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Calm During Coronavirus

At times I have to question whether my brain and I are playing for the same team. Take Lockdown; as if looking after and home educating two high-maintenance teenagers wasn’t going to be enough to deal with, my brain decided that what I really needed to do was set myself a challenge. Why not write and publish a book on Kindle during Lockdown? And for bonus points, make it Covid19-related so that it’s incredibly time-sensitive? Yes, that’s an entirely sensible thing to do!

Well, I did it. Slightly behind schedule given the drama we’ve had around the threat of bailiffs, ambulances being called and yet another battle over Child Maintenance, but I did it. Calm During Corona: Coping with Anxiety During Lockdown is now available on the Kindle store.

I had to fight the demons telling me that it was pointless, that Lockdown was nearly over and it was too late to go ahead. It was important to me to get it finished and out there, even if no one buys a copy. This time around, it’s about the doing of it, of going ahead no matter what. Of course, the hope is that it reaches someone who needs it, someone who isn’t used to dealing with anxiety and feels like they’re struggling to cope. The book is a blend of reassurance and practical tips and techniques for coping with anxiety. I’ve learned so much about living with stress and anxiety over the last few years, it felt like a good time for passing on some of that knowledge.

The difference between having yet another unfinished project cluttering up your laptop, and having something finished and out there can be just a few hours – yet it’s immense and profound. Completion is an incredibly satisfying feeling, as opposed to the niggle of coulda woulda shoulda over things we never quite got round to doing. I’ve also hemmed the skirt of the dress I’ve been making – and I’m wearing it as I type this. I’m thinking of digging out a few more UFO’s (UnFinished Objects, in crafting terms!) and getting them done, for the pure satisfaction of it. Completion also seems to clear a bit of mental space – I guess every unfinished project still has a pocket of brain devoted to it until it’s either done or thrown away for good.

So – it’s never too late. Dust it off, whatever it is, and get it done. And if you’re looking for some tips on handling your anxiety while the pandemic continues, I highly recommend this book. (Follow this link for Amazon.com)

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, parenting

How to reassure your autistic or anxious child about Coronavirus

If Ivy is worried about something she’ll either tell me about it or become anxious and withdrawn to the point where I’ll ask her what is wrong. Lily however will continue on in her rambunctious way, never admitting anything is wrong but becoming angrier, more defiant, more irritable and generally biting my head off – as if someone has cranked the level up to 11. Although as a family we don’t tend to watch the TV news, it’s hard to avoid all the headlines about Covid19 – and the rows of empty shelves as we did our weekly shop were a glaring reminder of the situation. In the car on the way home Lily quietly asked me if we were all going to die, and insisted that I tell her the truth, not just try to make her feel better about it.

It’s hard enough for adults to trawl through the innumerable sources of information out there and decide what’s truth and what is clickbaiting hysteria, but for children and teenagers it’s almost impossible. Faced with ever-rising figures about the numbers infected and the death toll, everyone is worried and uncertain – for anyone suffering with anxiety (and autism is an anxiety-related disorder) the consequences are unbearable. Our children have simply never experienced anything like this, and to be honest even as an adult who has lived through the swine and bird flu phenomena, I’ve never experienced anything like this either. No one knows what is going to happen nor what the long-term consequences will be. Personally I’m hoping that as our governments must surely be forced to work together, this sudden realisation that we are one global community might be harnessed in order to combat the crisis. Who knows?

In the meantime, it’s left to us as parents to reassure our children – many of whom are already suffering from OCD and heightened anxiety. What on earth can we say when we don’t know the answers, and when they’re witnessing empty shops, travel bans and talk of quarantine and school closures (at the time of writing schools in the UK are still open, but this may inevitably change?)

Please note – these are merely suggestions, and are aimed purely at providing reassurance rather than official medical advice; following these will not reduce the chances of you or your children catching Covid19. This is aimed only at reducing mental/emotional distress in the meantime. Also – the situation is constantly developing, so forgive me if my take on things becomes rapidly out of date!

