On anger and housework.

Bone weary. The house unravelling around me. A month ago I had the downstairs looking reasonably clean and tidy to the point where I wouldn’t be embarrassed if someone called in. Now I’d have to barricade the door. The relentlessness of it is wearing me down, while frustration and resentment build up that the kids ignore the chores while I nag and nag until I’m screaming. When I finally crack and yell and get either of them to at long last do the thing I’ve spent days asking them to do – take a bath! Take your clean washing upstairs! Bring your laundry down to the basket! Please fetch the dirty glasses and plates from your room! – they look at me like I’m being entirely unreasonable.

This is not how I want my life to look. Or feel.

Last weekend I had to drop everything to take a friend to hospital, about fifteen miles away. I sat with her for two hours, until they decided she needed to stay in for 24 hours. She didn’t have anything with her, so I drove back again to pack an overnight bag, making sure I washed the dishes sitting in her sink so she wouldn’t have to come home to them. I stopped off to buy a couple of drinks and snacks to make sure she didn’t go hungry if the NHS food wasn’t up to much, and because there’s not a lot of choice of drinks other than tea and coffee. Back to the hospital, keeping her company for another hour until visiting time was over and she was being taken away for an X-ray. It was about six hours all in all, and I didn’t mind any of it, I’m glad to be of use to her. “This is the closest thing I’ve had to a night out in a long time,” I told her. I wasn’t even joking.

What I minded was texting the kids at 9.15pm to let them know I was on my way home, only to be told that they hadn’t cooked enough food for me after all and I’d need to stop off and buy some dinner for myself. Thank God there was a Tesco Express close to the hospital. Getting home after 10 to discover that no one had thought to wash the dishes but had just piled up more, and that the laundry – my bed linen – was still hanging on the line in the damp evening air. Lily was still playing on the computer in the living room – despite having assured me in an argument earlier that day that she was perfectly capable of self-regulating her computer time, breaks, conduct etc.

“Lily, you’ve been playing on it for over seven hours straight.”

“No, I’ve taken some breaks, I was doing Wii Sports with Ivy.”

Taking a break from the computer to play on the Wii is not what I consider a legitimate break. It took another twenty minutes to chase her off it and into her bedroom, then I sat down with a sad-looking microwave carbonara that went against all of my dietary rules, in a living room full of computers, wires, papers and general detritus.

This is not how I want my life to look. Or feel.

I wanted to flop down on my bed, exhausted, and go straight to sleep. I had to make it first, with slightly damp sheets. I tried to convince myself the dampness would be refreshing after another hot day.

Morning, and the messy kitchen still needs to be tackled, the dishes are still waiting to be washed. A mouldy glass of water appears overnight, brought down from someone’s bedroom. It takes some doing to create mouldy water. The garden needs watering, and the weeds need pulling before they take over. Another load to put in the washing machine, and when did Ivy last change her bedding? A meal plan needs putting together, a shopping list made and presumably shopped for. There are bricks to collect from a house around the corner, before the skip is taken away tomorrow, they’ve said I can have them for my garden to make paths with. I need to cancel my car insurance and hire a handyman and fill out the forms to reclaim the travel costs from Lily’s last appointment, and sort out a new password for my bank account. I’m still feeling angsty and agitated after a week in which several strangers saw fit to have a go at me over things that really didn’t warrant it – triggering as hell after 4 years of Simon blaming me for stuff that wasn’t my fault. Half of me wants to curl up under the sheets and not get up, the other half is screaming that I should just jump in my car and drive away, escape and leave it all behind. I’m going to have to have the talk with the kids again, the same one I keep having, the one that goes I need you to help me. You live here too. You know what jobs need doing. Please do some of them without me having to constantly nag and beg for help. I really can’t do everything on my own. I am so so sick of this one-sided conversation. I’ve left a sign saying No Computer on Lily’s computer, but I can hear her playing. When I go down, she’s on the Wii instead, no chores done, no studying done, wearing the same clothes she’s had on all week and when I try to remonstrate that she shouldn’t be playing games when there’s jobs to be done, she’s utterly unrepentant.

“Get off my ass,” I hear her muttering as I leave the room. I explode at her, pent up with all the jobs I’m trying to do at once.

Do I have to die? Do I have to actually die before someone helps me?

