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.

Meltdown

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

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

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

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

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

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

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

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

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

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

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.

Fire-fighting and the Magic Button

“I’d like this year to have less fire-fighting,” I tell my counsellor. “I want things to be a bit calmer.”

She looks at me. “Is that realistic, given Lily’s difficulties?”

The impact of her words hits my chest like a punch. As ridiculous as it might seem to an outsider, I hadn’t actually considered that. I’d merely assumed that I was doing something wrong and that the stresses and emotional turmoil we endured over the last year could hopefully begin to fade away if I just tried harder, worked on myself, operated from a place of stronger mental health. Maybe meditating, drinking green smoothies, reading the right book; somehow there had to be a way of finding normality, of making everything okay. The Magic Button, in other words.

When you have a child with difficulties such as autism and ADHD, people look to you for the Magic Button. Teachers, grandparents, even going way back to kindergarten and crèche workers will all at some point sit you down and inform you that your child isn’t responding to them the way he/she should be, and is misbehaving (“making poor choices” in modern day teacher-speak) and so could you please give them the Magic Button? You know, the one key phrase or action that means your child will suddenly switch off their challenging behaviour and behave perfectly for them.

Over and over you explain that there’s no quick fix, no instant solution, no Magic Button. That you really have nothing to offer other than the general advice to try and keep a sense of humour, patience, very clear instructions etc, and that some days none of it will work. That Lily is genuinely not capable of holding it together 100% of the time, that 80% is pretty good and she just can’t manage that final 20%. They won’t accept that though. If she’s capable of “making the right choices” 80% of the time, surely she can do this 100% of the time? She just needs to make better choices, that’s all. So if you can give them the Magic Button, they can get her to 100%, tick all the boxes and go home happy.

“There is no Magic Button,” you find yourself explaining yet again. My God, you wish there was.

I hadn’t realised that I’d got into that same mindset myself. Expecting myself, or an as yet unknown professional to suddenly come up with the Magic Button that would “fix” Lily’s behaviour. If I found the right supplement, or therapist, or managed to explain things to her in the right way, it would all click into place and life would begin to flow more smoothly. It’s very hard to accept that this isn’t an option. Weirdly, it’s hard to accept that maybe I’m not actually doing anything wrong.

Of course, it’s impossible to tell how capable Lily really is. It seems that she can be intelligent and relatively capable when she wants to be, but demand avoidance and Oppositional Defiance Disorder combined with ADHD mean that it’s virtually impossible to motivate her when she’s not interested. Given that she still refuses to do any studying, despite her GCSEs rapidly approaching this year, it’s evident that her grades could be improved if she put even a tiny amount of effort in. But she won’t. And there’s the issue – do I accept that refusal as part of her condition, or do I continually fight against it? Similarly, should she accept that part of her make-up that leads her into stubborn refusals and defiance, or should she work to change it? Can it be changed, or even improved a little? I don’t have any answers, see-sawing between feeling sure that Lily needs pushing to do better, or wondering whether in fact she’s more disabled than anyone gives her credit for.

“It’s like trying to push a double decker bus up a hill,” I explained to the counsellor, describing how it felt to battle to support Lily every day. “Exhausting, demoralising and you can’t make any progress upwards, all you’re doing most of the time is trying to stop her from sliding back down the hill into the swamp.” The swamp – my fear for Lily, borne out by too many of the ASD/ADHD families we’ve met – of a child/teenager/adult who never comes out of their bedroom and spends their entire life playing computer games, rather than existing out in the real world in any meaningful way. So what? some people might say, the kind of just let them do what they want and keep them happy philosophy that I’ve learned doesn’t work with Lily. A life spent playing computer games in the bedroom is a life only half-lived – and when you know your child has more to offer than that, it’s heartbreaking to see their gifts go to waste. Lily could achieve a lot with her music, if she could manage to stay on track and put some effort in, particularly if this was backed up with the right educational support. And there goes the next major issue, the total lack of provision for autistic kids, which warrants an entire post in itself. Every single day brings the same battles over the basics; getting up on time, cleaning teeth, studying, bathing, chores, homework, getting off the computer, bedtime… “What happens if you just don’t?” one mother asked me. Then she won’t do them. She simply doesn’t get out of bed, misses school, smells bad and the mouldy dishes pile up in her bedroom while she builds her Minecraft empire late into the night. There’s choosing your battles and there’s what if all of it’s a battle? Because if you ease off, even a fraction, the bus starts to roll downhill, likely flattening you in the process. And then there’s the phone calls from school…

That week, the same quote keeps appearing in different guises. You can’t calm the storm, you can only calm yourself. You can’t stop the waves, but you can learn to ride them. A sense of acceptance is beginning to form, the tiniest seed of realisation that needs to be nurtured; I need to detach. I can’t stop the storm, but I don’t need to hurl myself into the raging waters. If life is never going to be smooth or easy – if the firefighting is going to be endless – then I need to take a step back and find my anchors, develop the self care practices that are going to keep me calmer and help me cope better. I’m never going to be able to stop the stress from arriving, but perhaps I can try to create the space in my life to help me deal with it. A combination of detaching emotionally so that I’m not getting hurt on a personal level by whatever’s happening, while also vastly improving my own self care and support systems so as to be able to stand stronger and not crumble each time the storm hits. The image I have is of being able to watch the storm through a window, rather than battling to survive the elements in a tiny boat as I’m battered by wave after angry wave. That’s the idea, yet turning it into a reality remains an unknown quantity. Still, it feels that I’m sitting with the right questions at least, even if I don’t yet have the answers, nor the Magic Button. Perhaps the Magic Button was always the individual’s coping mechanisms, and not about the SEN child at all.

