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?

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?