It’s the relentlessness of being a single parent that’s grinding me down. There’s no pause button, no support, no respite. Not a single day off. Not a single night off. I need a holiday from my life, basically. A week where the stress and struggle can stop. I may as well be asking to go to the Moon. And beneath all this – the hurt. The injustice. The anger burning a hole through my chest. Because this is what Simon has done to me. I’m struggling day after day after day with no hope of respite, no hope of any improvement, while he lords it up in their big house, with parking and garage, with holidays whenever they want, with absolutely no responsibilities, no kids to make a mess or interrupt their plans, while still claiming that he is the victim in all of this. I want to scream. I want to throw rocks at his windows and plenty of other stuff that for legal reasons I should definitely not admit to in a public forum. And I despair. Will I ever be healed of this? Of him?

This is not how I want my life to look. Or feel.

I don’t want my life to be a constant reminder of the abuse that I was put through. But it’s hard, when every single day the house is still too small, and I don’t have anywhere to park, and I’m bent double under the weight of holding it all together and raising the kids single-handedly …and Simon’s got away scot-free. Without Legal Aid, there’s no way I could afford to take him back to court to get a fairer settlement, even if that was an actual legal possibility, which it probably isn’t. There should be a free tribunal, a couple of years after divorce, that you could go back to if it’s obvious that your ex lied about finances and circumstances and have any imbalances redressed. Too often divorce settlements are based on equal childcare that somehow disappears once he’s won himself a bigger house and more money than he’d have got if the judge knew the kids would end up with you full time. Sadly I’ve heard too many similar stories to mine and the injustice burns; what I went through, what so many other women have been put through, or are going through right now.

Every time I struggle to find a parking space for the night while I’m exhausted and having to carry shopping bags a quarter mile back to the house, I think of Simon with his garage and driveway. Every time the house feels cluttered and overwhelming and I despair of ever turning our too small house into a comfortable home, I think of Simon with his four bedrooms and two receptions. Every time I give up and close the holiday websites, knowing I just can’t afford to take us away during school vacations, I think of Simon, able to jet away with Astrid off-peak, whenever he wants. Every time I’m faced with Lily raging at me over school work, or being asked to take a bath, or refusing to get off her computer for a break, I think of Simon, who never has to bother with her behaviour. And so on, and so on. How do you heal when the very cornerstones of daily life are a trigger?

This might not be how I want life to look or feel, yet I have no idea of how to get from here to there. So many of us are in that same boat, trapped by financial circumstances that we have little chance of improving, certainly not when other factors are in play; children, disabilities, divorce, trauma, illness, family, lay-offs. If you have money, a solution is affordable for so many of the obstacles in life. If not, the obstacles seem insurmountable, blocking the path to earning the money that would ease the situation.

My friend texts me, she’s going to have to stay in for another 24 hours and needs me to bring more clothes. Here I am complaining about my life while a friend is fighting cancer. Another wake up call, but I’m getting angry at how it’s the good people who seem to suffer most. Prayer, Lottery ticket, a giant red button to just make things stop for a while; I don’t have the answers to how to make life better right now. I really wish I did. In the meantime; just keep breathing.

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.

Everyday crisis

Sitting in a local cafe, waiting for Ivy to finish therapy and Lily to arrive via the school bus. An overhead light flickers on and off, making crazy strobing shadows on the floor that feel like a horror film. Nearby a mother sits with her clearly autistic son, who having downed his drink now rocks and repeatedly tells her We need to go home now, while she does her best to ignore him, tapping at her phone screen. Finally, her coffee drunk, they get up and leave. I don’t judge her for trying to block him out – I know too well the struggles of having a child on the spectrum and how it wears you down. I do my best to ignore the flickering light, to take this hour and catch up with myself after a demanding week.

Lily’s work experience week did not go well. As usual, she did what she wanted, blanking out or messing around on the tasks that bored her. This time around, my Mum was present for her final day and so Lily wasn’t able to hide behind her usual excuses . Lily still insisted that she worked hard and did her best, meanwhile the office manager apologised to Mum that she wouldn’t be able to provide Lily with a reference as she really hadn’t earned it. After being called in by the manager to check on her because Lily had pinged an elastic band into her eye and was now claiming she couldn’t see and needed to wear an eye patch, it was clear that any plans I’d sketched for the week had to be abandoned; I was on call. By the afternoon of Day 2, the manager sent Lily over to the community theatre group making props in the church hall as it was clear that she was bored and unwilling to do anything else. That had already been scheduled for Day 3 – at which point Emo Lily, with heavily black-smudged eyes and face, argued with the organiser as she wasn’t allowed to play Marilyn Manson as they worked, then took 2 hours for lunch. Day 4, the day Mum was there as a witness, Lily did sod all but roll her eyes and sigh, until the manager told her there wasn’t much point in coming back after lunch. Given the amount of effort that I, Mum and the office manager had gone to in order to set this up for her at the very last minute, it was hellishly frustrating that Lily seemingly put no effort into it. I was just glad that I hadn’t succeeded in setting up anything more challenging – or even anything local – it would be embarrassing to be sitting in this cafe had Lily spent last week messing them around.

