Like the majority of the secular inhabitants of our archipelago nation, to me, Good Friday means ‘bank holiday’ and, perhaps, 'uptick in trashy chocolate intake' but little else. However, this past Good Friday proved itself very well-named.
After a hurried lunch, Spike and I hopped eagerly into the car and made a bee-line for Shepherd's Bush, buzzing down one of the long sides of the Shepherd's Bush Green triangle, past the Empire and onto Goldhawk Road, making a sharp left at the railway bridge on to the nondescript Wells Road. This is the location of London United's Shepherd's Bush Bus Garage and we were there by special invitation of Rob Garrard, Chief Engineer of RATP Dev London (parent company of London United).
I should rewind a little. Just before Christmas, I was having my usual moment of gift-angst in relation to Spike. He almost never asks for anything, and it can be difficult to identify things which might please him. That is not to say he is difficult to please. We can step out of our front door, walk 200 metres to the bus stop and make his day, but finding something to wrap and put under the tree is a different matter. And then, out of the blue, he asked for a duvet cover in "bubbles" moquette. "Moquette" for those of you who don't know, is the coarse, velvet-like fabric commonly used to upholster seats on public transport. "Bubbles moquette" is a particular design used by the aforementioned London United. I was fairly sure he wanted a duvet cover with the design, rather than one actually constructed from moquette (cosy!) but, regardless, I wasn't going to be able to find one on Amazon. With limited options available to me, I contacted RATP to ask whether it was possible to get a good quality image file of the design, so that I could have a duvet cover printed up.
I assumed that bus operating companies had better things to do than concern themselves with unsolicited emails about duvets, so I wasn't holding my breath for a reply. But then The Lovely Rob (as he should be known) got in touch. One very cold day in early March, I sat outside a cafe on the Fulham Palace Road under a thoughtfully-provided blanket, and had a nice phone chat with Rob. When I hung up, he had offered to have a moquette cushion made up for Spike (his interest in duvets having been overtaken by sleeping bags) and had extended a visit to one of the company's bus garages.
And, so we got to do something that made Spike very happy indeed! Spike was beaming and bouncing up and down from the moment we stepped out of the car. I hoped it wouldn't be "too much" for him. Sometimes he can be overwhelmed by even very positive things. When Spike was smaller, I remember giving him gifts that he liked so much, he couldn't look at them directly - only squint at them using his peripheral vision. I needn't have worried. His eyes were like lasers, as he drank in the floors slick with diesel and the buses with panels removed, giving up their secrets to him. Rob's tour was well-thought out and interesting, as he showed us everything from the canteen where the drivers ate their pre-shift breakfasts, to the bus wash, to the engineering pits. It was interesting to see what caught Spike's imagination. He was keen to climb down into the pits and see under the buses. He adored fixing a grab pole that had been lying in pieces on a seat, awaiting repair, and could have fixed it on a loop all day. He was bowled over to see the racks of upholstered seats in moquettes old and new. And the very special bespoke moquette cushion went down very well, indeed. It was all we could do to get Spike off it, so we could pack it away in the car! Spike left utterly inspired, wanting to draw all the little details that he had seen and to review the photos and videos that we took.
This was an outstanding act of kindness on behalf of the lovely Rob. Rob told me he doesn’t know much about autism, but that he had been touched by the notion that “Spike never asks for anything” and that when he had asked, it was for something slightly impossible. He did it, with no fanfare, purely because he could.
Kindness has been on my mind, recently, particularly in the context of transport. I hold, in one hand, Rob’s unexpected act of generosity, but recently I’ve had to grapple with unkindness, too.
I take Spike home from school on the bus almost every day. This is undoubtedly the high point of his day, and a decent reward for the difficult task of attending to his learning while ignoring the sensory assaults of the classroom. Like every right-thinking bus rider, we head straight for the top deck and Spike busies himself taking pictures of handles, moquettes and poles. It's difficult not to notice him, as he bounces up and down, enthusing about the passing buses and expressing his excitement through verbal stims which imitate the specific whines and purrs of the bus. I'm always working on teaching him to be a considerate passenger. We have some hard and fast rules, but I don't want to squash his joy or hold him to unreasonable standards. I ask myself, is he louder than that group of tourists, or the woman on the phone. I juggle considerations like ambient noise and how full the bus is, while also ensuring he can be himself. But it's difficult - if he stands out, he becomes vulnerable. This is a new arena for me, as Spike ages out of that protective 'little kid' bubble, which forgives idiosyncratic behaviour in public. When Spike copies the bus noise under his breath, or photographs a stop button, he is not hurting anyone. He should not have to change his behaviour and conform for the sake of it, but we live in an imperfect world.
On our journey home, we are typically accompanied by groups of teenagers from the local secondary school and, on an almost daily basis, they mimic Spike's noises, snigger and talk about him unkindly in over-loud voices. Spike does not react, or show any unease, but he's smart and I need to assume it doesn't go wholly unnoticed. I wrote about a similar, though more isolated incident of meanness here, where I struggled to find the right words to let the individuals know they were being hurtful and needed to try harder. It upset me that I didn't turn that situation around and I told myself I wouldn't let that happen again. And so, I engage with these teenagers on the bus and it works, to an extent. I stand up and say "be kind". On one notable occasion, my words cut through Spike's bus-bliss and he turned around and said "Who are they?". "I don't know, you'd have to ask them", I responded. Spike addresses his question to them, "Who are you?" and five teenage boys scuff their feet and sheepishly volunteer their names. "What's your name?", one of the boys asks. "I'm Spike!", my son replies cheerfully. "Hi, Spike", they chorus. And from then on, I heard only idle chatter in the familiar dialect common to adolescents around these parts.
It turns out that saying “Be kind” is sometimes enough.
They were kids, too, those boys on the bus. By definition, they are immature and do not always comprehend the impact their words and actions have on vulnerable people. I believe the solution to this is, in great part, education. I wrote to their school and let them know what had been happening on the bus. I asked them not to draw attention to us, specifically, but to consider whether (as this was not an isolated incident) there was a need for further education in this area. To their credit, I got a response from the deputy head apologising and informing me that he would personally be re-writing their PSHE curriculum to include special educational needs and disabilities, with the aim of giving their students "a greater appreciation of the variation of the human condition". I can't imagine it will be a magic bullet, but it's something.
I am so glad that transport is Spike's passion. As I become more connected to both the transport industry and the many and varied appreciators and enthusiasts who orbit it, I can see that Spike might find community there. It is a group of people who share his interest, who appreciate a single-minded focus on technical details and revel in the rich diversity of mass transit. Transport connects, in more ways than one. This was one of the thoughts that lead me to try and formalise a community for Spike, by setting up Transport Sparks.
As Ben and I shepherd Spike around our lovely city, in search of a hubodometer on an Enviro 200 or a particular type of cooling fan, it occurred to me that there were probably hundreds of other parents and children doing something similar, and yet we were passing like N31s in the night. On the spur of a moment, I tweeted "Anyone in Greater London with awesome transport-obsessed autistic kids: do you fancy a social-club-network type thing? If so, get in touch! #autism". With the help of a re-tweet from the inimitable Geoff Marshall, word spread and soon it was clear that there was a demand for a "socal-club-network type thing" for young autistic transport enthusiasts. I promptly came up with a name, set up a Facebook group and Ta-Da! Transport Sparks! We are still establishing ourselves, but there are trips and visits in the works for our young Sparks and we are all getting to know each other. We have acquired nearly 350 members in a month and the group is tremendously active. I have been staggered by the levels of interest from the transport industry and adult enthusiasts, who have demonstrated yet more kindness, reaching out to see how they can assist. And within the group, people are stepping up and helping. They are taking the initiative, making the most of their contacts, sharing ideas and resources and supporting each other. We have a badge that, I hope, will enable us to spot and connect with each other when out and about. I hope Spike, and all the other unique, wonderful Sparks find it a source of fun and companionship.
