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.

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.

Spinal Tap and the Art of Survival

Another Spinal Tap week. You know the kind, when every time you manage to tweak your personal stress dial down to maybe a 6 or 7 (with autism in the house, it will never be below 5 unless several of us are unconscious), the Universe decides to crank it up to 11. So just as I was trying to build some order into our days, organising days out, insisting on chores and that Lily did some studying… a friend was hospitalised for almost a week. She has no family and is a single mother, which made her heavily dependent on friends to bring in changes of clothes, wash laundry as needed, bring her son in to see her. Most – almost all – of this fell to me, as it seemed very few were stepping up to help. It’s not possible to say NO to someone who is in hospital alone, scared and desperate, at least not for me. So my two have been left to their own devices – literally, computers and phones – while I’ve been driving to and from the hospital, dashing into the supermarket, collecting her son, cooking and houseworking, and still trying to squeeze in a couple of trips and activities for the summer holidays, all the time knowing that this wasn’t sustainable. Thankfully, as I write this, she’s now been released, but will still need a considerable amount of help at home; her home is half a mile away though and not fifteen miles, which makes it easier.

Several things emerge from all this. Firstly a documentary by Paul O’Grady about the working classes that I caught during the week in which he suggested that being working class was an attitude and set of values – the unspoken implication being that working class people had a stronger moral ethic about looking after each other. It had to be that way, helping each other out in times of illness and hardship, creating a web of kindness and loyalty that was the earliest version of the Welfare State. You helped each other, because you might be next in need. You helped each other, because you were up close with each other’s suffering, and one family going under could be any family going under. I’ve heard it argued that going wayyy back in history, the tribe’s hunters would share out the meat they’d caught – it wasn’t exactly easy to hoard it, pre-refrigeration. Stockpiling it or demanding that others paid a high price for it (pre-currency) just wasn’t feasible. Sharing it was not only generous, it boosted your social value to the tribe and created a debt of gratitude. If the hunter was injured or ill, it was then more likely that they would be looked after by the others. The anarchist creed; from each according to their ability, to each according to their need. Until relatively recently I’ve always believed that most people acted in this way, now I’m not so sure; a lot of people seem to be walking around wearing the attitudinal equivalent of Melania Trump’s I Really Don’t Care jacket. So; care. Help. Be kind. It’s revolutionary.

Second – thank God for the NHS. I’m trying to avoid politics on this blog, but it’s not as if politics are separate from real life. Things that our grandparents and older generations fought for are under attack again, as chunks of the NHS are sold off to private companies, workers’ rights are eroded through zero hours contracts and enforced “self-employment” for firms such as Uber, meaning that people lose the right to holidays, sick pay, pensions etc. Again, I thought that those battles had been won on the understanding that it was right and necessary to pay workers fairly, give them enough time off, look after them when they’re sick… but no, there are still too many bosses and CEOs who really Really Don’t Care and are more than willing to exploit others for wealth. I’m in despair at where our society is heading and that the fight – basically the fight to get everyone to treat each other with respect and fairness – is neverending. But in the meantime there’s a 10 year old boy who still has a mother, thanks to the NHS.

Third – if it were me that was ill, I’d be screwed. I don’t have any back up, no one to look after the kids, drive them to school etc. I really don’t know what I’d do and it’s terrifying. I will just have to add it to the list of things I’m not allowed to think about.

Fourth – I can’t change the circumstances. I can’t magic good health for my friend, a house with a parking space for me, or take away Lily’s epilepsy or ADHD. So it’s going to have to come down to changing my attitude – grrr, my hackles are up already at the thought of it – and developing better coping strategies. I’ve been complaining too much, which seems fair given the stupid amount of things I’m having to deal with, but which doesn’t actually help any. This creating a life worth living isn’t easy, particularly when the pressure keeps getting turned up, but I’m so aware of how my days have become about surviving rather than thriving, and wanting to change that. Better support systems are required – and let’s face it, we’re talking self-support here – somehow finding habits and actions that build positivity and peace of mind. I also need more downtime and mental space, particularly if I’m going to seriously start writing again; I can squeeze in the time, but my brain is too frazzled to do anything with it. Which makes it sound like I need to take up meditation. Bother. Perhaps I can transmute this into more gardening instead?