  • Reassure them that not everyone will catch the virus, and of those who do catch it the vast majority will be ill for a short while with flu but won’t die. Some people will have symptoms that are so mild they don’t know they’ve got it. Serious cases and deaths have been with people who have pre-existing medical problems. Young, healthy people are not at high risk of developing complications or dying – it’s important that your child realises this, otherwise they might believe that they and everyone they love will die.
  • With older kids explain that it’s a form of flu, that there are deaths every year anyway from flu (which is why the flu jab is available) and as it’s a new form of the illness nobody has immunity to it, which is why it’s become such a problem. The main issue isn’t that everyone is going to die, it’s that it will be difficult to keep things running normally if too many people get sick at the same time. While we obviously want to prevent sickness and death, a lot of the measures being put in place are about trying to slow the virus down.
  • Explain what steps you’re taking to keep everybody safe, eg. handwashing, sanitisers, reducing social contact etc. If you have loved ones who are more at risk, explain what extra steps they are taking.
  • If someone in your household has a compromised immune system, print or create a notice to post in your front window asking deliveries etc to be left in the porch – these are available online.
  • Children may feel more secure if they are able to write House Rules to pin up near your front door or window, eg Please wash hands as soon as you return home.
  • Explain what will happen if any of you get ill and draw up a Plan of Action to reassure them. It’s a good idea to plan for this anyway! Who will look after the ill person, what meals have you got readily available, where can you get food deliveries etc? What extra steps can you take to try and prevent others in the house from also falling ill if possible? What happens if both (or single) parents get ill at the same time? You will likely find that your child has specific worries that they want you to address, for example they might be worried that they don’t know how to call 999, or they don’t know Grandma’s phone number if you get sick.
  • If you have stocked up on food, loo rolls etc, let your anxious child see the stash in order to alleviate their fears. They might feel less anxious if given more agency, so have them create an inventory of what you’ve got in stock.
  • If you haven’t got hand sanitiser, try putting together a home-made version with essential oils (search for recipe suggestions online) – this is unlikely to provide realistic protection (although several essential oils can have anti-bacterial or sanitising properties), but again it’s about providing reassurance to your child.
  • Focus on positive and practical news stories and share these with your child. eg. Local volunteer groups springing up to help fetch supplies for vulnerable people, or that firms such as Rolls Royce can be used to manufacture extra medical equipment such as ventilators. As Mr Rogers said, always look for the helpers.
  • DO NOT WATCH THE NEWS WITH YOUR CHILDREN PRESENT. Similarly, do not have conversations about it when they are in earshot.
  • Although most kids might be thrilled at the thought of school closing, anxious children might be worried about falling behind, particularly if they are approaching important exams, secondary transition etc. Show them what measures schools are taking, that GCSE’s are likely to be moved back to September in the UK, how lessons might be set online, websites such as Khan Academy, BBC Bitesize, MyMaths etc, and reassure them that you will help them to manage their education if school is shut. You could help them look at how children get an education in remote areas such as the Australian Outback, or investigate forms of home education – not going to school has always been a reality for some children and so there’s no need to panic.
  • Friendships are also important so discuss ways that they can stay in touch with their friends if you or they need to self isolate, or if school is closed – this is perhaps more of an issue for younger kids who might not have mobile phones/social media.
  • Older children might appreciate relevant updates, particularly if it shows that new measures are being taken to control this. Keep these practical and positive – either tell them about it personally or show them an internet article/video, as long as the content is positive. Avoid just handing over your phone/tablet etc, share it with them and then put it away so that they don’t start clicking on negative links.
  • Focus on the science; there are good scientific reasons behind handwashing for example (the soap can kill the virus by destroying part of its coating, for a very oversimplified explanation!) Address specific worries by investigating the reality, so if your child is worried that the shops will run out of food you could look at how supply chains work, or how rationing would work – how do governments make sure people get fed after a natural disaster, for example?
  • Try to provide distraction, eg watching a funny movie together, or silly YouTube videos. Life goes on.
  • Make a list of ways you will have fun and keep yourselves amused if a quarantine or self-isolation is imposed. Let your child have as much input as possible, coming up with fun suggestions, or perhaps they could make a list of all the board games or movies you own. Even making a list of their own toys, books and games might distract them.
  • Prepare a Self-Isolation/Quarantine box (do this quickly before further restrictions are put in place!) – allow everyone to choose a new magazine or book, a small treat etc. This all goes into a box that’s put away and only brought out if you have to self-isolate, or if you get sick, or when the whole shebang is over and done with. This way your child has something to look forward to and it can stop them dreading what might happen!
  • Self isolation doesn’t mean you can’t leave the house (although quarantine restrictions can vary so check if this is the case) – it means avoiding public transport, going to work, social gatherings etc. You are still allowed to go for walks, or ride your bikes! Fresh air and exercise tend to do everyone some good, and you are not putting yourself or others at risk if you’re rambling through the woods and fields. Reassure your child that they will still be able to leave the house and go outside, walk the dog – but they wouldn’t be allowed to visit friends or go to a cafe, library etc.
  • I followed these instructions to sew a face mask for one of Lily’s cosplay outfits. It is unlikely to reduce her risk of infection, but she’s happily wearing it when she goes out, particularly as she has to use public transport to get to college.
  • Allowing your anxious child to wear disposable gloves might reassure them (these may be available at DIY stores if pharmacists, supermarkets etc have sold out) – I’m increasingly seeing receptionists etc wearing them. If they’re young enough, any kind of glove might help to soothe them, although be prepared for an insistence that they get washed every time.
  • Ask older children what measures they think need to be taken, whether for you as a family, or what they’d do if they were in government – this can help them to start thinking practically and give them a sense of control, rather than panicking.