Want to read more? Where now we have Bus Bliss, there was once Rail Love.
When I heard Spike’s school was holding a talent competition, I felt he should be a part of it. So much of school is about what he can't do, what he struggles with. This was an opportunity to celebrate Spike's strengths. We entered a sweet video of him draped louchely over a chair at our dining table, casually answering trivia questions about the London Underground with razor-sharp precision. The next day his classmates talked about the video, excitedly, and I received messages from their parents, marvelling at Spike's talent. One earnest parent enquired, "How did you get him to memorise the stations?".
It's not an unreasonable question, but it made me chuckle. The real difficulty would be trying to stop him from drinking up the slithering lines of transit maps, or from insta-filing the station sequences of route maps, or from committing the class and livery of each train encountered to his prodigious memory. Spike's intense interests are a thing to behold. His acquisition of this knowledge seems effortless.
Spike’s finds trains rebalancing and restorative. He is not the cliched London commuter, schlepping home through the specific architecture of the railways environs, rendered hum-drum through familiarity. Each mile of electromechanical patter and whine accrues Spike psychological tokens, which he can spend in less blissful settings. He returns home beaming, resilient, with a straight spine. For this reason, we try to accommodate his interest as much as his other commitments allow.
When the weekend rolls around, either Ben or I will accompany him on a jaunt to the outer reaches of the Bakerloo line, or to locate a Class 387. This is because we understand that Spike is a hard-working 8 year old. He is a stoic in small packaging, constantly facing challenges. But we also have to try and strike a balance between Spike’s needs and the needs of the wider family.
Our “divide and conquer” approach to weekend parenting reduces friction, but erodes our time spent as a unit. To avoid the fraying of family bonds we decided we needed a whole-family weekend ritual. My vote was for bacon sandwiches at a local cafe. Last weekend, we failed to make our appointment with bacon sandwiches, having got side-tracked by a soap foam fight and the subsequent clean-up. Oh well.
It is also true that sometimes we would rather not spend our days riding trains. But, perhaps not as often as you might think. At first, I struggled with these odd journeys and pressed Spike to travel to a destination where there was something to see or do - a museum, a park, shops. But, determined to meet him on his terms, I learned to relax. I people watch, I eavesdrop, I discover new parts of my city and connect them to more familiar geography. Make no mistake: this is top-quality Spike time, too. So rather than trying to restrict his interest (which would be fruitless and serve only to damage our relationship with him), we try to expand and broaden Spike’s horizons; we sketch in new zones of interest and lines of enquiry on his mental route map.
We also look for opportunities to leverage Spike's passion for trains. This might seem a little cynical but, while I think special interests are a powerfully positive force, they can become consuming. They can take over every conversation, every thought, if you let them. We want rail to be Spike's sanctuary, but not a hiding place. As well as stretching his interests, we look for opportunities to make them functional. We encourage Spike to be a good traveller. There is little point loving trains, but not being able to travel safely on them. We ask him to prepare a list of what he needs to pack, to plan journeys in advance, to consider alternative routes. We are teaching him to observe signage in order to navigate stations and to behave safely and well on platforms and in carriages.
It is notable that a good train journey can elevate Spike from despair to elation. But a line or station closure can send him plummeting into a black hole [shakes fist at TFL]. The intensity and singular focus of his special interest and of the emotions it inspires seems akin to falling in love. There is an obsessional desire to drink in each small detail and to devote every moment of wakefulness to thinking about it. Run-of-the-mill hobbies - a flirtation with embroidery or barefoot running - appear shallow and transitory when measured against an autistic special interest.
The progression of Spike’s focus from letters, numbers and shapes, through to film studio logos and idents - Universal, 20th Century Fox, Disney* and then onto logos from the high street, arriving at the famed London Underground roundel and, finally, at trains is an evolution of sorts. It makes sense. And so, I should have known it would happen: the segue from trains to buses, from rail to road.
Arriving at a train station prompts a tiny fizz of excitement. Less so since I have had children, admittedly, where a surplus of baggage and unpredictable juveniles mean the fizz is more like a cortisol spike. But there is a sense of possibility and a straight, swift line to your destination. Bus stations, on the other hand, are dank and smell of despair. Bus air is stale and - impossibly, too hot and slightly too cold. The windows get sweaty. Buses lurch and get stuck in jams. Despite their iconic, cheery red shell they sometimes feel drab. A little piece of me hopes this segue is a sub-interest (which can pop up and burn brightly before extinguishing). It is possible, however, that we are at the dawning of the Bus Era. So, for the past couple of weekends, I have been practicing "enjoying the ride".
There is a whole new vocabulary to swot up on - Abellio, Arriva, Alexander Dennis. A new design language to learn and many more eye-catching combinations of moquette and pole colour. Like trains, buses represent shared journeys. They are a public space. But the relative cheapness of a fare, the intensely local routes and the interactions with other road users make buses feel more humane. Bus passengers are famously less inhibited than those travelling by rail which, weirdly, makes me feel both safer and more vulnerable. On trains, the seats dictate that passengers must face one another. It is a confrontation of sorts. It forces you to look at your shoes. The serried ranks of bus seats, facing the direction of travel, give the illusion of privacy. Conversations proceed as they might across a kitchen table.
A weekend or two ago, I gritted my teeth and, at Spike’s request, embarked upon a journey culminating in a bus ride from Harrow & Wealdstone to Watford Junction. As the bus puttered into Bushey, the gentle mound of the heathlands hove into view beyond the antique high street and my spirits lifted. Buses give you a better sense of the geography of a place. The architecture of life is just outside the window, rather than an austere railway embankment. And I’m still not driving, which is excellent.
Accepting change is one of the pillars of our work with Spike. In life “Cold things grow hot, the hot cools, the wet dries, the parched moistens**...” and we, as parents, are arbiters of the approaching moment. We decide how much to protect him, how much sameness to concede, how much to expose him. We seek a fine balance between offering him a refuge and building resilience to the flux of life. And Spike is changing, too. First trains, now buses. I also need to accept change, and flow.
* Spike can write fluently in Disney font!
** Sorry for inflicting the word "moistens" on you.
Want to read more? My autistic son's true love.
The "naughty chair" and I were not strangers at nursery. I was not a tiny delinquent, but my occasional vices of biting and spitting necessitated intervention. Soon enough, I would leave my lawless ways behind me but, for a while, it seems I was That Kid. I clearly had stuff to get out of my system*. I don't remember enough to offer any insight into the motives behind my behaviour. Possibly my hearing was poor, so I was struggling to hear and communicate my frustrations. More likely, it was just a phase.
It surprises me how much I can remember from nursery. I remember dashing into the loos and weeing as fast as I could in the doorless cubicles. I remember the iron tang of blood in my mouth and how my cranium and jaw throbbed when I fell off the monkey bars, smashing my chin on the asphalt below. I remember milk break in the summer (before Thatcher snatched it), sitting outside on grassy hillocks clutching diminutive glass bottles of warm milk. I remember the particular satisfaction of piercing the silver foil top with a sharp, slim blue straw.