Fifth – I’ve been determined to keep up with my newfound exercise. I refuse to use the word regime. Still fitting in an early morning swim, a yoga class, a Pilates class before heading off to hospital or the To Do list. Before now I’ve had gym memberships that went entirely to waste – exercising was something I should do rather than wanted to do, and working out felt like punishment. Now, I’m treating it as me-time and approaching it gently, making it far more sustainable. I’ve still got absolutely no desire to head into the proper gym and attack the treadmill or cross-trainer, and so I’m not going to beat myself up about it. I might be the youngest in my exercise classes by a good 20 years, but hey – it’s working. Exercise is becoming my support rather than a bugbear, which is a lovely, positive shift. Along with intermittent fasting and a general reduction in snacking and comfort eating, I’ve been able to lose almost a stone over the past month. I guess this ties in with the previous point, creating support systems and positivity. Finally, I’m seeing some kind of recovery in action. Now I just need to expand that into the rest of my life…

The Summer Manifesto

“What on earth is that?” my friend asked, staring at the corkboard in my kitchen. On it, a piece of paper covered with writing and drawings, proudly bearing the title Summer Manifesto.

“Oh, it’s just a list of things we’d like to do this summer,” I answered, suddenly embarrassed by her tone. Was this yet another thing that normal people didn’t do? And if so, how did they keep track of all the different activities on offer, places to go, films to watch, stuff to try out?

That was a few years ago, but the Summer Manifesto has now become a tradition for us. Everyone is encouraged to come up with ideas, on the understanding that these are suggestions, and we might not be able to do all of them- it’s critical to manage expectations when dealing with Aspergers. Suggestions range from going to a particular park to swimming in the lake, having a picnic to going on holiday. The unlikelihood of being able to afford a holiday makes our Manifesto even more important when it comes to making our summers special. It means on days when there’s nothing planned we’ve got a ready made list of suggestions. It also lets me know what the kids’ priorities are, rather than me setting up activities they’re not that interested in, and that sometimes their wishes are remarkably simple. Plus it gives me a chance to look in advance for Groupon offers for things we might not otherwise try.

I’m a firm believer that kids need downtime, so I don’t pack every hour of every day with non-stop activities. In fact it’s vital to build in Decompression Days after a big day out to prevent everyone getting overtired and overstimulated and generally hellish. The flip side of that is that it’s easy to let the school holidays slip away without really having done much. Having a manifesto means I can make sure we’ve got at least one activity or outing planned for each week, rather than realising we’re into the final few days of the holidays and need to cram it all in at the last minute. It makes it more likely that I’ll have thought about things in advance and therefore have time to invite a friend to join us. The main benefit is that by the end of the summer, we’ll have had a bundle of good experiences as a family which otherwise wouldn’t have happened. Given the nastiness of the divorce, I’m keen to pack as many positive experiences in as I can before the kids are grown in the hope of giving them at least some happy memories to look back on.

The Manifesto also lays out expectations around chores etc, making it clear that no electronic gadgets are to be used until chores have been done. When the kids were younger, the rule was they had to choose 2 out of 3 activities; something creative, something educational, or something helpful. Allowing them to make a choice made them feel more empowered, meaning it was more likely that they’d cooperate with what was basically an attempt to make sure that they didn’t spend all day every day watching TV or playing on the computer. This year, aged 13 and 15, I’m just laying down the law as to what needs doing around the house; if it doesn’t get done, the planned activity isn’t going to happen. I’d really like to encourage Lily to spend some time studying as she enters her final GCSE year – it’s unlikely that I’ll achieve this without a massive amount of conflict though.

So on Day One of the school holidays we sat down together to work on this year’s Manifesto, complete with a Pinterest inspiration board to back it up with. This year’s suggestions vary from make smoothies to have a campfire to fix up the bikes and go for a ride, all the way up to hold a festival in our garden. Allrighty then, I’ll see if I can get The Killers booked in for next Thursday, and maybe a Portaloo or two. Like I said, it’s an ideas list so everything is allowed but not everything will happen. Alongside it is a weekly planner sheet to write on the day’s activities and chores, plus any reminders about appointments etc. It’s what works for us, another example of how ADHD requires us to be more organised in a way that has other people describe us as OCD or anal or asking What on earth is that? Whatever. On the second day of the holidays we were running round shooting each other at Laser Tag, which wouldn’t have happened without the Manifesto. Next week it’s Tubing at the nearby ski centre, courtesy of Groupon. We all want to think of ourselves as spontaneous but it’s worth planning for fun; the sands of time will keep on trickling through the hourglass of our days regardless of whether or not we’ve planned for them. Let’s try and make sure that some of life sparkles on its way past.