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?

The gift of an ordinary life

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

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

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

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

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

Breaking point

I’m painting the fence bit by bit, stopping before my body aches and demands a break. In general though a break would be good. Any kind of break, except for the ones involving bones or water pipes. A lucky break; the Lottery, please. A holiday break. But most of all a break from constant problems. Even just a week or so in between problems would be nice, but no, they keep on flying relentlessly towards me like oversized gnats with fangs and awful body odour. So, on the happy happy day that I got my new boiler, I also got a call from school to ask whether I was aware that Lily was self-harming and appeared to be having schizophrenic episodes?

Oh boy.

Please, just a week? One week without fresh trouble? One week in which to live as close to normal as is humanly possible?

No.

Lily insists she can see shadowy figures appearing in her bedroom, that someone is there, in the corner of her eye, taunting her. She’s using a shark’s tooth I gave her years ago to carve deep scratches in her arm and hands, says she enjoys it. Says she feels like she’s losing her mind and that most of her friends are too, and that the scratching makes it feel better.

None of this is good news. And if it was Ivy saying this, I’d be freaking out and rushing to the nearest child psychologist I could find (although frankly, referrals are rarer than unicorn eggs in our overstretched child mental health services.) But it’s Lily and therefore much more complicated. We’ve just come through a couple of months in which Lily has been lurking in the shadows, complaining that the sunlight hurts her skin – thankfully this was Winter, so there was precious little sunlight to deal with. Momentary concerns that this was due to a reaction to her epilepsy medication were pushed aside when Ivy explained that Lily has been writing her own manga comic about a Japanese vampire. She’s also been putting a considerable amount of effort into learning Japanese, and has mentioned a few times that she likes the taste of blood. So – no side effects, just Lily playing out being a Japanese vampire. She’s been asking for a parasol to keep the sun off her face – this has also been inspired by Abby, her favourite character in NCIS, who doesn’t seem to venture outside without a parasol and ear protectors. The inside of Lily’s mind must basically look like an acid trip, all neon colours, dancing squids and fantasy and reality blurring into one.

Lily has recently decided that she is now an Emo; all black clothes, Panic at the Disco, My Chemical Romance and such. Combine this with a bit of a wave of self-harm passing through school, a few friends with issues, and there we have it; Lily’s latest obsession, played out in all its glory. Hello Aspergers/ADHD. In the past it was cars and dinosaurs, now it’s Emo, madness and self harm. And although the scratches are disturbingly real enough, I suspect the madness is make believe. Except of course, it’s complicated – Lily then believes her own fabrications. What she invents then becomes real to her; she will swear blind that she really really did go to a parallel Universe and discover that she was actually dead in that reality. It really happened, and woe betide anyone who dares suggest that it didn’t. So how on earth anyone can start to unpick whether or not she’s really seeing people in the corner of her room, whether she really is losing her mind or whether she’s playing out an elaborate fantasy, I have no idea.

Another day, another call from school. Lily has been banging her head against the desk in an alarming and bewildering way. She’s threatened to cut someone’s throat. She’s been belligerent in class and answering back to staff. Her cuts are seeping through her school shirt – are they fresh scratches or has she been picking at the scabs?

I don’t know. I’ve run out of answers when it comes to Lily. Even though I suspect it’s make believe, I feel I’m in way over my head. The school nurse calls me in for yet another chat – there are probably some lucky parents who don’t even know that the school has a nurse. “I know it’s not my place to say this,” she tells me, “but I found I was questioning whether this real or not?”

I nod. “I don’t think it’s real,” I tell her. The trouble is, I don’t have a clue what to do about it. The scratches on her arm are too obvious, she’s been showing them off rather than hiding them. But still, they’re there, and it must have hurt.

“I always tell parents not to worry about it so much if you can see the marks,” the nurse reassures me. “It’s when they’re doing it more in secret that it’s a problem.” Although thinking about it, how would you know if they were doing it secretly?

Not real and yet all too real.

What do you do when your child is pretending to have schizophrenia? This is now just the latest problem, the new normal. Something has gone wrong with the kitchen light switch and none of the lights are working, I’ve rigged up a lamp so I can see to cook and wash up. The shower still isn’t fixed and I need to chase up the builders for a quote. The car is making a strange noise. Lily’s still not doing enough homework. There’s a damp patch in the hall. Ivy’s nervous tic has returned. A garbled message is left by the Child Maintenance Service, sending me into a panic that Simon’s found another way to pay less. One at a time, please.