Back home and I struggle to teach her to think about others, to take responsibility for her actions and behaviour. I try to get her to understand how disappointing it was that she hadn’t put more effort into work experience when the rest of us had tried so hard for her. Try to get Lily to tell the truth, and to stop making excuses – always the thousand and one reasons why she had to do or not do whatever it was.

I don’t care any more Lily, I just want you to behave.

Perhaps it sounds harsh, knowing that Lily is autistic. Perhaps my expectations are too high. Yet Lily is evidently bright. She can be capable when she wants to be. Most of her behaviour comes down to Pathological Demand Avoidance, needing to be in control at all times and never wrong, an Aspie aversion to transitions and change, plus ADHD-driven inertia, difficulty with both starting and completing tasks. Back in the day she’d merely have been labelled as awkward, lazy, difficult, selfish and defiant. And that’s where it’s hard – she seems capable of so much more, of making better choices, of making more effort. She can do it when she wants to. It’s impossible to know what she’s actually capable of, where the line of autism and ADHD ends and the line of bad behaviour kicks in. Some would argue that it’s all down to her various diagnoses. Others would blame poor behavioural choices. And then there’s the ones who will blame bad parenting.

Yesterday brought a workshop with the local Carers’ group, followed by a meeting with the school SENCO. At the workshop the facilitator dared to say the unsayable; that in many ways, it’s easier with a child who is lower-functioning on the spectrum. This is heresy to some; above all, it’s really not helpful to get competitive over whose child is the easiest/most difficult to manage. Everyone is fighting their own private battles and it’s not possible to weigh up whether it’s worse to have a child who wakes throughout the night, or smears poop, or constantly runs off, or screams abuse at you in the supermarket. Yet she was talking from experience, a son who was more profoundly autistic yet in many ways easier to manage than his sister, whose Aspergers brought constant conflict, tension and verbal abuse on a daily basis. These are the kids no one knows how to handle, the kids on whom no behavioural strategy will work, who can seem bright as a button one minute yet next minute are in meltdown, refusing to cooperate, flying at you in a rage or head butting the wall. Kids who seem capable of getting decent qualifications, of going on to be independent and living their own lives… then have you lying awake with the realisation that they’re not going to make it, they’re just never quite going to manage, that either they will end up getting arrested, sectioned, or spending the rest of their lives still living at home, glued to their computer and arguing about cleaning their teeth or having a shower. Or worse. There is simply no provision for them.

The SENCO meanwhile assured me that Lily was being offered plenty of support in school, but was choosing not to utilise it. That countless times she’d seen Lily ignore the teacher, blank the TA and just refuse to do the work. The same verdict at home, at school, at work experience; Lily only does what she wants to do and kicks off about the rest. It has been this way since she was born. Unusually though, the SENCO took the time to tell me that I was a good mother, even though I generally never get to feel that way. There were the usual concerns of what support are you getting? and an insistence that I need to try and limit Lily’s impact on myself and Ivy. To which the answers are None and How? When I told her that we’ve found the perfect post-16 course for Lily, but it’s in a city over 30 miles away, she insists that I should drop the idea – it will be too taxing both economically and/or physically if I end up having to drive her there, unfairly impacting on both myself and Ivy. She also admitted that Lily was an extreme case, the first time I’ve heard this from a professional. The Early Help scheme was mentioned, and again I reiterated that while I was willing to try anything, I couldn’t access it if it meant that Simon would be informed. Despite the fact that Simon has now absolved himself of any and all parental responsibility (while retaining parental rights, of course), the knowledge that I was accepting help from Social Services would be like handing him a loaded gun and he wouldn’t hesitate to use it against me. Meanwhile Lily has been telling people that she’s been told she’s a psychopath and is just waiting for confirmation.