Generally there’s a need to provide anxious children with a sense of control over a situation that is way beyond anyone’s ability to control it. Younger children can be more easily reassured with the equivalent of Dumbo’s Magic Feather – a squirt of hand sanitiser or a face mask. Older teenagers are unlikely to be as easily convinced, and won’t trust you if they think you’re lying. It’s okay to admit uncertainty, but do your best to focus on the positive actions that are being taken. Remind older children that thousands of children face danger and uncertainty every single day; in Third World countries without clean water, in war zones, in refugee camps – sometimes it can help to count our blessings and remember that we have safe houses, clean water and advanced medical care available. Making a ritual of everyone saying something that they are thankful for before eating dinner, or at bedtime, can help us all to focus on the positive.

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

The Big Shift; reclaiming power after abuse

untitled design

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.

autism, parenting

The Carer’s Log – a guide for parents

It says a lot about the state of my life that last week’s crisis isn’t even old news before the next issue is rolling in. The battle with Simon over child maintenance was instantly relegated to the sidelines when Lily was suddenly expelled from college, so much so that I had to remind myself to post off my statement and evidence in time to the CMS, caught up as I was in the new business of trying to find another college placement for Lily and fighting for the SEN support she so obviously needs. Meanwhile life continues, there’s no intermission doled out to hand you the space and time you need to handle whatever’s happening. So inbetween calls to local advisory services and colleges, I received an unexpected call from the London hospital that handles Lily’s hormone blockers for her gender issues. We’d already received an appointment for the previous week, which was then cancelled and changed to a phone call when I discovered the train fare would cost us over £300, and all because the clinic had forgotten to refer us to a more local service. But now the nurse was saying that our GP was apparently refusing to prescribe or administer the injection Lily receives every 10 weeks, so our only option was to travel down to the clinic to receive it alongside a final health check before they referred us to local services. With less than a week’s notice I was now left arranging travel – which ended up in an overnight stay as it was still cheaper to catch an off peak train the day before and stay overnight than it would have been to buy a peak ticket on the day of the appointment.

Given it was half term and Ivy was going off to stay with a friend, it seemed like it might be fun to spend a couple of days in London together with Lily. And, in the event, there were moments of fun. Except, that this was Lily, and so none of it can ever be straightforward. From the stress of trying to get her up, dressed, and out of the house on time for the train, to the meltdown on the train because there were no seats, to the tantrum when she inexplicably decided that I should buy her a full length leather coat right now, to absent-mindedly leaving her phone behind in the hospital toilets followed by a panic attack/meltdown until it was handed back to us, to giving me hell because we’d been sent up to the paediatric ward for her jab and Lily wanted it made clear that she wasn’t a child any more, to refusing to cooperate when the nurse wanted to measure her shoulders and hips as she’d not had to do it previously and she “didn’t trust it,” to her outrage at missing Halloween and how I never should have arranged the appointment in the first place (It wasn’t me, Lily, it was the hospital and this was the only day they could fit you in, otherwise you couldn’t have your blockers)… oh dear god. By the time we got home I was utterly exhausted – only to discover that Lily’s bedroom window was wide open, along with the heart-stopping fear that we’d been burgled. Thankfully, we hadn’t. But, I decided, I could be forgiven for choosing never to leave the the house ever again, particularly not with Lily in tow.