I need a break from adulting. I’d like to resign, at least for a week or so, put my hand up and admit that I don’t know what the hell I’m doing. This is the reality of single parenting. I can’t go to Simon to discuss Lily’s problems; this is a man who has previously written to doctors to try to undermine Lily’s diagnoses when he thought her disabilities might get in the way of his plans to sell the family home. Instead, I worry that he will see her arm and call Social Services again; ammunition is more important to him than Lily’s wellbeing. It breaks my heart that it’s come to this, that the father of my children can’t be trusted to do right by them. That the responsibility for their wellbeing now rests entirely on my shoulders, the double whammy of hoping that I can do a good job of raising them while worrying that not only am I failing, or unable, but also that any mistakes will lead to further attacks from Simon. Parenting is hard enough without the other parent actively working against you.

Thankfully, a letter arrives from the local Young People’s Services offering us an initial appointment after a referral from school. Successful referrals are so rare that this is truly miraculous. The fantasy is that this will lead to Lily getting the help she needs. The reality is that it might go no further than this initial appointment. Fantasy, reality, normality. It’s not just Lily who feels she’s going mad, at times my head feels under so much pressure that I’m sure my skull is going to crack; the wrong kind of break. I’ve been at breaking point so many times in the past couple of years that broken feels normal.

Last Autumn the fence blew down. Ivy helped me to repair it, hammering new posts into the ground and patching up the broken, rotting fence as best we could. This past week I’ve been painting it, trying to make it look nicer while wondering whether I’m wasting my time, whether it will make it through another winter. Knowing I don’t really have a choice, I can’t afford to replace it – I’ve just got to make the most of what I’ve got. The pretty sea-green paint now reaches halfway down the garden, post by post, brushstroke by brushstroke, plodding on with it when I can. The broken fence was a problem; we dealt with it, and for now it’s holding. For now, I’m making the most of it while it lasts. For now, I’m being the best Mum I can manage to be. Maybe Lily really does have schizophrenia, or maybe this is the follow-up to the Japanese vampire phase. There’s no break from any of it; the challenge is learning to accept that and carry on regardless. That broken fence isn’t going to fix itself. No one else is going to paint it for me either. Just keep going. Paint while the sun shines, hang a lamp so you can see in the dark.

Overwhelm

How can I make a garden when there’s so much to do in the house? Time, energy, money, all are limited. The one thing I have in abundance is overwhelm. When it comes to fight or flight, I freeze. It’s taking all I have to stay on top of the regular chores, the endless cycle of cooking and washing up, laundry, the relentless school run, the demands of two teenagers, and even the barest attempt at cleaning. We’ve never properly moved in, the whole house feels cluttered and chaotic. The shower broke soon after Lily starting using it; this time I can’t really blame her as it’s probably around thirty years old. Ivy’s attic bedroom isn’t properly insulated, and I’m scared that this includes the entire loft, creating condensation, damp or rot, which accounts for the apocalyptic numbers of woodlice in her room. The boiler has stopped working on account of the snow, leaving us without central heating or hot water during the coldest week in living memory. The back porch has a leak, the back door is rotting and the front porch isn’t watertight either. There’s a list of phone calls to be made to builders, to advice lines, to doctors, school, therapists, solicitors. The car broke down – yet another bill to pay. Every time I manage to save a bit of money, whether for a financial cushion, or to put towards one of the jobs that needs doing, another bill springs up to snatch it away. Right now I want to shut the door and walk away from it all.

People get through trauma in different ways. Through the domestic abuse support group, I met women who lost their appetites due to stress. Instead, I’ve been comfort eating to the point where I’ve put on around 4 stone in as many years and most of my clothes no longer fit. I met women who combatted their anxiety by throwing themselves into the housework, cleaning late into the night. I find myself hiding from the dishes piled up in the sink, avoiding the clutter, sitting motionless on the sofa and wondering what happened to the day. Why can’t I have useful anxiety? I ask myself, berating myself for not having the “right” type of stress-response, one which would see me lose weight and gain a clean, tidy house. Occasionally I manage a burst of activity, complete one of the big projects – building wardrobes in mine and Lily’s rooms, putting up shelves in the tiny hallway. Since Lily moved in full-time last December, it’s gotten harder and harder to get anything done; the added pressure of living with her ADHD/Aspergers adds an extra level of stress and chaos. At times it’s like living with Taz, the Tasmanian Devil in the Warner Brothers cartoons, a whirlwind of mess and fury.