I sit Lily down for a talk and explain that her behaviour has to improve. That she has to put more effort in. That while ADHD makes it harder to do certain things, like getting started on tasks, it just means that at times she has to force herself to do it, like it or not. That we all have to do things we don’t want to do; I certainly don’t want to get up at 6.30am to drive them both to the school bus stop. She promises she will try harder, and she does, for almost a whole day. When she asks, I tell her she’s been 100% better. Then I discover she’s lied about finishing her Maths homework, neither has she made any attempt to tidy her room. Next morning I have to tell her several times to get up. I tell her she needs to read through her science topic for a test next week; she disappears to her room and refuses to come out. She doesn’t clean her teeth; by rights she should have a mouth full of fillings by now, she’s evidently hit the genetic jackpot. She goes to school without brushing her hair or teeth yet again, and yet another teacher emails me about homework not handed in, meaning that Lily is still lying to me about it. In her room, along with a mouldy apple core, discarded food wrappers, piles of detritus and dirty laundry she has a piece of broken glass by her bed and I know I need to check whether she’s been self-harming again. When I try to tackle her about the homework and emails from teachers, knowing she’s been given a detention over it, the lies continue and she denies it all, meanwhile Ivy chimes in that several of her classmates were there and told her that Lily was screaming at the teacher.

Sanctions are taken; Lily’s computer is confiscated, the WiFi password changed, the PlayStation put away. Result; behaviour miraculously improves, or at least it does until Lily gets what she wants, at which point it inevitably begins to slide downhill again. This time around, her computer gone and access to the internet withdrawn, she snapped at me that no, she wasn’t doing the dishes as requested, as I’ve got nothing left to lose. Battle after battle, day in, day out. The latest? That by trying to ensure she does her homework, I’m triggering her. If excuses were pennies, I’d be very very rich. The situation doesn’t change, only my ability to cope.

There’s over a month to wait before the next CYPS appointment, I don’t know how long before actual treatment begins. School holidays are coming and I don’t know whether to be relieved or scared. The only option meanwhile is calling the CYPS Crisis team, which makes me incredibly nervous as I don’t know what it will entail, whether I will have any say it what happens to Lily at that point. Because also; this isn’t a crisis. This is just what everyday life looks like.

The Psychopath Test

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

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

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

“No, it’s still here.”

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

“No.”

“Someone discovered the body?”

“No.”

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

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

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

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

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

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

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

Praying for rain

It’s been ridiculously hot. June passed without a cloud in the sky and no real rain, only the tiniest drizzle. For anyone trying to create a garden, this was not good news. The ground is too sunbaked to dig, and the new plants are desperate for water – I’ve lost count of the treks through the house with dripping watering cans in each hand. While I should no doubt count my blessings for the glorious weather, I’m craving rain. If the patterns of recent years can be relied upon, the good weather will continue right until the last day of term, when the heavens will open for the entire summer holiday. This will continue until the start of the September term, proving rubbish for those of us whose holiday ambitions stretch no further than a cheap camping expedition – then when the kids are back at school we’ll be treated to an Indian summer.

Truth is, I’m not great in the heat. I’m not great in the cold either, I’m an entirely temperate being. Dappled shade and a light breeze are what suit me best. I can’t think straight in the heat, can’t bear to cook in an already over-heated kitchen, hate driving in an oven of a car. If life consisted of siestas and ice cream and dabbling my toes in a stream, it might be bearable. Sadly, life continues on the same, heat-warped rails; school run, housework, shopping, cooking, driving. Oh, and fire-fighting.

The fire-fighting is getting tedious. Another week, another battle with school. Having just achieved some measure of satisfaction over Ivy’s need to switch teaching groups, the next problem arrives. Lily is supposed to be doing work experience for a week. This was all supposed to be sorted out before the January deadline, as Lily decided she would help with lighting and sound for the drama group production, a role she fell into by default last year when Simon didn’t return the forms for her much-wanted European trip in time. I figured it wasn’t exactly work experience but gaining further knowledge of the technical desk would be good for her and tied in with her music technology GCSE.

Two weeks before work experience is due to start and Lily tells me that school have told her she can’t do it. Cue panic, and much phoning and emailing. School insist they gave Lily this information back in January, and from what Lily says, I realise that everyone’s wires have been crossed. What they actually seem to have said to her was that “it might be difficult.” To an ASD/ADHD child, that doesn’t count as a No. Only a No counts as a No, and even then Lily might decide to take it as a Maybe. School insisted that they had given Lily further support to set up a placement, while I tried to point out that clearly they hadn’t – if she had been given enough support, then she would have a placement. The fact that she didn’t have a placement in two weeks’ time, was fairly obvious proof that not enough support had been provided. And for the love of God, why had nobody contacted me about it? This was information I should have been given months ago, as an SEN child is evidently going to need extra help when it comes to securing a suitable work experience placement.