It’s hard, it’s so hard because this is what autism looks like – and for the most part it looks like bloody horrible behaviour rather than a recognisable disability. It’s hard not to get sucked in, not to get angry or frustrated by it. If Lily could do better, she would; that’s the conclusion I have to come to when her behaviour gets her thrown off the college course she absolutely loved. She wouldn’t have chosen to be expelled, she just can’t control the way she behaves when she’s anxious. And being autistic means that she’s anxious a lot, the world is a very overwhelming place. To make it worse, out in public most of the blame is put on me as her mother. I’ve obviously just raised her wrong, there’s still precious little understanding around autism and ADHD.

Recently I started keeping a Carer’s Log. A simple diary outlining what I’ve done that day that relates to handling Lily’s autism/ADHD and epilepsy whether it’s phone calls to arrange appointments, sorting out paperwork, or having to give her reminders to help her manage her time, or take her meds, or the time spent handling a meltdown or trying to adjust her behaviour. I’m not sure why I started, possibly a glimpse of intuition that this might become important in future, particularly for dealing with PIP/Carers Allowance claims. It’s too easy to feel crushed under the weight of right-wing rhetoric that labels disabled people as scroungers, to start feeling guilty for claiming benefits when the reality is there would be no way of coping otherwise. It’s only been a couple of weeks since I started, and already the Carer’s Log has been an eye opener. It’s too easy to overlook how much you’re actually doing as a carer, over and above what you’d be doing as a parent for a child without SEN.

How to keep a Carer’s Log

  • Decide on the format that’s going to work best for you, whether to write in a dedicated journal, or keep a document on your phone/tablet/laptop. It’s crucial that it’s easy for you to update on a daily basis, otherwise you’ll keep putting it off and will end up forgetting a lot of the detail.
  • Decide what time is best for updating your log, I recommend doing it in the evening so that the day’s events are fresh in your mind, however you might want to avoid using a screen device close to bedtime.
  • Make sure you record directly into your log rather than keeping random notes all over the place that you’re planning on updating into the log at a later time. Inevitably, you won’t get round to it, or will lose half of them.
  • Keep this separate from any records/files that you’re keeping about your child’s condition; I have a large file containing all of Lily’s medical history, educational records etc that I frequently refer to as needed. My Carer’s Log is recorded separately, not mixed into the rest of her records.
  • Update the log on a daily basis, even if you’re logging “Nothing to report” for the day, just to get you into the habit of doing it. However, I’ve not yet had a “nothing to report” day, there’s always something!
  • Absolutely everything connected to your child’s condition should be recorded, such as calling to make appointments for them, driving to meetings with school, time spent researching aspects of their condition eg recently I’ve spent a lot of time online looking for information about supplements and diet for ADHD. It’s easy to otherwise overlook these things and only record the time you spend directly dealing with your child’s issues. Even the fact that I usually have to send multiple texts to Lily to remind her to come home on time after youth group gets recorded!
  • If your child has toilet issues, these should also be recorded.
  • Do you spent days and days trying to persuade your autistic kid to take a shower? Make a note of when you started asking, and how long it is before they actually take a shower – this can be two weeks in Lily’s case! It also acts as a reminder as to just how long it was since they’ve bathed, rather than it being a vague thought in the back of your mind that it might be about time to chase them into the bathroom!
  • If your child takes medication or supplements relating to their condition, list these at the start along with a brief description of what’s involved; you can then write “gave them their meds” or similar on a daily basis rather than writing it out from scratch each time. But don’t forget to add in these details about meds, they’re obviously an important aspect of your child’s health but one that’s easily forgotten in a daily log as they’re so routine!
  • There are no set rules for format etc, so you are free to choose your own style, whether you prefer writing in bullet points or being more descriptive. You might need a mix-n-match style, using bullet points to document routine items such as medication or physical therapy, followed by a descriptive paragraph to record how the day went.
  • Try to make sure your Carer’s Log won’t be read by your child – keep it somewhere they won’t think to look, or give it a very boring title if it’s a computer file. For this reason, be careful about the language you use – it’s simply a record, not a judgement about your child’s issues and behaviour.
  • If you’ve had a particularly trying or exhausting day due to your child’s difficulties, you might want to add this in, eg “Today was very challenging.” You don’t need to go off on a three page rant, but it can help to record what happened, and ideas of how to prevent it in future.
  • You can also record things that worked, or ideas that you want to try in future.
  • It can also help to add in photographs- for example the horrendous pile of rubbish I recently unearthed from beneath Lily’s desk! If your child has a habit of dressing in unsuitable clothing due to autism, a picture can be a good idea before you get them changed. This can act as evidence during a PIP interview.
  • Educational struggles are part of your child’s condition, so list these are they occur, for example having to attend meetings at school because of their “behaviour,” applying for an EHCP, or even the ways in which you have to intervene to keep your child calm while they’re getting frustrated due to homework. Yes, all kids get frustrated with homework at times, but most kids won’t smash up the computer or punch their little sister as a result… which is why you’re constantly on the lookout for your child’s warning signs and intervening as necessary.

