and deliberate. Depressingly, our fresh start rapidly deteriorated into more of the same.

Simon doesn’t know how much money I have coming in or going out, what financial commitments I have, whether I’ll be plunged into debt without that money. He seems not to care about the impact it has on our children, from missing out on opportunities, school trips, clubs etc. to struggling to cover the cost of the basics such as clothes, transport to school and college, even what food we eat, as well as the kids worrying about money and feeling stressed. Such issues are the permanent price of poverty; what’s frustrating is when you are plunged into poverty purely because your ex is deliberately not fulfilling his legal obligations to his children. Getting a job isn’t so easy for a single mother with a large career gap and a kid with special needs – Lily had an epileptic seizure at college last week, necessitating a panicked 90 minute drive to get to her, then a three hour stint in A&E, not something that fits in well with a 9-5 job.

The hidden cost of financial abuse is the impact it has on your ability to parent – the children have a mother who is constantly anxious and stressed rather than happy and fully present with them. The fresh start we’d hoped for, the chance to make sure that the last years of their childhood were happy, has been sabotaged yet again by Simon’s abuse. By attempting to punish and control me, he’s hurt his children. And that for me is the most painful part, having to accept that the love he once had for his kids has been suffocated by the hate he now holds for me. It’s hard to reconcile the husband and father he once was to the monster he has become. Financially I’m losing out – but ultimately, he has lost so much more.

Home

Moving

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

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

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