One stint on the naughty chair remains very clear in my mind. I don't remember what infraction had me banished there, but I was seething with indignation at the punishment and determined not to feel ashamed. It occurred to me that the chair elevated me above the others, not unlike a throne. At this, I suspect my chin went up a notch and my face assumed a look of haughty disdain for my subjects. My imagination had kicked in and all hope of me learning any type of lesson regarding behaviour and consequences went out the window.
On nursery days, I was ferried to and from home in a sky blue mini-bus. I have a flashbulb memory of sitting on the bus with my letter book in my hands. I can vividly recall the precise blue, the warm, matt surface, the shape of it. I spent a lot of time looking at this small blue exercise book while in transit. Each page displayed a letter in dotted print for us to trace, a relevant picture to colour and some lines to practice writing the letter. It was here that I started to learn to read. I picked up the letters and their sounds quickly and I left nursery well on my way to reading in earnest. This picked up apace at infant school where I read my way through their entire library of books, well before the end of my last year and was assigned my own reading "group" of one.
There were only 30 of us at infant school, spread between two classes. It seems this was not sustainable and, after a happy year or so, we were split roughly in half and despatched to the two local middle schools, which became "first and middle schools". Not long after the move, Mum had to go in and "have words" because I was being sent home with "Peter and Jane" books, while my bedside table was piled with the best part of Enid Blyton's oeuvre.
I hammered "The Faraway Tree", reading it over and over again. It is hands down Oscar's favourite, too. Of course, reading it now, I despair at the 50s cultural values, bland prose and repetitive tropes (someone gets caught in Dame Washalot's laundry water / looks in on the Angry Pixie with predictable results / eats a Toffee Shock and got a surprise), but the magical lands at the top of the tree utterly caught my imagination. They cropped up in my dreams, my writing and my pretend play. Like Oscar, I was less enamoured with the lands populated by tricksy characters or where the children faced peril. It was escapism and fantasy I was after, so it was the 'treat' lands I loved - the Land of Birthdays, the Land of Take-What-You-Want and their ilk. I adored Blyton's boarding school stories, too and I absolutely went to boarding school for my sixth form years as a direct result. Inexplicably, I did not have one midnight feast or play a single game of lacrosse. I did however get 'gated' and sneak to the pub. Would Darrell Rivers have approved? Sadly her scant characterisation offers no clues either way.
In middle childhood, there was an almost compulsive aspect to my reading. It occasionally got in the way of things, irritated those around me, caused me physical harm (cf. the lamp post incident). Even my weekly childhood library visits did not satiate me. Nevertheless, as I swung through the unfriendly security barrier and made a beeline for the children's section, I was in my happy place. I scanned the rows of books, often particularly on the look out for stories about witches or their familiars. Happily, this was a rich seam of children's literature in the 1980s and I discovered dozens of wonderful witchy books. What was their special appeal? Women with power? Women as "other"? Probably not. I think I enjoyed the simple possibility of magic and the dilemmas it invoked. I immersed myself in these stories. A small unspoken part of me wondered whether, if I applied myself, I might be a witch some day. It seemed possible. A secret magical lineage would explain a lot about me. I would role play witches. Not green-faced, cackling villainesses, but career witches, diligently applying themselves to potion-craft or spell-making.
One night I dreamed that a witch knocked on the window of my first floor bedroom window, waking me from sleep. She invited me to fly with her and I spent hours soaring and swooping in the night sky over my home town. I wanted to share the experience with Mum and persuaded the witch to return home to collect her. The following morning, I wasn't wholly convinced by her assertion that it must have been a dream, when I made some comments about our nighttime adventure. Looking back, despite my fierce imagination, this episode provides little clues to my pragmatism. The witch had a cat familiar, but it remained in a wicker hamper, securely belted to the rear of the broomstick. I clearly doubted the physical probability of a small cat hanging on to the vehicle as it swooped and tossed in the sky, and resolved this problem in my oneiric state.
The library bestowed upon me countless great books - "Tom's Midnight Garden", "Stig of the Dump", anything by Joan Aiken or Roald Dahl, "Charlotte's Web", "Little Women". Towards the end of my period as a heavy user of the library, I embarked on the final vestiges of the children's section - the Young Adult shelves. I had been eyeing these books for some time before I realised there was nothing stopping me from reading them. Seemingly without exception, they all had marvellously intriguing titles like "After the First Death", "Children of the Dust", "Catch You on the Flip Side" or "Slambash Wangs of a Compo Gormer". The characters in these books led me through new human dilemmas and moral grey areas. I discovered post-apocalyptic dystopias and stories without a happy ending.
When I had exhausted my "to read" pile and a library visit was days away, I dipped into my mum's books and read things like Irving's "Cider House Rules" and discovered adult life was just as complicated as I had begun to suspect.. I also remember picking up "Jonathan Livingstone Seagull" by Richard Bach, a bizarrely ubiquitous guide to the power of positive thinking from the 70s. Right now, it would be my book nemesis: self-helpy, religiously-themed. Not my thing at all. The message was delivered through an allegorical tale of a seagull whose passion for flight set him at odds with his community. It is neither well conceived or written and really has nothing to recommend it, but it was the book that introduced me to sub-text and allegory and metaphor (so thinly veiled was the Judeo-Christian lesson, that even a child could see through it), so it served a purpose.
In my early teens, I plucked "Love in the Time of Cholera" from my Mum's shelves and lost myself in Marquez' hot, visceral depiction of love - failing, in my adolescence, to see the anti-love story. I was hypnotised by the perfection of Marquez' opening sentence "It was inevitable: the scent of bitter almonds always reminded him of the fate of unrequited love" and would sometimes open the book simply to marvel at those 17 words**. I wrote the book up in my reading journal for English class. My teacher summoned me to her desk to kindly suggest I stick to including books I had actually read. She rather took back her accusation after I spent the next fifteen minutes enthusiastically espousing the merits of the book, a verbal onslaught no doubt accompanied by wild gesticulation.
At 'A' level, people seemed bewildered that I had taken English Literature - not least my English teacher, although he was more confused that I decided to pair his subject with Biology and Chemistry (most other adults considered English as the interloper). He was a gifted teacher, immensely passionate and knowledgeable about his subject. It oozed from him. No, not "oozed"...it radiated out. He unleashed it. He clearly relished being gatekeeper to all these marvellous texts and took the responsibility seriously. It was important to him that we understand and connected with these works. He was, by turns, relaxed to the point of somnolence or dramatic and mercurial. Books were swept off shelves. He would storm out. He would cry at prep left undone. Whether he was acting (another of his strengths) or experiencing mental strife, I can't say, but he certainly had our attention. We would enter the classroom trepidatiously, wondering who we were going to meet. He would sometimes talk for entire lessons, barely seeking a contribution from us, ranging over a topic, tangenting wildly. Sometimes he would be almost silent and we would talk, wondering if our words had any value. We learned, though. Through Pinter, John Clare, the Metaphysical Poets, we learned to take books and shake them until the ideas, rhythms and aesthetics fell out of them.
I often had my English teacher in mind when I read Donna Tartt's "The Secret History" of which I am an unashamed fan.