A Carer’s Log can help you to feel validated in your role as your child’s Carer – a role which demands you go above and beyond the normal role of parent, in a society that constantly devalues both your and your child’s experience. It can act as a valuable record and evidence that you can refer back to when dealing with authorities, such as applying for PIP or an EHCP. Hopefully too it will allow you to treat yourself with more compassion if you’re dealing with the self esteem issues that seem to inevitably arrive when you are struggling with a child whom everyone labels as difficult. The Carer’s Log makes it apparent just how hard you’re working to help your child manage in daily life. Respect.

autism, parenting

The Big Day (part one)

The Big Day. I wake at 5.30, lie in bed with my mind racing until I give up and turn on the Calm app for my daily meditation. It’s so early that the cats don’t even jump off the bed to demand breakfast. I’m at the GP’s surgery with Lily before the receptionists are, the first in the queue for an emergency appointment. We’re told to come back at 8.50, and end up killing time in the nearest cafe, where a woman inexplicably dressed up as the Queen of Hearts makes us tea and an Americano, before disappearing into the back to handle her deliveries. The Meat Man is coming.

At the doctor’s, Lily wants me to do the talking. I explain the difficulties that she’s having, how her aggression has got out of control, and that we now want to try ADHD medication. The doctor turns to Lily.

“So now that Mum’s said everything she wants to say, how do you feel about all of this?”

Inwardly, I groan. Here we go again.

I can already tell from the doctor’s demeanour what I can expect. Oh yes, she’s friendly and acting like she’s here to help, but I’ve seen all of this before. Yet again, I’m going to be written off as a pushy, neurotic mother. For once Lily manages to speak up, explaining that she wants to try medication to try and help control her anger. The GP explains that she’s not going to send us home with any pills today, but she’ll give us a referral to the Child and Adolescent Mental Health service, that should be our first step.

I try to make it clear that this really isn’t our first step, it’s our last resort. I’ve been fighting for support for Lily for over 11 years now, and got nowhere. She’s never had the help she needs for her autism or ADHD. We’ve done CAMHS, we’ve done CYPS, we’ve done Family Therapy, we’ve done Early Bird, we’ve done art therapy and play therapy, I’ve done the two different parenting courses that they insisted on sending us on, I’ve paid privately to attend workshops on autism and challenging behaviour, even a Non Violent Communication weekend. I’ve read countless books and websites to help understand her difficulties and find better coping techniques. It’s obvious to me that Lily has additional problems; Pathological Demand Avoidance and/or Oppositional Defiance Disorder, neither of which can be treated by conventional parenting/discipline techniques, nor by talking therapies. Only, I’m not allowed to insist that these diagnoses are taken into account, because I’m her mother and not a medical professional, so if I mention this it’s another strike for the Neurotic Mother award. Of course most medical professionals won’t even recognise these as real conditions and prefer to blame the mother’s parenting style, even when you have other kids who are miraculously unaffected by your alleged poor parenting techniques. Whatever I try, it’s Catch 22. I have effectively been sitting in the GP’s office for 11 years now. This is not the first step, this is we’ve run out of options, we’ve tried everything except ADHD medication and it’s now time to give it a go.