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.

Mary Poppins Syndrome

I got sick. Again. This time around it was supposedly just a cold, picked up from my Mum while we were visiting. But while Mum and the kids were under the weather for a few days, I’ve been ill for over a month with no sign of improvement. It’s a measure of how run down I am, I suppose. There simply aren’t any reserves left to fight with. So; long blog break.

In the last couple of weeks we’ve started our appointments with CYPS. So far Lily’s psychologist seems more concerned about me than Lily – at least, there’s the recognition that I’m too exhausted to start implementing new domestic routines to help with Lily’s behaviour. I’ve more than a sneaking suspicion that the Psych believes that everything will be fine if only I could be a bit more patient with Lily, and that a marvellous transformation will occur if I’m able to face every situation with calmness and positivity. There should be a law stating that no one can make that kind of judgement until they’ve lived with Lily for at least a week, and then multiply their stress by a total of fifteen years. Like yesterday, when the kids had agreed to make their own way to the school bus stop so that I could have a lie in, I then had to intervene over the phone as Lily was refusing to give Ivy her spare bus ticket – Ivy was crying, thinking she’d be left at the bus stop with no way to get to school and yes, Lily was quite happy for that to be the outcome. It wasn’t even 7.30 am, so goodbye lie-in and hello more stress. Still at least the Psych realised that I’m traumatised from the abuse during the divorce, and that the day to day demands that I’m facing are just too much to deal with. When I ran through the stresses I was facing, the psychologist looked at me in horror “But no one could cope with all that,” she told me.

Yes, I know, I wanted to scream. Here I am, not coping. There’s talk of what support will be put into place, referral to this and that, but I know better than to hold my breath. Too many times we’ve been promised support and none has arrived, so I’ll believe it when I see it. Either the support doesn’t exist, has sadly just been de-funded, the people delivering it are too flaky to make it consistent and sustainable, or the support on offer isn’t the support you actually need. Frankly, I want someone to look after the kids for a week while I get sent on an all-inclusive holiday – that’s the kind of rest I need. Or for someone to come round and cook dinner, wash up and hoover for a couple of weeks. Or drive the kids to school and back for me. Something tells me that these options won’t be included in the support package. When you’re this burned out, what you want is for someone to say Honey, go to bed. I got this.

Being so ill and drained all the time is incredibly frustrating. The pallets I’ve been collecting for months are laying around in the garden, ready to be turned into a shed – if only I had the energy to tackle it. There are plants and bulbs waiting to go into the ground. The decking attached to the garden cabin has rotted, because whoever built it didn’t think to put gutters on it, so that all needs redoing – as well as the roof finishing off properly (People, do not half-tile an already felted roof. Tile it all or don’t bother.) I keep forgetting to tackle the jobs on my list, such as getting home insurance quotes before it automatically renews, calling one lot of builders to see if they’re booked in to fix my shower, and calling the other builder to see about replacing the rotting doors. And oh – the dishes, the endless stack of washing up piling up in the kitchen. So I’m flunking at all the stuff that needs doing, never mind the additional stuff that I want to do on the house and garden. Right now, trying to make sure the kids get to school, we have food in the house and clean plates to eat it off is pretty much all that I’m managing. It sucks.

It sucks doubly because the kids are getting older. Which means two things; one, they should be old enough to help and take responsibility for themselves instead of me having to do everything for them. Two, they won’t be kids for much longer. And there’s the heartbreaking reality – I want them to be able to look back on their childhoods and remember the good times, not the living with an irritable, burned-out exhausted mother in a cluttered home where everything needs fixing. It’s like the bulbs for the garden – if they don’t get planted now, they won’t bloom in Spring. It’s too late. If I don’t start building the shed, the wood I’ve gathered will start to rot. If I can’t somehow pull together our lives and our home into something more harmonious, the kids will have grown up and left. As much as I want to heal and go gently on myself, there’s a timeline here. I can’t press a magical pause button so that the world will wait until I’ve caught up.

It’s Mary Poppins Syndrome, the desire to click my fingers and have everything fall nicely into place, preferably with the aid of a magical helper. Living – the real life we should be living – is deferred until the future when everything is in order. I have the firm belief that if I could just catch up with myself, get to a place where the house is in order, then life will begin to run smoothly and everything will be less overwhelming. I’ll be on top of things, instead of constantly skidding down the avalanche of chores and responsibilities as they pile up on top of me. No doubt life would feel more pleasant if I lived in a home that was always Instagram-ready, but I have no idea of how I’d reach that mystical stage without Ms Poppins’ intervention. The inbox is never empty though – even if by some miracle the house was “done,” it wouldn’t stay that way for long. Sustaining it requires energy, and that’s exactly what I’m lacking.

Clearly my healing and recovery needs to include my physical wellbeing and it’s fast becoming a priority. Doubtless the physical is also affected by the emotional/psychological, and vice versa; it’s hard to be upbeat if you’re constantly ill and exhausted, and stress/trauma will likely create ill health. Healing needs to take place across all areas, and apparently at the same time. So tomorrow I’m heading out to forage some elderberries, if any are still around, and maybe some rosehips too to make an immune-boosting syrup, on top of the supplements that I’ve begun taking. Time too to think about therapy, to start looking for help rather than struggling on alone, to make plans for recovery rather than waiting for Mary Poppins.