It features the arrival of Richard Papen, a rather bland transport from California, into an exclusive coterie of bright young Classics students, curated by their enigmatic teacher, Julian Morrow. The story works backwards from an accidental murder during an ill-conceived bacchanal. Some people love to hate on this book. It's one of those novels that people arrive at with high expectations, knowing that the book trails legions of cultishly devoted fans in its wake. I read the book when I was about 15 or 16, which is the perfect time to appreciate its brooding atmosphere, tainted with menace. It is a stylish read, with a superb cast of despicable, unlikeable characters and a tightly written murder mystery at its centre. I will happily concede that the book may be unsubstantial and lacking in heart, but it is voluptuous and compelling. Tartt's characters sprang to life in my head, fully-formed and I urgently needed everyone to read the book so I could talk about it with them. I rescued dog-eared copies from charity shops as if they were lost puppies and re-homed them on my shelves. If someone confessed that they hadn't read it, I would thrust one of my copies at them. The book is crying out to be made into a movie but despite the rights having been picked up a couple of times, it has never happened. I am strangely happy that the rights have reverted to Tartt and that she is hanging on to them. The chances of the movie being cast to my satisfaction seem slim, so this saves me some angst.
Just recently, Philip Pullman's latest revisitation to Lyra's universe, "The Book of Dust" has been released and in his promotional rounds, Pullman mentioned one of his favourite books "The Anatomy of Melancholy". I was overjoyed to see the title of this book in print, even more so in the context of an author whose work I have so enjoyed. I discovered a copy of this book in my late teens or early twenties. The curious title piqued my interest as I browsed in as a second hand book shop. I was not in the habit of picking up dark, dusty books and so I left it on the shelf, but I found myself circling back. I opened it and read a few pages and was amused to discover that the title was not a metaphor - the book was, indeed, a quite detailed examination of the state of melancholy. I bought it. I read it from cover to cover, excepting the large tracts of Latin. I have dipped in and out of it many times since. Pullman himself describes with far more eloquence than I could ever muster why this book is such an utter pleasure. It is the book that taught me to be a free and unfettered reader. Except for chick lit.
My reading habits changed dramatically after having children. The Kindle app on my phone became my window to the written word. I adore books as objects, but when the boys were tiny, my prime reading hour was 3am. In the dark, it was not possible to hold open a book while simultaneously attending to the surprising complexities of feeding a baby. A light to see the pages may have roused them from half-sleep. Reading on the phone was practical.
As a new mum, I was dangerously under-slept and shedding brain cells like bad cards, so the types of books I read changed, too. Pre-children, I mainly read contemporary fiction. Wonderful novels, that played with form, scrutinised human existence and luxuriated in language. My new reading conditions demanded something different. Books I could pick up and put down easily. Stories which could engage and divert my weary brain, without challenging it too much. I discovered the urban fantasy genre and cracked through the Ben Aaronovitch's "Rivers of London" series, Neil Gaiman's "Neverwhere", "Un Lun Dun" by China Miéville. These books delved below the surface of my city, imposing magical worlds just beneath the skin of London. They added to the otherworldly, dreamy feeling I felt as I endlessly pushed a buggy around my neighbourhood, slightly high on lack of sleep.
We currently have no room to hang pictures in our house because our walls are lined with bookshelves. The books are an archive, insulating our home. There is little current reading material on it. I estimate more that 90% of our book purchases are now digital. Ben still reads like the clappers but, since the boys have started sleeping through the night, I am reading a lot less. My day is a hodge-podge of moments, without the long stretches I need to get stuck into a book. And I do not know this "evening" of which people speak! I miss my quiet and constant papery friends. When we get our evenings back, I will resume my foremost pleasure immediately.
** I also began collecting opening lines that include a colon. To Marquez, we can add:
"The past is a foreign country: they do things differently there." -- L.P. Hartley's "The Go-Between"
"Marley was dead: to begin with." -- Charles Dicken's "A Christmas Carol"
I've never set much store by normality. It's a relative thing. A social construct built on shifting terrain. Once we have acquired the minimum skills required to function in society without endangering or hurting ourselves or others, it ceases to be a meaningful notion and is certainly not something we should aspire to. Even observing such cliched mantras as "Be true to yourself" will do you less harm. Some people are born feeling this, others learn it and some never do.
As a teenager, I found the quest for normality actively off-putting. My interest in any given musical artist was inversely proportional to its popularity, roughly-speaking. I was interested in counter-culture and largely unsusceptible to peer pressure. I was a cultural magpie, stealing little bits of what I liked from books, music and the arts. Socially, I regularly fell between two (or more) stalls and felt comfortable in the chasm. As an adult, I've come to realise that the slightly off-beat, "weird" kids at school are the ones to watch. They travel, they revolutionise, they have big, weird ideas and build companies out of them, they seem happier and more content. Sadly, I am as boring as other people's dreams - the exception that proves the rule. But Ben is not your average portfolio manager/playwright/neuroscientist, and so our family motto has become "everybody is somebody's weirdo" or, as Ben had engraved on his iPad, "everybody is somebody's wierdo", which surely only serves to reinforce the point. What is spelling if not convention*. Ben and I truthfully tell Spike that we love the way his brain works. We remind Oscar that "normal" is an illusion and that the cool kids question received ideas. At parents evening, a couple of weeks ago, more than one teacher said that Oscar "ploughed his own furrow" and was not influenced by his peers, which was unusual for his age group. I internally nodded my approval.
My little secret is that sometimes I want to be "normal". I know I am not alone in this amongst the SEN community. It takes effort to ignore the askance looks, the second looks, the outright staring that your child's slightly off-kilter behaviour attracts. On a night out, sometimes, it's nice to have a mental holiday and talk about culture or current affairs but you lack the determination to steer the conversation away from autism. Sometimes, I want to do things on a whim - take the children to the park without having to worry about whether I will manage on my own, go on holiday at short notice or drive past a tube station without having first checked TFL’s status reports.
On the flip side, sometimes we desperately want to tell you ALL about the latest instalment of the satanic soap opera that is the local authority's efforts to avoid providing a basic level of support for your child. Sometimes, when we are asked "How was your day?" or "How are you?", we want to cast aside the "fine" that is bubbling on our lips and actually tell you. Sometimes, we wish you could stand in our shoes for the meltdowns, for the perma-anxiety, for the soaring victories, so that you could just know without us telling you.
We'd like to take our seats for the school play and not be sat on the edge of a volcano of worry about whether the clapping will prompt a meltdown. We'd like to take our child to an extra-curricular activity without levels of planning akin to those required to set up a new sovereign state. We'd like to be presented with genuine choices about where and how our child should be educated and supported, rather than choosing the least worst option.
Being a SEN parent is undeniably ParentingPlus. It's child rearing on amphetamines. Everything is harder, faster, stronger but, sometimes, it's better, too. When I talk to other parents of autistic kids, there are recurring themes that characterise our experience. Some good, some bad.
When our children are babies and toddlers, our instincts guide us to be watchful and alert. Is your cruising child careening towards a sharp-cornered coffee table? Is that a marble clutched in their podgy fist?
The need for high levels of vigilance at this age is part and parcel of what makes caring for very young children so exhausting. But, of course, as time goes by your child becomes more independent and gradually learns how to keep themselves safe and you can reward yourself by drinking a cup of tea while it's still hot. When your child is autistic, that hot cup of tea can be a long time coming.