So then, two weeks of last minute panic and stress trying to find something for Lily to do during work experience week, so that she didn’t have to stay in the school library doing extra Maths the whole time. Plus making sure that Ivy was ready for her European trip at the same time, which involved a major shopping expedition. Plus trying to buy a new secondhand car. Plus taking a friend to hospital appointments. Plus, plus, plus. Asking in different shops and cafes whether Lily could do her work experience there, knowing that it was all too late to be arranged properly. Over a hundred miles away, my family were doing the same – but it seemed to be work experience week across the nation, and the most likely places had long since been snapped off. Eventually, Mum managed to secure a few days at her church’s office – not something that Lily would have chosen for herself, but definitely better than extra Maths. The forms were frantically emailed back and forth, arriving on the teacher’s desk on Friday afternoon, with work experience due to start that Monday. The weekend disappeared in a flurry of driving – back down to the city for a college open day for Lily, then home, dinner, and over to the town where school is, as Ivy had thankfully arranged to sleep over at a friend’s house to be closer for the 3.15am drop-off for her trip. Then the four hour drive north to be at my parents’ house for Lily’s work experience, my own appointments for that week cancelled, including a place on a Photography workshop that I’d been looking forward to for ages.

There are times when it feels like all I do is complain. Times when I think I’d like this blog to be all light and fluffy and day-dreamy gorgeousness. But my life doesn’t look anything like that. Having a child with additional/special needs means that life is never going to be straight forward, never mind fluffy and gorgeous. Yes, I try to cherish the moment and remember to count my blessings – but life would be so much easier if schools created decent SEN policies. It’s hard enough trying to cope with a child who has significant behavioural issues, without having to constantly battle to have their needs met at school. To find several teachers have written in Lily’s end of year report that she needs to pay more attention in class – meaning me pulling my hair out in the kitchen as I read it because for Christ’s sake she has ADHD and needs a support worker to keep her on track and I thought we had this sorted out back in Year 7 and now you’re telling me that most of Year 10 has been wasted because you’ve withdrawn that support without telling me and I’m only finding out now when it’s too late?

In the same way that the garden is longing for rain, I’m thirsty for understanding. For compassion and consideration. For ease, for all of it instead of this continuous fire-fighting battle that I’ve been on for the past 15 years. Because I know it’s not just me – pretty much every parent of an SEN child is fighting the same battles, week in, week out. Fighting lack of resources, lack of funding, as well as lack of compassion and imagination. Fighting the tired old cliche that they can’t make exceptions for one child, despite the fact that they need to. Fighting the poor communication, the not being kept informed until it’s too late to do anything about it, the not sticking to agreements that you thought were already in place. And so this week; far more stress than I needed, entirely unnecessarily, and over 300 miles in a dodgy car that might or might not make it home again, while my garden shrivels in the heat and everything is postponed. I’m actually still waiting for the phone call from the teacher responsible that I was promised two weeks ago, the I’ll get back to you. I’m sure that school has written me off – I’m that angry, neurotic mother, always complaining about the lack of support given to her precious Snowflake children. That what I’m saying will be ignored, because most parents never make a complaint or request a meeting, therefore there must be something wrong with me. If only. I’m so over school, so fed up of the ridiculous pressure being placed on us for 100% attendance, never being late, homework always being handed in on time never mind how much has been set or what plans you have made or what’s going on at home, having the correct and expensive school uniform and PE kit, constant demands for money for this trip, that trip, music lessons etc.

I’m longing for the rain. I want to step outside in an evening downpour and feel the cool, refreshing shower wash over me. I’m longing for my parched garden to get that nourishing soak it desperately needs. Longing for life to feel like a cool glass of water instead of a wildfire.

Grand Day Out

(My Nan would have called this a “Knicky Knacky Noo Shop,” but I’m sure they’d prefer “Antique” or “Vintage”, Notting Hill.)

