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.

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…

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.

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.

The trouble with CYPS

Another CYPS appointment; drive over 11 miles to school to collect Lily, drive 11 miles straight back to the clinic where the session is held. Sit in a waiting room where Heart FM is playing at full blast, in case Sarah, the therapist decides to involve me in the session. The chairs are ridiculously uncomfortable, the inane shouty DJ is giving me a headache and there’s nowhere to get a cup of tea. I wait for half an hour, trying to use the time to answer emails, before I’m summoned into the room. Sarah begins telling me about how she’s been learning about Lily’s interests and would I like to hear about what she’s been doing on the computer? I bite my tongue before I can point out that I live with Lily, that the computer is in the living room and therefore I get to see and hear what Lily is doing on the computer. Every. Single. Day.

Sarah tells me what Lily has been doing on the computer and asks me for my reaction. Lily’s computer use is highly problematic for us as a family; she becomes obsessive and addictive while on it, and entirely disregards all of the rules and agreements that we’ve made about it, namely that she needs to have done her homework, revision and any outstanding chores before using the computer. Time and again I’ve had to drag myself out of bed to tell her to get off the computer and go to bed, even after midnight. While gaming online, she yells, screams and swears at the top of her voice no matter how many times I intervene and tell her not to. If I try to turn the computer off, she physically fights me to stop me – the only thing I can do is then confiscate the entire thing when she’s at school. Rather than do what it takes to get the computer back – chores and homework (and by chores I literally mean one small task per day) – she then resorts to aggression or emotional blackmail such as threatening to kill herself if she doesn’t get it back. She switches it on as soon as she gets back from school, or first thing in the morning if there’s no school, and will remain on it all day and late into the night. If Ivy needs to use the computer for homework, there will be yet another fight. Lily will promise anything to get the computer/internet back when it’s in Time Out, but will never stick to those agreements. She has posted videos on YouTube in which she’s ranting, swearing and being aggressive, and refuses to take them down, has posted one in which she was improvising a flamethrower in Simon’s kitchen, and I narrowly managed to prevent her posting a video in which she cried hysterically while claiming she’d been diagnosed as a psychopath. She simply has no concept of the damage that she could cause for herself or others, that dodgy online stuff has a nasty habit of reappearing in the future, and so I’ve banned her from “vlogging” – yet another rule that she entirely disregards.

Sarah is aware that I’m broken, exhausted and struggling. She’s aware that computer use is a contentious issue. Yet she seems displeased when I respond through gritted teeth that while it’s great that Lily has for example made some music on the computer, she shouldn’t be playing on it unless she’s done her homework and her chores. She sends Lily out of the room and essentially tells me off, albeit couched in friendly therapist speak, for not managing to be enthusiastic about Lily’s computer use. That I’m too critical, I’m not affectionate enough, that she has a duty of care towards Lily and needs to ensure Lily is not subjected to emotional harm. Really? I think, Where the hell where you when Simon was subjecting the three of us to severe emotional and psychological abuse? How come all the evidence I’ve gathered, including the audio recording that Lily made of him being hugely abusive and attempting to alienate them from me has been entirely ignored by the authorities? Seriously, you’re going to insinuate that I’m being emotionally abusive because I can’t fake a happy face about Lily breaking the computer rules on a daily basis? Sarah goes on to point out that last week’s session was about addressing my needs and we’re now getting support from Early Help. Um – do you mean the session where I was kept waiting for over half an hour, feeling worthless because I’m evidently not important enough for anyone to speak to, and triggered because that’s the kind of thing Simon used to do? Also no – I’ve had a referral to Early Help. I’ve not had any actual help yet. So basically, nothing has changed since we first walked in to the clinic a month ago, yet Sarah is acting as if I’ve now had all the support in the world and the issue is that I’m just not patient and positive enough around Lily. Sarah also appears to have forgotten that she brokered a deal with Lily about her computer use during the last session, one which Lily has entirely disregarded; evidently Sarah is not going to hold Lily accountable for this, but rather is reinforcing Lily’s poor behavioural choices, making me look like the Bad Guy for insisting that Lily follows the rules.