True hypervigilance, that state of heightened awareness about your surroundings, feeling constantly ready to fight or flee is commonly reported amongst parents of autistic children (and, of course, by autists, themselves). It comes as no surprise to read that our resting cortisol levels are similar to those of veteran soldiers.
The level of actual vigilance required will vary from family to family. For us, it is having one eye on Spike constantly when we are out of the home, as he can disappear like a magician performing a trick. Over the years, we have also developed a T1000-esque scanning ability. We can spot butterflies, dogs, fire alarms, closed train stations (but, sadly, not I.T. malfunctions) a mile off. We need to be on top of these things to keep Spike safe. There are also other lower key things which are important in different ways: being alert to ensure that Spike maintains his dignity, that his interactions in public are prosocial and looking out for signs of overstimulation.
Many SEN parents will have some shocker of a story relating to the difficulties involved in getting a good standard of support for their child. And so we must be vigilant when we meet with teachers, professionals involved in our child's care and with the local authority. But when you are repeatedly disappointed and let down by the people who are meant to be helping, it's easy to feel that stepping through the meeting room door, is akin to stepping on to the battlefield, with all the stress that entails. Vigilance becomes hypervigilance.
I'm particularly aware of how this state of hypervigilance must impact Oz. Fully engaging with him for a couple of minutes at a playground is nigh on impossible when I have to ensure that Spike is always in my peripheral vision. A small hiccup in Spike's schooling, therapy or support provision can turn up the heat on our mental stew of worries, rendering us distracted and jittery. These days, thanks to ABA and working immensely hard to understand the world from Spike's perspective, we don't live as defensively as we used to. We're lucky. It's very much an improving picture.
We've all heard the statement "Motherhood is the hardest job in the world". Lob those incendiary words at the Internet and watch them explode into a "mommy war". If I can take a semantic position, Motherhood is simply a state of being. It may be a privilege or you may regard it as a sacrifice. Perhaps you oscillate between the two depending on whether you have been able to wee uninterrupted on a given day. I would contend that it is not "job". Caregiving, on the other hand, most certainly is. If you work outside the home, and employ a nanny or childminder, you pay them to provide care for your child, not to be their mother.
Caring for very young children is hard work. It is relentless and monotonous. At times it demands every ounce of your physical and emotional energy. This is not to say that we would readily trade the experience and, when we choose or are required to delegate the care of our children, it is very often with some feelings of guilt. As our children grow older and become more independent, the intensity of caregiving is reduced or at least fundamentally altered into something less consuming.
This is the point of divergence for the parents of autistic children. Even when autism is not “severe” or paired with significant intellectual disability, the intensity of caregiving is likely to be higher for much longer and, possibly, indefinite. It’s undeniably challenging work. Sadly, in this country (and the world over, I suspect) carers are undervalued, underpaid and under-supported. Of course, giving care to your own child is tempered by rewards and pleasures. The same is true even when caregiving forms a large part of your parenting role. I liked that it gave me more opportunity for spending quality time with Spike. When he reached school age, Spike’s transition to full-time school was a slow one, and I valued that extra time with him. I got to know him better. We were more bonded and able to communicate with one another. Being the primary caregiver also means that when those milestones and developmental achievements occur, you are fully invested in them and they rock your world.
At heart, human beings are problem-solvers. And we're good at it. It has elevated us to the top of the evolutionary pile. But as we've cracked the big problems - food, shelter, fire - the problems we face have become less concrete and they are often embedded in complex systems over which we have limited control. As a result, worrying, the mechanism of sending a problem to the front of our minds, so that we know what needs fixing, becomes disordered more easily. We worry unnecessarily. SEN parents are as guilty of this as the next family, and it is rare to meet a SEN parent who does not have anxiety piggy-backing on those ever-present worries. But the scale and seriousness of the concerns will be different, and this can lead to a sense of perspective. We don't sweat the small stuff. We pick our battles. On the down-side, this can be alienating. Amongst fellow parents, it can be difficult to relate to gripes about small inadequacies at school, when you're concerned that your child might be being squeezed out of mainstream schooling, in breach of their legal rights**. The list of things I don't worry about any more is long.
This altered perspective also allows you to focus on the tiny joys, the little things that inspire happiness seemingly out of proportion to the event. A few words from your child which give you a momentary insight into their inner world. A milestone met. A moment of quiet companionship. Witnessing their unfiltered joy at seeing a Jubilee line train with the “correct” coloured poles.
Autism is a developmental disorder, which means that the typical timelines for child development are skewed - usually delayed. Parents of autistic kids, therefore, very quickly learn patience. Some milestones are a long time coming. Some will never come. Ideally, somewhere along the way we learn acceptance. We accept that our kids are on a different journey. This should not be confused with capitulation. Parents will know the potential of their child and you should see them fight for the opportunities their child deserves.
We also learn to be patient when interacting with our children. Autistic kids are vulnerable to overwhelm and adding your feelings of frustration to theirs is not going to lead to a successful outcome. Visual, auditory and sensory processing differences are more-or-less an autism standard. Our children need time to reconcile all this environmental input before they can respond. We learn to give them this time.
It’s not only our children who require our patience. I remember reading a book about autism where someone had interviewed the mother of autistic child and said something along the lines of “If I was a parent of a child with autism and saw the ignorance of people and the way in which some professionals make life for my child so difficult, I think I would kill someone!” The parent smiled and said “How many would you kill? Five, fifty, one hundred?”. Now, clearly there is hyperbole at play here, but you take the point. Frustration, exasperation, bewildering incompetence and apathy loom around every corner. SEN parents have to play the long game. A hair-trigger temper is not going to win your child more support.
Ben is super-naturally good at this. I’ve never met a more patient person. However, there is a certain cunning that underpins his patience. A natural game-theorist, he asks himself, “How can we win this?” and the answer is rarely an ill-timed rant on someone’s voicemail, however tempting that may be.
I think "Stupid Things I Have Cried at When Pregnant" is a common internet meme. Dissolving into tears as a result of a broadside from an Oxfam advert is probably a universal new mum experience. Sure, hormones probably have a lot to answer for but parenthood itself can have a significant impact on empathy***. The act of nurturing infants sparks increased sensitivity to others’ needs, which can result in kindness to others.
There is also solid research behind the idea that hardship breeds compassion. Now, Spike’s autistic neurology is not a “hardship” but the interface between your autistic child and the wider world creates tension, problems and stress. I, perhaps, should not have been surprised to find that SEN parents are some of the most solicitous, caring and empathetic individuals that I have met. In particular, the support they provide one another is a wonderful thing to behold.
On a personal level, having children certainly inspired increased levels of empathy (and respect) for my mother. I think most parents have probably experienced that “Thanks, Mum and Dad!” moment. It also made me more aware and attuned to children and other parents, generally, and the day-to-day complexities of their lives. I engaged in more charitable giving and other prosocial behaviours as a result. Having an autistic child, though, resulted in a huge increase in my feelings of empathy. Not just for children, or parents, or autistic children and their parents, but for anyone facing significant challenges. I see them and I look for ways to help. As a community, SEN parents just seem to get that everyone has their battles and, by and large, they treat people accordingly. By lumping myself in with this amazing group of parents, I am at risk of sounding like a little Mother Theresa-ish. The reality is that my internal landscape is completely undermined by the fact that I am a disorganised mess, so my good deeds are rather low-key.