Lily has regular clinic appointments in London, which on the whole we tend to treat as a Grand Day Out, catching the first off-peak train and waiting until the afternoon rush hour is over before making our way home. A couple of times I’ve tried to fit in taking Lily to London while also getting Ivy to school but it caused to much chaos and stress. When the last trip meant an hour and a half’s delay on the train while Ivy was home alone, I decided enough was enough – Ivy comes too. Both children being off at the same time inevitably makes school suspicious, as if I’m determined to sabotage their education by secretly nipping off to the Seychelles for the day. But no – it’s a genuine hospital appointment, and I’m doing the best I can to balance everyone’s needs including my own. The trip is educational in its own way – as a former home schooler I recognise that everything has educational potential – and we usually end up in one of the museums, or exploring somewhere new. School holiday appointments bring their own problems – yes, we’re not missing school, but London is far more busy and crowded, proving too much for Lily’s Aspergers. Lily also refuses to use the Tube when it’s crowded, resulting in some epic walks across London to make it back to Paddington on time for the train home – this was especially difficult when I was hobbling along with plantar fasciitis, having to practise Lamaze breathing techniques to get me through each step of a three mile walk from Camden, having already been on my feet for most of the day.

(Sculpture or alien invasion, we couldn’t quite decide, River Thames.)

It’s hard to believe that I once wanted to live in London. I was all set on a career in The Media, without really knowing what that would look like, just that I’d be heading off to London to do exciting things in film and television or magazines. Instead I fell in love with Simon and moved to a tiny town where Media careers simply weren’t a thing. Now when I look back I’m not sure whether that was a wasted opportunity or a lucky escape – I’m not sure that I’d like the person that I’d have to become to succeed in that game. Certainly I quit my on-the-job training as a features journalist when I was being asked to phone an elderly woman who I knew was sitting in a hospital holding hands with her second husband as he was slowly dying from a brain tumour, to ask her whether her previous fiance had actually died in her arms or just on the floor. I couldn’t believe that anyone would think it was okay to do that, but the young woman on the other end of the phone didn’t seem to register that we were dealing with people’s very real lives and emotions and that there was a duty of care not to traumatise an innocent person for the sake of a single sentence of the story. I’d struggle to live in London now; the 24 hr hectic, non-stop pace, the busyness, the crowds, the glazed, unconnected look on people’s faces as they ignore each other in a bid to find personal space. It’s an entirely artificial lifestyle in a hard, artificial environment, something that I seem to struggle with more and more as I get older.

(We’ll take this one please, Notting Hill.)

The 2pm appointment cut into the day, leaving not quite enough time before or after to really do much. We decided to explore Notting Hill, finding brightly painted townhouses and a vibe on the chichi side of boho. One of the streets was unbelievably picturesque, each painted house seemingly trying to compete with the next, all with lovingly tended tiny front gardens that showed that even the smallest space can be transformed into a personal haven. We decided the house with roses spilling around the door and windows was our favourite. Neither of the kids have seen the eponymous film, but I pointed out some of the landmarks nonetheless; the Travel Bookshop, now a tacky tourist souvenir shop, the blue door that was supposedly Hugh Grant’s house, the cafe where he buys the drink he spills over Julia Roberts. The kids just asked who Hugh Grant and Julia Roberts were, and I felt ancient. We found a small public park in one of the squares, and sat to eat our sandwiches. There are countless such pocket parks around London, some public, some private, providing small sanctuaries of green to counteract the hectic pace of the city; more and more I find myself drawn to and appreciating such spaces.

(Pocket Park, Notting Hill.)

On the spur of the moment, we decided to take the bus to the hospital rather than disappearing back underground; remarkably I managed to work out which bus to catch from which bus stop. The drawback of the Tube is that you never build up a sense of London, how the areas connect and interact, the flavour of each district – each location is an isolated dot centred around the nearest Tube station. From the bus we could get a sense of people’s everyday lives, from the blocks of flats and corner shops, to the hidden Mews and gold Maserati. Plant pots balanced on windowsills, balconies dressed up with tiny gardens, a table and chair, or a washing line; little glimpses of lives being lived, of people claiming their spaces and dressing them up.

(Matching planters extends the wall height, creating a private courtyard, Notting Hill.)