The newspapers would have you believe that doctors were handling out Ritalin to kids like sweeties at Halloween. Yet we’ve never been offered medication, nor have I ever previously asked for it. Lily has threatened me with a knife, was suspended from school for being aggressive towards a staff member, as well as incidents with other kids for which she spent time in Isolation, and is now facing expulsion from college for being aggressive towards a tutor, including throwing a chair in class. When her anxiety is out of control, she responds with aggression. The reality is that she can’t help it; this is a neurochemical reaction caused by a diagnosable condition. No amount of talking therapy or parenting courses are going to change that. But medication might stand a chance.

I am so tired of being fobbed off by professionals. I am so tired of being treated like I’m neurotic every time I try to get Lily the support she needs. Because this isn’t actually about autism or ADHD, it’s about money. Lily wasn’t given the support she needed at school because of the costs involved. In order for her to be given a statement/EHCP, the school would have to demonstrate that they had spent £6000 on supporting her needs. Faced with ongoing budget cuts they clearly weren’t going to. I tried privately to get her an EHCP and got through to the final stage, meaning that the Educational Psychologist had identified that she did have a special educational need – but she was turned down because she’s been offered a college place. As a parent, you want to scream at that point – the issue isn’t her getting a college place, I managed that for her, but being able to stay in college. One month in, and that’s fallen apart. Oh, but here’s the kicker – the college only has places for 21 students with an EHCP, which has already been reached, so if Lily had been granted it, and been promised the support she needed, she wouldn’t have then been given a place at the college. In the meantime, the college has no budget to provide for her needs.

This is the reality for any parent of a child with SEN; it’s down to money. It’s not about their autism, their ADHD, it’s down to a decade of Tory Party cuts. If Lily is expelled, she will be classed as NEET – not in employment, education or training. I’m then punished financially for that, by having child benefit stopped, and Simon can pay less maintenance for her. So the system that has failed to provide Lily with the support she needs to remain in education – due to economic cutbacks that have benefitted wealthy Tory supporters – then punishes me financially for its own failings. Smashing, innit?

I have no choice but to smile sweetly and accept the CAMHS referral, although I pointedly ask how long the waiting list is likely to be. It could be six months, even a year, and we need help now so that Lily can return to education. We don’t have any more time, either with the GP or to wait around for another pointless referral; we’ve been through 3 rounds with CAMHS already, to no avail. Meanwhile I’ve scheduled a meeting with college this afternoon, and I need to be able to offer them something, a concrete assurance that it won’t happen again. But if I push any harder with the doctor, then it merely confirms her opinion that I’m the one with the issue, not Lily. From past experience, it’s only mothers who are treated this way, not fathers. And had Lily attended the appointment with a chaperone from college, say, the outcome may have been different again. After 11 years of struggle, I’m tired of fighting to try and get what should have been freely offered over a decade ago. When will autism be properly funded?

Past experience has shown that there are plenty of people getting paid to work within the SEN industry but none of it seems to be trickling down to support the kids that need the help. One time I attended an autism support meeting, the only parent there due to poor publicity – meanwhile the 6 professionals in attendance brought out their packed lunches and chatted away to each other, but not to me. That’s 6 professionals being paid to attend a meeting to support parents of autistic kids, which was in reality just a subsidised jolly. Or the autism support worker who only worked in schools and didn’t do home visits even when we explained that Lily was being home educated. So you’re not actually offering any kind of support then? Meeting after meeting with school staff and SENCOs with no real change, no progress, no actual support. One even questioned why Lily would qualify for DLA/PIP, before deciding for herself that her ADHD meant she’d need to eat more meat! Perhaps job descriptions for SENCOs should demand that they actually have experience of SEN? Meanwhile, I’ve a train to catch…

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.

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.