Somehow, being a “proper adult” eludes me. I am currently wearing dungarees and eating sweets (although I’m also drinking wine, so…). But, our boys have helped me grow and improve in ways I never anticipated. That “sometimes” feeling never lasts long.
* If this somehow conveys that I have a laissez-faire attitude to spelling, I must admit the opposite is true. I am a terrible spelling pedant.
** Not our personal experience, but woefully common.
*** Not always in the way you would expect. Research show that some people experience a reduction in empathy. Preoccupation with their own infant and immediate family can diminish feelings of empathy for others. This is especially true in early infancy, where the single-point focus on the baby may ensure its survival, but sometimes apathy or antipathy to the plight of others persists beyond babyhood. I should add that I am not, at all, implying that empathy is a parental construct and that if you don’t have a kid you must be a sociopath. Some of my favourite (very compassionate) people don’t have children!
Want to read more? Feeling a long way from home.
It's easy to schlep to the same old parks and attractions, rather than risk the unknown. But we're getting a bit braver as a family, trying out new places that pique our interest. I am becoming more accepting of the fact that some days we'll find some great new place to add to our itinerary and sometimes, well - we won't.
Given that it can be difficult to engage Spike with activities that don't involve trains, we're always alert to diverting things to do that are near trains. This summer, we checked out Kentish Town City Farm, which is riven in two by train lines. Like many a bemused commuter, we have often spotted goats on the railway embankment steppe and I was keen to see this odd juxtaposition from the other side of the fence.
Regrettably, on the piercingly sunny day that we visited, the farm was a veritable kaleidoscope of butterflies (or gaudily-painted death bugs, as one of our party would have it). So very not-lovely for us. They were attracted by the beautiful, thriving community garden and allotments, which were achingly green and in full fruit and blossom. Poor Spike was in fight/flight so, needless to say, our visit was short. We marched from one end to the other as if under time trial conditions and then retreated to the safety of the Overground.
Neither boy is a rabid animal lover, although they both seemed to enjoy the incongruity of seeing livestock in such an urban setting. They also agreed that the pig was enormously fat, and the cow very stinky. Despite being only a narrow wedge, the farm's animal offering is not meagre: a couple of horses, a number of cheeky goats, free-ranging hens and ducks, a massive pig and black cow. I thought it was a bit of a shame that the animals were largely off-limits and there were many forbidding signs prohibiting any form of contact. In the spirit of my gratitude post, the stabled horses did seem to inspire some thread of equestrian curiosity in Spike, who has said he wants to ride a horse several times since. If I mention the farm to Spike now, he enthusiastically recalls seeing "a class 700 Thameslink train, a class 222 East Midlands train AND a class 378 Overground train!", so there is that.
While Spike and Oscar were terrified/underwhelmed, I was charmed by the place. It clearly works hard to provide enriching opportunities for local people, especially children. The allotments are incredibly well-looked after and there is a riding programme and a young farmers group. My impression is that it does rather better at this than it does as an attraction, which is fine.
Very much more successful, was our more recent visit to Camley Street Natural Park run by the London Wildlife Trust. This 2 acre site adjacent to the Regent's Canal and the multiple train lines terminating at King's Cross St. Pancras station is jam-packed with nature. Butterfly season has passed and the visit was unpunctuated by drama, bar Spike taking exception to Oz chucking a stick in the pond. An adult group hurried past us with semi-appalled looks and eyebrows gymnasticing, like they'd never seen two weary parents trying to contain a minor sibling skirmish next to a body of water. Things were turned around for Spike when he found a tall, straight stick and announced that he was "taking it home to put in my bedroom. If I get a bad leg, I'll have a stick!"
We pond-dipped a little and found some pond hog-lice. Further up the path we found their terrestrial brothers. Giant ones, in fact. Camley must be feeding them well. Oscar disturbed numerous black, sticky slugs. Unfortunately, the minibeast zone is closed at the weekends, to allow the ground to recover from the hoards of school trippers who trample through the place during the week. Spike and I also enjoyed sitting on the floating 'Viewpoint' (designed by Finnish architects, EOR) duck-spotting and watching narrow boats navigating the lock, a curiously compelling activity. If you don't know your coot, from your moorhen or mallard, then there are laminated cheat-sheets to pick up in the Visitor Centre.
As I stood watching Oscar clamber atop a huge pile of waste wood, it occurred to me that this was the kind of place that someone might have hidden a geocache. I cracked open the app, only to discover I was 5m from one. I'm clearly a natural cacher! The hunt was short, but we were rewarded with our biggest cache to date. I can't recommend geocaching enough, whether you have children or not. It's such a cool way to inject a little randomness and excitement into your day.
We will definitely return to Camley Street. Ordinarily, I think craft activities and other opportunities are available for visitors (there was a party in progress when we went). In the warmer months there is a cafe. We heard mutterings that the place will be closed for redevelopment of its buildings, next year, so do check their website before you visit.
The new development around King's Cross has created other cool, off-beat places to while away time, particularly as an adjunct to a journey to or from the nearby station. Gasholder Park is a lovely invention. The ironworks from Pancras Gasworks have been lovingly restored and repurposed into a green space consisting of a circular lawn and a polished steel pavilion. It is small, but the boys played here for more than hour, climbing on the iron buttresses, rolling down the grassy slopes and performing tricks with the mirrored surfaces of the colonnade.
It is a good spot to watch both the Eurostar hauling its cosmopolitan cargo of passengers out of St. Pancras, and the narrow boats on Regent's Canal. Spotting a boat named the "Arthur Dent" near enough made my day. I felt momentarily under-prepared without a towel on my person.
The boys also loved the deep astroturfed steps leading down to the canal at Coal Drops Yard. We watched the Mad-Hatter, a Mitch-from-Baywatch, a lady leopard and assorted others boarding a floating Halloween party, while the boys pinged up and down the steps, cartwheeling and parkouring until we needed refuelling. The steps make a great picnic spot, but we dodged the fountains and headed across Granary Square to Caravan, which do well by kids and adults (although we thought they were rather outshone by their Bankside counterpart).
This place will soon be overrun with tourists and consumers, as Thomas Heatherwick's plans for a shopping centre resolve into bricks and mortar. The teaser images of kissing gabled roofs look pleasingly inventive, particularly when compared with the rather drab, rectangular resident boxes that make up the majority of the local architecture. It's a shame the architectural innovation can't be put to a more wholesome use, but there is plenty to enjoy in this previously unloved corner of the inner city.
:: Blogtober is a blogging challenge whereby bloggers are encouraged to post every day for the month of October. Many of my post topics have been taken from suggestions by friends and family. In general, expect my posts to be shorter, more random and of inconsistent quality! ::
In her New York Times article, Cammie McGovern very eloquently and movingly describes her struggles with the process of securing provision and, ultimately, employment for her autistic son.
I have not become inured to setting out in plain words, the ways in which my child is not like other children.
When Spike was younger, detailing our concerns was quite a simple exercise, "He is not pointing. His words are not coming quick enough. He seems obsessed with fans." His eccentricities formed a collection of off-beat quirks, which belied the inherent seriousness of their presence or absence. As he got older, those differences fleshed out and took on weight. It takes longer to paint a picture in words of our autistic child, who perceives his peers as primarily a source of unwanted sensory disturbance, or who finds that his teacher's words turn from concrete, meaningful symbols to water as her language moves into a more sophisticated register. Detailing the many points of divergence between Spike's development and what is typically expected is an exercise running to many pages. We read them back to our selves, checking for balance and veracity. By our hand, these accounts are merely quick sketches of Spike, but we try very hard to be faithful to our boy, so that he is there, among the words. A bright, cheerful boy with passions and interests, a creative streak. A boy that requires a gentle, consistent, step-wise approach to teaching and to tolerating the perceived assaults of the modern world. A boy who needs a little more time and space, to process your words and expectations, and to recover when he is feels tossed in an audio-visual sea.