Lily was referred by the pastoral team at her school as an emergency case. At the time she’d punched other kids at school, was acting aggressively and threatening members of staff, and was disruptive in class, claiming she could see people who weren’t there, or demons climbing up the walls. She had been self harming, and her behaviour was becoming more and more bizarre as she imitated characters from her favourite anime, literally living out her day as a fictional character. Also – and the part which seems to be continually overlooked – she had threatened me, firstly with a heavy stone pestle and then with the kitchen knife. What I find most disturbing – as well as the knife incident – is that she was deliberately faking having psychotic episodes. She didn’t really see people or demons, she was acting out. The self harm was carefully controlled, scratching rather than cutting, and displayed to others at school. In addition, the only time she ever shows me affection is when she wants something. Every time. If she starts cuddling up to me, I can feel myself getting tense because I know she’s about to demand something from me. Sarah was emphasising that Lily was a child with diagnoses, but then again she had Lily down as being 14. Lily will be 16 in three months. If she continues punching people and being aggressive, she’ll get arrested. If she continues acting out like a crazy person, she’ll be sectioned. It doesn’t matter to the police that she’s deeply immature or autistic, if she’s behaving like a menace to the public then they’ll take action against her – and as she will continue to be aggressive towards the arresting officer, the situation will spiral out of control. I suppose I’m lucky that we don’t have guns. In America, Lily would have been singled out as a potential school shooter. I’m not trying to make some kind of sick joke – she would literally be on the “concern” list, invited in for regular chats with the school counsellor as her behaviour has been so extreme.

If Lily was my partner, people would be urging me to leave her; the pathological lying, the aggression, the total lack of regard for other people. But she’s my child, therefore I’m expected to not even complain. The reality is that I need respite, it’s a lot easier to manage her behaviour if I’ve been able to take a break from caring for her 24/7. When you’re having to fight the same battles day in day out – over issues as simple as Lily cleaning her teeth, or taking a bath, never mind homework and computer use, it becomes exhausting and demoralising. When you’re dealing with aggression day in day out, it wears you down and erodes your self confidence. If I got a job at a specialist school for autistic children, I’d be given training and support. As a parent it’s a case of just getting on with it – or the offer of yet another parenting course in which you’re told to be positive and enthusiastic, or even to just give the kid exactly what they want to keep them quiet. Broke the computer again? Oh well, let’s buy you another one. I wish I was joking, but that’s what the advice on Challenging Behaviour workshops boils down to. Nobody ever works one-to-one with your child on a sustainable therapeutic basis; instead the onus is always put back on the parent; untrained, exhausted and demoralised, to somehow wave a magic wand and make it all better.

We should have had a referral to CYPS about seven years ago. It should have been automatic when Lily was referred to the Tavistock with gender dysphoria, but we were knocked back. We’ve had one six week block of art therapy for her about five years ago when the service was still CAMHS and Lily was newly diagnosed with ADHD, but several rebuttals since then. I’m aware that children’s services are woefully overstretched and underfunded, but I refuse to say that we’re “lucky” to have had the limited support that we’ve had. It’s a disgrace. Even before she’d met Lily, Sarah was hinting that perhaps talking therapy might not be appropriate and seeming very much like she wanted to take us off her case list before she’d even started, the easiest way of clearing out the waiting list. The trouble is there is nothing else. If CYPS don’t help us, it’s the end of the road, unless I pay for private therapy. Yet it’s clear that at the moment, I need therapy myself – if I go under, both of the kids go under, and I can’t pay for all of us at once. We might only get 8 sessions with CYPS, and Sarah is going to be moving away halfway through those, leaving Lily with someone else – my next fear is that we’ll get no further than essentially having two rounds of getting to know you sessions with two different therapists, and no actual progress will be made. In the meantime I’ve now had four occasions of leaving the CYPS clinic feeling utterly demoralised to the point of suicide. I’ve had to sit on a park bench, sobbing in public until I could calm down enough to drive us home, knowing that if I had a knife in my bag I’d be using it on my wrists. Each time, I’m left fighting to survive, building myself back up before trying to repair the additional damage that has been done to the relationship between Lily and me.

A recent documentary showed how nationwide CYPS is underfunded and overstretched, and that children and young people are repeatedly being turned away while their problems grow worse. As a parent it’s heartbreaking and terrifying to watch your child’s condition worsen week by week while not being able to get them the help they need – unless of course you can afford to pay for private treatment. Frustration and anger build as GPs refuse to even attempt to refer you to further services. Again and again you’re told that there’s nothing they can do, or that your child’s problems aren’t serious enough, while you watch your child slipping further down, further away, losing them a bit more each day. Your stress and anxiety build, until it reaches the point where you need help too, and your own ability to cope and support them diminishes. And because the “support,” if and when it arrives, has been so hard-won, you close your eyes and pretend that it’s fine, it’s making a difference, even when it’s not. You don’t dare complain for fear of losing everything. I’ve met countless families where this is the nightmare reality. Our kids are stressed and sick and left to get on with it. Our autistic kids are entirely ignored and unsupported. Meanwhile no one is taxing the rich or the corporations and the luxury goods market is at an all time high. A local aristocrat featured in a documentary about the wealth divide, shrugging her shoulders that “poor” people were just jealous of her lifestyle and needed to work harder (she herself had married into a titled family.) No. The system is stacked against us, social mobility becoming increasingly harder in a world of Zero Hours contracts, huge university fees, student loans, eye-wateringly expensive property prices and precious little job security, not to mention the nightmare that Universal Credit has been. But we’re not jealous of Cartier watches and polo ponies. We’re angry that our kids are being left to rot so that the rich can feel even richer.

