I’m on my hands and knees picking up broken glass and chunks of vomit from Lily’s carpet, while she yells at me 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?