When we met with Spike's paediatrician for the first time, the words poured out of us like milk. We were grateful for a chance at certainty after months of carrying around this leaden question. "Is he autistic?". Diagnosis represented a rubber stamp on our passport, permitting us to go forward and get on with it. To move forward linearly, and not in circles. I do not know how many times since we have had to enumerate and qualify Spike's abilities and disabilities. Quite often, our words are taken up by a psychologist or paediatrician and translated into specific medical jargon. Uncertainty is stripped away. "Challenges" and "difficulties" become "deficits". The shape of your child's condition is sharply defined and, in vulnerable moments, it collides with how you thought things might be.
In the disability community and beyond, the idea that we should be focussing on strengths and not deficits is gaining sway. Research shows that, at least in certain contexts, deficit-based systems are ineffective compared to their strength-based counterparts. The use of a collaborative approach which focuses on the assets of an individual should increase resilience and independence. It also feels more humane and guards against conceptualising an individual in terms of their challenges. It's something woven deeply into the way we support Spike, so I am pleased that Britain's local authorities and support services are making steps towards a more progressive attitude. However, I am also concerned that there is a lack of resources to enable full engagement with and understanding of this quite different way of supporting our vulnerable citizens, and that people may suffer as a result.
The forms we complete to access local authority funding for Spike's therapy are a rather watered down version of a strength-based system. There is no real drilling down into how Spike's strengths can be sustained, developed or utilised to support him in areas that he finds more challenging. No one has the time or money for that. So, instead you are left with a rather hollow list which seems to serve the purpose of a patronising, patrician reminder that "it's not all doom and gloom". We don't need reminding of that. Spike is awesome! We are not wringing our hands at our fate. The strength-based system should also not mean that challenges are ignored, or struggles spun into strengths as an excuse to cut much-needed funding to families.
These review processes invariably conclude by looking to the future. What do we want for Spike? What do we see him doing? These questions feel impossible to answer. Ben and I have struggled with our inability to look very far ahead. Of course, no parent can be certain of what the future holds for their children. No matter what opportunities a child has, life is unpredictable and parents can only do the best they can with what they have. But when I consider Oscar, the future seems a bright place. A jumping off point to multiple paths. The possible futures diverge wildly from one another, but I see them. An autism diagnosis brings down a heavy cloud over those paths. They may exist, but sometimes seeing your own hand in front of you is the greater challenge.
Statistically speaking, most parents can expect that their child won't be President of the United States. They can also expect that their children will find employment and live independently, that they will have romantic relationships and be able to pursue their enthusiasms. Can we be certain of those things? Ok, we probably don't have a future President on our hands. Joking aside, in the UK, only 16% of autistic adults are in full-time employment. Only about 17% of young adults on the spectrum aged 21 to 25 have ever lived independently. That's a specific autism problem. Double the number of non-autistic, intellectually disabled people have lived independently at that age. That is tough reading for families with autistic children, and tougher still for the autistic adults living the experience.
When Spike was diagnosed with autism, we asked the paediatrician about what Spike's future might look like. He would not be drawn and I accepted that. Spike was 2.5 years old! And so I put off thinking about Spike's adulthood and the far, distant future. But the future is coming and prudent people plan for it, so we try and engage with these questions about where we see our boy. As children grow, all parents can pare away some of these hypothetical future paths. A line is drawn through "concert pianist", "fine artist" and "theoretical mathematician". I can see that the paring process for families like ours and McGovern's is more brutal.
While we face many similar challenges, we are not as far down the road as McGovern and Spike does not have the same level of learning disability. He is hard to pin down. Professionals describe his profile as "spiky" (how apt!), with areas of both great strength and challenge. Like many autistic kids, motivation and engagement are sometimes significant barriers to learning, but if he decides to learn something, well - he might be as able as the next kid, potentially more so. And so we are tantalised by the possibility of these paths. Which of them should we attend to? Thinking pragmatically, Spike's future is probably not going to follow a typical trajectory, but how far off the trajectory will it be? These are the questions which make planning for the future so difficult.
Humans have a strong need to be able to predict. If we can predict, we can control the variables and adjust for the optimum outcome. Some futurists have described a taxonomy of futures - the possible, the preferable and the probable. Ben and I spend a lot of time cycling between these taxons, making plans for the probable, sometimes struggling to fully commit lest we eliminate the possible. To as great an extent as possible, we must let Spike lead. I mean, of course we must. It's easy to lose sight of that though, when worrying about whether he could or should do GCSEs, or when trying to strike the right balance between traditional schooling, supporting his areas of need and just being a kid. What is preferable is that his future (and the future of all children regardless of the challenges they face) contains opportunities for him to be joyful and content. It is patently clear what makes Spike happy. In the end, we must guide him to show us the future he wants. We'll work as hard as we can to ensure that it is built on sturdy foundations. I cried mixed-up tears of I'm-not-sure-what-emotion as I read McGovern's concluding words, "Your future should look like the best parts of your present". Well, there's something wonderful for us all to aim for.
Want to read more? Where the future started.
:: Blogtober is a blogging challenge whereby bloggers are encouraged to post every day for the month of October. Many of my post topics have been taken from suggestions by friends and family. In general, expect my posts to be shorter, more random and of inconsistent quality! ::
I love a bit of forgotten infrastructure. Crumbling, abandoned railway stations. Disused rail tracks, succumbing to nature. Roads that stop abruptly, destination forgotten. The Mail Rail is a 6.5 mile stretch of narrow gauge railway running under London from Paddington to Whitechapel, incepted in 1927. For decades it ferried tons of mail for 22 hours a day. The economy of transporting mail by road did for the line in 2003, but rather than lapse into total disrepair, the Mail Rail was cared for by a team of three engineers who hoped that it would have it's day again. And so it has come to pass.
The Mail Rail has not been pressed into service, hauling sacks of mail from west to east and back again, but as an attraction at the Postal Museum in Mount Pleasant. A short loop of track and some refurbished, pod-ish cars have been opened up to visitors to the museum. We have been waiting, keenly, for a ride. Tickets have been very popular and I have since discovered we were lucky to secure ours. In response to disappointment over the scarcity of tickets, the Postal Museum has now made a few walk-up tickets available.
Our boys both operate slightly or very outside their comfort zones at school, which takes up a lot of energy. Consequently, they enjoy the simple pleasures of home, an idle train journey, a swim, our local parks. They don't always leap up and down with excitement at the prospect of an "adventure". Of course, Ben and I want them to have time to relax, but we also want to broaden their horizons and see what our amazing city has to offer. Sometimes there are vociferous objections to "horizon broadening". On the morning, we were faced with fairly low-level grumbling, so we pressed on.