The Psychopath Test

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

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

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

“No, it’s still here.”

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

“No.”

“Someone discovered the body?”

“No.”

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

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

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

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

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

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

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

The gift of an ordinary life

I think I might just have got the very thing I’ve been asking for for a long time; a week where nothing happened. Granted, it was preceded by a mental health crisis that I could have done without, but then there was definitely almost a week where there were no new problems to deal with. I cracked on with the garden, the housework, trying to catch up in general. It was bliss. This is what normal must feel like, I told myself. With the weather being so beautiful I’d persuaded the kids to catch the bus to and from school, which meant a much earlier start in the morning but resulted in so much more time and energy for me.

Of course, it couldn’t last. I made every effort to let the Universe know how much I appreciated the gift of a quiet, ordinary week in the hope that I would continue to be so fortunate, but no. Normality resumed. The quote for the shower came in around £500 more than expected. A phone call from school to let me know that other parents were expressing concern about Lily’s behaviour in class, given that she spent the whole time talking about being a vampire, seeing demons and being in possession of a Deathbook, all of which caused too much disruption in class to be tolerated. The CYPS crisis team had been contacted and were expressing concern that Lily’s epilepsy medicine might be behind what appeared to be some kind of delusional psychotic crisis, and the teacher urged me to contact them myself. Why? I found myself thinking. This is just normal for us. None of it is actually real, it’s more that Lily is now play-acting to an absolute extreme. A second call the next day to say that Lily had spent her IT lesson refusing to do any work, insisting instead that she needed to use the internet to help solve a murder in Utah. Thank God it was the last day of term, although the pastoral teacher didn’t think I was going to survive half term looking after Lily on my own and ordered me to make an appointment with the GP as soon as possible. All of this happened while I was in the middle of a meeting with a local charitable organisation in the hope that they could help me get back into work. Frankly, it did nothing but prove that a job would be impossible to handle right now.

The plan was to head up north to spend a few days with my family and celebrate my Dad’s birthday. We set out over an hour later than I’d hoped, because of course Lily had decided to get the late bus home from school so she could do her music, despite knowing we were heading out on a long drive. Similarly Ivy hadn’t bothered to pack the night before as requested, and the minutes slipped by later and later while I despaired of ever leaving, knowing how tired I was going to feel with a five hour drive ahead of me. Almost as soon as we set out though, the car started flashing up error messages; faulty brake light. Error; Anti pollution faulty. The car was struggling to get up to speed, feeling sluggish and juddery. I pulled into a garage to double check my air pressure, in the hope that this would magically transform the performance of the entire vehicle. No such luck. By the time we got onto the motorway, it was clear that the car wasn’t going to make it. Instead, we came off at the first junction and headed for home. This is after the car breaking down on the motorway in February, after paying to get through the MOT in January and after replacing the clutch last Autumn, plus repairs to the radiator. I did my best to get the car fixed on the following day, but the garage weren’t able to solve it in time before closing for the bank holiday, leaving me with a car that wasn’t behaving well enough to undertake any serious driving. Half term, bank holiday and we were stuck. The trip north was cancelled and neither could I risk any of our usual day trips.

Meanwhile Ivy has been falling apart over being placed in a new teaching group without any of her friends. She’s had such a hard time in the last couple of years that I’ve contacted school to ask if she can move classes – of course, all I’m getting back is the tired old we can’t make exceptions for one child or we’d have to do it for everyone. Oh really? So if she had hearing or sight difficulties they wouldn’t arrange for her to sit at the front of the class? Ivy has severe anxiety, probably ASD-related, and is still recovering from depression. I’m doing my best to explain to school that this grouping means putting her through further stress and anxiety, including IBS and nausea, so loss of appetite and skipping meals, insomnia and fear about going to bed, plus inability to concentrate in class, inability to raise her hand or answer questions, inability to contribute to group learning and projects, while struggling to control her breathing and fight off panic attacks. It’s taken so long to build up her confidence after all the trauma, and I’m tired of having her knocked down again by either Simon or school. But schools nowadays just close ranks; it’s all about conformity and saving face, there’s never an admission that they’ve made a mistake, there’s no compassion or flexibility. She spent most of today in tears and I’m tired of being fobbed off. So; yet another battle. And now Lily is intent on being “L” from Deathnote, at home, at the supermarket, at school… and now the Tax Credits form needs to be filled out, and so on and so on.

Please stop, I beg the Universe. Please, no more. Give me the gift of an ordinary life, just long enough for us all to recover. Outside, the roses are blooming; can’t we just stop for a while, long enough to smell them?