After the rather intense appointment, we headed to South Kensington – Lily into the Science Museum while Ivy and I went into the V&A, relieved that Lily is of an age where I can let her wander on her own, mobile phone in hand. We’d intended to go look at an exhibition, but by that point we were both too hot and frazzled. Instead, we took our shoes and socks off and sat in the courtyard garden, dipping our feet into the water, instantly feeling calmer and cooler. A group of men in suits sat behind us, remarking to themselves that the toddlers had the right idea, going paddling, isn’t that what we all want to do, take our shoes and socks off and get in the water? I wondered what was stopping them. There were no signs up telling you not to put your feet in the water, no members of staff patrolling the perimeter. It was a very hot day. On some days I might have turned round and asked them directly, my own feet firmly in the water; what’s stopping you? Not on this day though. Too hot. Too overstimulated. I let them stew in their business suits. When we were ready to go, we rescued the fallen leaves from the succulents that had been planted beneath two tall trees. It was clear that these beds were not the right environment for succulents, and from the looks of it they hadn’t even been planted properly. Ivy picked up the fallen, plump leaves and stored them in her packed lunch box, hoping to bring them home and replant them.

(Giant bubbles outside the Science Museum, London.)

We came out of the V&A by the new side entrance, all gleaming white tiles and stone. The sun bounced off the white steps, dazzling us. I wish they’d planted a couple of trees instead. I’m not a fan of sleek, minimalist modernism, not when everything in sight is manmade, unnatural. Put a few trees in, a couple of raised beds, and I’d be happy. Instead, they’d made a sun trap even brighter, even hotter, to the point where it was uncomfortable for our eyes. I thought of the YouTube video I’d watched in the bath that morning, a couple in Mexico who transformed a wall in their house with re-used, repurposed plastic bottles, turning them into chains of planters, each one dripping down into the one beneath, the water caught in a reservoir bottle at the bottom and poured back into the watering can. A refreshing wall of green. I thought of the tiny balcony and basement gardens we’d spotted from the bus, of the smart front yards in Notting Hill, all cramming as much greenery as they could into tiny spaces. It seems a human instinct to bring nature into our living spaces, to prettify and green up our personal environments. Yet too often nature is simply missed out of the equation when it comes to public spaces. I’m with Hundertwasser and his tree tenants and grass-roofed buildings. The city is an alien enough environment; we’re simply not designed for such high-density, fast-paced living – there are even video adverts on the side of London bin lorries, for goodness sake. If we venerate design as being entirely man-made, if we exclude plants and trees as being too messy for our sleek, hip, spaces, we create more artificiality. We contribute to the chaos of the city. Sitting around the courtyard pond, an environment with grass, trees and cloud-trimmed bushes, everyone was relaxed. On crowded tubes, busy pavements and visually over-stimulating unnatural environments – adverts crowded in to every space, people are frazzled.

(Wild strawberries growing in public park, Notting Hill.)

Often on the train home, I head into the corridor long before our stop, knowing that once we’ve passed the final station before our own, we head through wooded valleys where the river winds through. The window open, I breath in the cool air, smelling the damp earth, calming my hyper-stimulated senses with the greenness of it all. There’s still the drive home, the kids to be put to bed, jobs to be done – and then hopefully the first sip of a much-awaited cup of tea before falling exhausted into bed. Wondering how on earth people manage to live full-time in cities like London, so cut off from nature, knowing that I’m glad I’ve opted for a quieter life. Knowing too that we all need more green – in our homes, our gardens and in our public and work environments. And if anyone could work out how to cover a tube train in moss and ferns, we should give them the horticultural equivalent of a Nobel Prize.

Exhaustion and the quiet of the suburbs.

Saturday. The alarm switched off the night before, being able to sleep in until the heady delights of 7am, when my bladder can’t hold out any longer. There’s the list of weekend chores to tackle, but I’m exhausted. I manage to wash up, put the school uniforms in the wash, start emptying the bins… by lunchtime I’m struggling to keep my eyes open. Today would be a good day to start work on the herbal garden, but instead I crawl back to bed for a nap.

It’s not been the worst week, but it’s been tiring and stressful – battling with school over meeting Ivy’s needs, the strain of the car breaking down again and worrying at one point that we weren’t even going to make it into town for the school bus without having to push the car ourselves. Taking a friend to the shops even though I didn’t need to go myself. More arguments with Lily, a paediatric appointment, and having to contact the two other hospitals we deal with to get advice about her medication and whether it could be affecting her behaviour. Lots of niggling jobs were ticked off the To Do list; emails, bills, the Tax Credits form. Possibly I over-exerted myself planting pretty much all of the remaining pots that were waiting on the patio. But by Saturday – total exhaustion. It seems to go this way most weekends – the plans I want to make fall by the wayside as I don’t have the energy to carry them out. One day at home to catch up with homework and chores, to decompress after the busy week, and then a day to go out and have fun as a family, get a change of scene – that seems ideal to me. In reality, it’s one day spent feeling like The Walking Dead, barely able to do anything at all, and one day spent catching up on twice as many chores.

