abuse, autism, parenting

What we did during Lockdown: vomit, ambulances and the CMS.

I’m on my hands and knees picking up broken glass and chunks of vomit from Lily’s carpet, while she yells to get out of her room. Seconds later she’s clutching her head, screaming in pain, demanding I cure her post-seizure headache immediately. Less than five minutes ago she was fitting, smashing a lamp as she fell to the floor, showering slivers of broken glass from the huge decorative (and expensive) lightbulb. There is a real danger of her choking to death on the partially-chewed food in her mouth, so myself and Ivy struggle to roll her into the recovery position as soon as we can, while a semi-conscious Lily fights us off. Despite being urged to stay calm and lie still, she suddenly springs up, banging her head on her desk in the process. Next minute she climbs up the ladder to her loft bed, while Ivy and I try to get through to her that there is broken glass everywhere so please just stay still.

I deal with the chaos, picking up all the mess from Lily’s bedroom floor, shaking out clothes from the window to make sure there’s no glass in them before putting them in the wash, heading downstairs to empty the dustpan. Lily appears in the kitchen, despite having been told to stay in bed, then suddenly swears loudly and yells for a bowl, which I manage to grab and hand over before she starts vomiting again. Ivy, who’s been helping brilliantly until this point, turns grey and runs upstairs to the bathroom, crying and retching, the sight of a vomiting sibling proving too much for her OCD.

Having made sure they’re both okay, and dealt with a second major vomiting incident from Lily after that, I’m on hold to NHS 111 on the landline while simultaneously trying to reach my GP on the mobile. I need advice about whether Lily’s vomiting and severe headache are post-seizure symptoms or signs of concussion, given that she whacked her head on her guitar amp; an ambulance ends up being sent to assess her. Of course, Lily initially refuses to be seen until I manage to explain that if she had concussion she might end up with brain damage. I have to then persuade the 111 operator that the paramedics would be able to safely assess her and not be turned away at the door. Lily then refuses to let the paramedics take her to hospital for observation, so observation becomes my job too. She blames Coronavirus for her refusal, but I know from past experience that she would have refused to go anyway.

This is the third seizure in 6 months due to Lily not taking her medication. ADHD-related executive dysfunction means that she basically can’t be bothered, even though I’ve put the tablets and a glass in her room. Or she forgets. Or… I don’t even know, because when I ask her if she’s taken her meds she always tells me she has. If you think that I can stand over my 17 year old twice daily and force her to take her meds, you clearly haven’t heard about Pathological Demand Avoidance. She’s now agreed to take them at breakfast and dinner in the kitchen, although I’m still reminding her twice a day, along with nagging her about her screen time, her caffeine intake, the amount of sleep she’s getting. I also have to check how much medication she has left, otherwise she’d run out and not let me know – it’s taking over a week to get a repeat prescription at the moment, and there’s only so many times you can explain to the GP and pharmacist that it’s an emergency before it gets hideously embarrassing. I have to keep track of when Lily has a shower, and remind her that she needs to wash more frequently than once every three weeks. Even with chunks of vom in her hair, it’s the next day before I can persuade her that she really does need to shower now.

Today Lily swore at Ivy with a word I found completely unacceptable, then argued with me over and over, becoming more and more rude and defiant and aggressive by the minute, not listening, talking over me, refusing to take no for an answer. No matter how many warnings she’s given, no matter how many times she’s told she needs to stop now and go to her room – or just leave me alone – she carries on until I explode and yell at her. And no, I shouldn’t yell – but I defy you to let a mosquito jump up and down on your arm repeatedly biting you without wanting to swat it at some point, which is the closest analogy I can think of.

Shortly afterwards the response I’ve been waiting for from the Child Maintenance Service arrives. It’s a short, badly worded letter, that basically only re-states their position that they are unable to revise their decision and I need to appeal to a tribunal. I fire off a curt response, including copies of the letters they’ve previously sent me with the relevant points highlighted. Look. You told me that my ex would have to go to tribunal to appeal the decision you made in my favour. Then you revised that decision without warning, based on false and misleading evidence he submitted. Now that I’m trying to appeal you’re telling me you’re not allowed to revise a decision, I have to go to tribunal. But you’ve already revised your decision on appeal! Kindly pick a policy and stick to it! I word it slightly more professionally than this and miraculously manage to refrain from swearing at them. I point out that I have full time care of both children, that both children are legally classed as remaining in full time education, and that Child Benefit continues to be paid for both children despite Simon’s attempts to sabotage it, so please explain why you’re opting to breach your own criteria for payment.

I have fought 7 battles over child maintenance in a little over 8 months. I’m exhausted, angry, demoralised. I’ve wasted hours and hours of my time writing letters, waiting to speak to an advisor at CMS on the phone – always at least 25 minutes on hold, registering and deregistering for their stupid online system, appealing to Child Benefits to undo the damage that Simon has maliciously caused, queuing outside the Post Office, or finding myself too angry and fretful to do anything useful. I’m getting half of what I should be paid, with further deductions taken off to pay Simon back for an “overpayment” that technically shouldn’t exist. What makes it worse is knowing that as I square up to fight this battle, there’ll be another one waiting around the corner, and another, and another, because the CMS refuse to take any action against Simon, even when it’s been proved that he’s lying to them. If I win the tribunal, he’ll find something else to appeal against, because nobody is stopping him. My biggest worry is that now he thinks he’s won by not having to pay for Lily, he’ll start looking for ways he can get out of paying for Ivy too. Well hello there, poverty.