So how am I going to manage to create a garden when I can’t stay on top of the dishes? Without heat and hot water it’s even harder – I now have to schedule swimming each week so that we can get clean, while dish-washing means repeatedly boiling the kettle to get hot water. It’s almost impossible to dry clothes, so the amount of laundry I can get through each week is reduced to one or two loads, carefully planning the timing so as to make sure that school uniforms get priority while also hoping that no one runs out of clean pants. Ivy has developed gluten and dairy intolerances, making mealtimes more complicated. Life seems to be an endless round of school runs, shopping, cooking and washing up. When I’m in the house I feel overwhelmed by it all, not knowing where to start – especially given that the house is too small for us and that no matter how hard I work at it, the mess will take over faster than I can clean it up. The same tasks, over and over, the same nagging at the kids – can someone please put the dishes away so I can wash the next lot, you’re both supposed to cook at least one meal per week, can dishes be brought down from bedrooms, can dirty laundry be put in the basket, can people please reclaim their clean laundry and put it back in their rooms? Homework! Have you done your homework? Please don’t snack on the food I’ve bought to make dinner with. And for the love of God, can you both please set your alarms and get out of bed on time in the mornings, without me having to yell at you to get up for school every single day? I am a nag, I am a skivvy, I am a mind-numbingly boring housewife, a drudge and yet I can’t even get control of my drudgery.

There is nowhere to put the Hoover. Henry should probably live in the pantry cupboard under the stairs, but that’s where the step-stool currently resides, making it easier for everyone to reach the top shelves. So Henry sits glumly cluttering up whichever room he was last used in. He seems to symbolise so much of my struggle to get on top of things; an item we need and use but can’t find a place for in a too-small home which is chronically short of storage. With everything, the avalanche effect. In order to find Henry a home under the stairs, I’d have to clear out the entire pantry and reorganise it. In order to clear out the pantry, I’d have to clear up the kitchen to make space, and in order to do that I’d have to do a lot of sorting in the kids’ rooms, and so on. Each job is a chain reaction, and it’s hard to find the starting point. Along with the suspicion that I have undiagnosed Aspergers, I also fit the criteria for ADHD – something which feels more like a relief than a diagnosis, explaining why I find it so hard to get organised, why I can’t get started, why I never get finished. My current state of mind, the anxiety and trauma and depression, mean it’s even harder; I have no mental clarity, no focus and precious little motivation. Whichever room I’m in, I don’t know where to get started. Each item I look at either creates a fresh chain reaction of To Do’s or throws up more questions – do I need this, do I use it, where should I put it, or if I’m going to get rid of it, where should it go, should I donate it or try to sell it, how can I avoid it ending up in landfill? And all of this is only on a good day, a day when I have the energy and motivation to even try to get started. On a bad day – forget about it.

I need peace. I need order. Being out in the garden would almost certainly improve my state of mind and wellbeing, yet it’s hard to allow myself to get out there when so much needs doing inside the house – and so I end up achieving next to nothing, caught in a trap of indecision, guilty feelings and anxiety. There are days when my anxiety levels are so high that I struggle to leave the house – which includes even going out into my own garden. There are days when my sense of overwhelm is so high that it’s easier to run away, to stay out and not come home to face the laundry. At times I need to remind myself of how much I’ve achieved under difficult circumstances, that when we moved in just over a year ago, none of us had beds, or wardrobes, and every single room was piled high with boxes. I need to be kind to myself, talk to myself the way I’d talk to a friend, encouragement rather than blaming and shaming. The past few years have been so hard, without respite from the abuse and stress and anxiety. I’m gradually trying to build a new life for us, doing my best to help the kids through their own struggles while not getting any support for myself or for them. I need to accept that many of the negative voices playing out in my head were placed there by Simon, and that my home doesn’t need to be picture perfect.

Be kind. Be kind. Be kind.

For me, that might mean giving myself permission to begin my garden before my house is ready. To trust that by following my instincts, my gut feeling that creating the garden is part of my healing process, it’s more likely that I’ll find the peace and clarity that I need to get control over other areas of my life. That it’s not possible to be perfect – ever – never mind when you’re healing. That I need to follow the small breadcrumbs that my soul is trying to lay down in the forest, tiny morsels of comfort in the moonlight, before the birds of doubt swoop down and gobble them up with the drudgery of each passing day.