Lily and Ivy know that there are chores to be done, my new system is write out a list on Friday evening – everybody then chooses a couple of jobs and gets through them as quickly as possible on Saturday morning. I’ve had to enforce this by changing the Wifi password until the jobs are done; tiresome but effective. Otherwise I have to do absolutely everything on my own until I’m on the floor with exhaustion and frustration – it’s impossible to make progress on the home and garden fronts when you’re struggling to manage the daily chores. Or to put it another way – it’s depressing to spend most of the day working hard outside; clearing, digging, painting, mowing, trimming, shredding, planting, weeding – then come back in and discover the kitchen is piled high with dishes that nobody else is washing. Yet still, even though they know that the chores need doing, even though they know that they’ll lose their internet access, nothing gets done unless I nag and chivvy them into it. On the days when exhaustion wins out, I simply don’t have the energy to fight to get the kids to do their part. Frustration and resentment bite hard.

No sooner have I decided to give in and take a nap then out they come. The strimmers, the mowers, the hedge trimmers, the pressure washers, even at times the cement mixers and circular saws. All the noisy outdoor appliances that the suburbs can muster. I close my window and try to relax, but the noises grate on my tired mind. From her bedroom, Lily lets out random shrieks of insane-sounding laughter as she watches endless YouTube videos- a noise that grates even further as it’s proof that she’s neither doing her homework, nor tackling her chores. It’s not as if I can throw my windows open and order my neighbours to shut up while I get some sleep, and I’m done with arguing over Lily about what she should be doing. I’ve been spoiled by the House in the Sky – being detached, with only two neighbours to worry about, the other houses spaced out far enough for noise not to matter. When people mowed their lawns or set to with the strimmer, it didn’t sound as if they were waving them around right under my bedroom window. Am I right in thinking that there’s areas in Europe where there are very strict times about when you can and can’t mow the lawn? It sounds very oppressive to say that lawns can only be cut at 9am on Sunday mornings, but then – what bliss to enjoy the quiet for the rest of the week.

I’ve always beaten myself up over days like this, the days when nothing gets done, intentions swirling down the drain of exhaustion. Now I’m trying to give myself more wiggle room, more compassion. Accepting that much of day to day life feels like a battle, that ASD/ADHD makes life feel harder, uses up more energy. That it’s been a week of doing things that I find difficult, that the stress means paying a price, several shiny gold tokens extracted from my energy levels. When Lily was a lot younger, we learned the hard way about her need for decompression days – generally after a day or so of absolute hell when we were supposed to be on holiday. It didn’t matter how fun it was, how many activities there were to do, how great the swimming pool was or how many places we wanted to explore – after a big day out, we needed to spend the next morning at home (or in the tent, caravan etc), letting Lily chill out, watch her videos etc. If not, she got over-stimulated, over-tired and there was hell to pay – screaming tantrum after screaming tantrum.

I’m only just realising my own need for decompression days. Society isn’t very good at taking a pause though, something that’s getting worse instead of better, an endless push for faster, harder, more. If you’re ASD/ADHD, your head is full enough already, 50 brain tabs running all together while being constantly bombarded by sensory overwhelm. Noise is a big one for me, something I’m noticing when trying to drive; it’s why I’ve bitten Lily’s head off at times when she starts immediately fiddling with the radio and changing it to one of her CDs while I’m still absorbing the energy of both kids coming out of school full of complaints and chatter, the frenetic car park of pupils and vehicles moving in and out, the queue to get out, the cars whizzing past on the main road… SHUT UP ALREADY! I guess that’s why when I travel earplugs are essential, otherwise I can’t sleep – my brain recognises that the noises around me aren’t right and starts freaking out, trying to pick up every sound in case I’m in danger.

The fastest way to improve the everyone’s work-life balance would be to make the weekend a day longer. The bliss of having that extra day during Bank Holidays or Inset days but all year round- we get a decompression day, a chores day and a fun day. Personally I think it would boost the economy and the nation’s productivity no end, reducing sickness and stress and giving neurotypicals another day to go to the Mall and spend money. In the meantime, I may have to buy ear plugs for home use too, or fantasise about a return to scythes and old-fashioned non-electric mowers like my Grandad had. Wasn’t Poldark supposed to have sparked an interest in scything again? Thinking about it, I know one of the actors in the TV series… could I get Poldark himself to scythe my overgrown grass and set off a quiet new suburban trend?