I still don’t understand how there can be any loophole that allows a parent to throw their child out and then refuse to pay maintenance for them. I don’t understand how an EHCP isn’t automatic when your child has a diagnosis (or three!) of a recognised disability. I think Child Benefit should continue to be paid until 18 for autistic/ADHD teenagers whether or not they’re in full time education, given the difficulties of finding suitable post-16 provision and of getting adequate support – it’s simply not fair to classify them in the same way as a neurotypical teen who doesn’t share their difficulties. Similarly I think child maintenance should be paid for a disabled child for as long as that child remains in your care, given the economic impact of being a full time carer. Having children continues to negatively impact a woman’s ability to earn – more so if any time is spent as a full time Mum, even more so if the child has a disability. But to change any of this would mean having to campaign to change the law – change several laws – and I’m too bloody tired to think about it. And so we continue on, all separately fighting similar battles; single mothers being screwed over by ex-partners, parents of autistic kids battling to get their educational needs met, politicians not seeming to care how hard it’s making our lives.

So this is what I’ve been doing during Lockdown, rather than joining in with Joe Wicks, baking cupcakes or writing a book. As I’m sluicing bowls of vomit down the toilet, picking up chunks of it from Lily’s carpet, trying to make sure no one slices themselves open on smashed light bulbs, waiting on hold to the NHS and wondering whether it’s safe to have a paramedic in our home during the pandemic, or trying to explain for the umpteenth time that it’s really not okay to call your sister that and no, I don’t want an argument about it, and coping with the realisation that Lily could well have died if I hadn’t been there, I’m very very aware that Simon isn’t doing any of this. So why should I be punished financially for being the one who does?

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.

A Year to Heal, abuse, Creating a life worth living, parenting

The Big Shift; reclaiming power after abuse

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Having no contact with my Ex for about a year had helped me to heal… and now he was emailing again. His name suddenly appearing on my phone made me feel sick – I couldn’t bear the thought of being dragged back into the lies, taunts, insults, and gaslighting. I’d moved on from all that, hadn’t I?

As anxiety swept through me, I realised what I was really scared of. Losing my power. For a while now I’d been aware that I wasn’t standing in my power – others had even pointed it out to me. Yeah, thanks. So reclaiming my power had been a huge issue – and I wasn’t about to let my Ex steal it away again. That was what was at stake now.

Time for a quick ritual, candles lit, mantra created. Chanting over and over I call back my power, I am grounded in power, they have no power over me, not now, not ever, all fears begone! See, it doesn’t have to be poetry, it just has to work for you. Chanting until I felt the power rising through me, solid in my core, hurling a final begone! with such force I could feel it leaving my body.

I replied to him in my own time – I have learned a lot about dealing with an abusive Ex, and the number one rule is to never reply immediately, take your time and think it over. I said what I wanted to say, making sure there was nothing that could be interpreted as an insult or provocation. Having sent it, I left it at that. When he emailed again, with the usual barrage of insults – telling me I was immature, unreasonable, wrong about everything – I simply didn’t respond. Lesson two: only respond when there is a direct factual need to do so, eg to confirm a time/place to pick up the kids etc.

He has emailed several times now, and my power remains intact. He has only riled me once, when he (illegally) threatened to withhold child maintenance unless I gave him the information he wanted (information he does not legally require.) My response was strongly worded, but didn’t descend into insults and name-calling. For the most part, I’m ignoring him unless there’s a factual question that I have to respond to; this isn’t about playing games or giving him the silent treatment – if you have been a victim of narcissistic/sociopathic abuse then going no contact is a life-saver. Once upon a time I would have spent ages writing heartfelt emails pointing out all the lies, explaining yet again what actually happened, begging him to act with decency. No more.

You can’t reason with someone who is determined to be unreasonable.

I’m not going to waste my time on him any more.

I’ve been fighting a 6 month battle over child maintenance in which I’ve had to deal with his constant flow of appeals to the CMS as to why he shouldn’t have to pay maintenance, each one then followed by a mandatory reconsideration. I’ve tried to point out that he doesn’t have the right to throw Lily out, forcing me to look after her full time (against the terms of the court order) and then refuse to pay maintenance. I’ve also offered to drive Lily down to his place every weekend so that he can resume the “equal shared care” that he’s claimed to the CMS that he wants. Turns out he doesn’t want it after all! Now this week I’ve been informed that he’s taking me to a tribunal – effectively the third time he’s dragged me through the courts.

Yes, I’m angry. Furious. Frustrated. Scared. Above all, I resent having to spend several months preparing and worrying over it. But I am not going to let him steal my power. The chant has brought a lasting shift. And with it, the desire for change. I’m so tired of the pattern I’ve been living – that every time I get back on my feet I get knocked down again. I don’t know how to break it. Yet I’m determined to make that change. And so there are changes coming to this space too… I want to shift more to the positive, focusing on what works rather than merely charting the difficulties I’m facing. I’m tired of surviving. It’s time to thrive.