We visited on a Sunday, arriving by car and were very pleased to discover no parking restrictions on the nearby streets. The main exhibition space of the museum has a gift shop and a smart cafe attached, operated by Benugo. We tanked up on coffee and cake, etc and then headed over the road to the main depot to catch the Mail Rail. While the public-facing areas have been thoroughly refurbished, it is all pleasingly industrial. The stairs open out onto a large subterranean exhibition space which also houses the platform and tunnels. The boys were excited by this point, all grumbles forgotten, both impatient to get on.
The diminutive rolling stock trundled alongside the platform and disgorged their passengers, who unfolded like origami. The pods are small. Good luck if you are over 6 foot. Undeterred, we deposited our bags in the lockers provided and squeezed ourselves into a carriage with 4 seats. This is narrow, narrow gauge, but the circuit is only 15 minutes and there will be plenty to divert your attention away from your confines.
A friendly voice booms out of the darkness, Ray, a former Mail Rail engineer. He narrates the journey, pointing out where the track strikes out away from the loop towards Liverpool Street. He takes us back in time, through the Mail Rail's decades of use. The walls of the abandoned platforms host engaging kid-friendly multimedia projections, providing more insight into the role of the Post Office railway. Along the way, cryptic operational signs and a dartboard left in place allude to the lives who kept the mail moving. It's not a wholly sanitised experience, which I enjoyed. The bare concrete, the musty smell, the pale and spindly, stalactites clinging to the ceiling of the tunnel help connect you with the industry that took place beneath the city streets for 76 years.
It's a rattling, clanking ride and, having been warned that it was loud, we took along ear defenders for our young riders and they appreciated them. It might be worth preparing very little ones, or sensitive sorts, that the black-out half-way through is a dramatic interlude and the light will return in half a minute.
We arrived back where we started, exhilarated. After disembarking, there is a further exhibition which sketches in more detail about the work of the railway, including some fun, interactive exhibits and an opportunity to climb into a boiler suit and hard hat. Back upstairs, the boys were keen to check out Sorted!, the play space for kids (including a thoughtful coffee station for the grown-ups - sadly closed on our visit). It's a bright, cheerful space and they've put some thought into it. Children can can weigh and sort parcels, dress as post men and women and collect and deliver post around the mini 2D and 3D town. I loved the post code scanner a little bit too much. I wonder if I missed my vocation.
After all this activity and excitement, we were done, and the autumn sunshine was calling. So, we'll have to go back to see the main Postal Museum exhibition as it seems there is plenty more to see. The museum is an 8 minute walk from the wonderful Coram's Fields, which was where we despatched ourselves too. 7 acres of climbing frames, sand pits, slides, open space and a handful of farm animals. A good antidote to being underground. And the Foundling Museum is just around the corner, if you wanted to make it a Two Museum Day.
Want to read more? Another fine thing we like to do in London.
:: Blogtober is a blogging challenge whereby bloggers are encouraged to post every day for the month of October. Many of my post topics have been taken from suggestions by friends and family. In general, expect my posts to be shorter, more random and of inconsistent quality! ::
Ben and I had a rare 15 minutes together without children this morning. We dropped off Spike at school and then grabbed a quick coffee. We don't get much of that. After a successful spell leaving the boys with a babysitter for the odd Friday night dinner together, the babysitter got busy and hasn't been available for a while. Finding a new one is not a straightforward task for reasons too mundane to go into here. Our evenings are long. A cross between a relay and an endurance event. Spike goes to bed incredibly late and Oscar still needs "support" to settle, so we operate in shifts to make sure we both get time to breathe. This means we do not get to relax together. The evening ends when Spike finally goes to sleep and the last adult standing can fall into bed. At weekends, the boys have very different ideas about how to spend their R&R time and, in the absence of forward-planning, we assign ourselves a child and take them to do the things they want to do. There's a definite lack of parent time and family time.
With a little time and energy, all these things could be improved. We could wean Oscar off his nocturnal parent dependency, we could bring Spike's bedtime forward to something less ridiculous (actually, the jury's out on that one), we could find a new baby sitter, we could make whole-family weekend plans. But "time and energy" are scarce resources. Today, after our coffee, Ben suggested we make it a Friday ritual. He is walking Good Idea Factory. Done! We're doing it. And so, magically, we will have at the very least, a weekly 15 minutes to check in with each other. In fact, we'll have more than that, because we have also timetabled in lunch on Mondays. A standing date.
Ben and I are both quite organised people in relation to certain specific areas of our lives (Ben more so than me), but very few of those areas are domestic. Without a shred of hyperbole, I can assure you that our house is Marie Kando's worst nightmare. This is a narrow view from my current sitting position. Extrapolate it across a standard two bedroom flat and you have a sense of what we live in. Also, please don't ask why we have 3 sets of headphones (we have 9).
I digress. Domestic disorganisation. Perhaps these little rituals are the way forward? Fifteen minutes is achievable, a manageable pocket of time and energy expenditure. By ritualising something important, you make a habit of it and ensure that you are cultivating your life values. It makes it easier not to follow the path of least resistance. I'm not speaking from experience, clearly, but it sounds right.
I have very few rituals in my life. I am the headless chicken, dashing hither and thither with an ill-defined sense of purpose. Life is a platform game in which I can only focus on the flaming log rolling toward me, as I pray it's not the boss level next. I make time for coffee, though. Lovely, lovely coffee.
I get up a full hour before anyone else. This is partly through more-or-less medical necessity. I have to eat breakfast in the morning. Immediately. Without it, I feel like a joint of ham. The night is way too long for my blood glucose homeostasis abilities. A less clinical need is the need to be alone while I de-ham. And my final requirement is coffee, which brings me fully online. This is our 'coffee station' in the kitchen. Note the semi-professional coffee machine (best money we ever spent) and the back-up coffee machine (important).
I am far from being the world's greatest barista, but our Rancilio Silvia does very nicely for me and I can turn out an acceptable cup of beverage with her. Silvia might as well be the fifth member of our family, so critical is she to our level of functioning and avoiding the foul side-effects of "kaffetørst"*. Thanks to a timer adapter, she is ready to serve at all the critical junctures. It is also my benchmark for drinking coffee outside of my home. Is it better than I can make at home? Or, as Bake-Off's Pru might say "Is it worth the caffeine?".
I have drunk coffee since my early teens, when my mum allowed me to drink milky Nescafe (or, knowing my mum, the more upmarket Gold Blend). But my rituals, then, were tea rituals. It was tea I drank in the morning, and when I needed a reviving brew. At college, it was tea and toast that filled the gaps left by studious avoidance of the boarding school slop served in the dining room. But I know exactly when the siren song of coffee guided me from the path of leaves to the temple of the bean. I was at the University of Durham, but the course I studied was based at their newfangled Stockton-on-Tees campus. Stockton was not exactly known for its cafe culture, so there was no revolution there. When I arrived in Stockton, it was difficult not to think that we Stocktonites had drawn the short straw when compared with our collegiate brethren, towning and gowning it up in Durham. I ended up being quite fond of Stockton but, having a little Ford Fiesta, I did take the opportunity to "escape" whenever I could - to the North Yorkshire Moors, to Newcastle to Durham and most frequently, to the little market town of Yarm which was nearby.
While me and my course mates were cooking each other appalling meals in halls or slumming it in slug-infested, freezing terraces, my friend Adam was ensconced in the luxury of his family home. I visited often and was always happy to take my shoes off at his place and sink my toes into his plush carpets and sit on a sofa that didn't feel like two crates covered in a blanket. It was here that I found coffee. Adam was clearly a hardened coffee drinker already by this point, and I distinctly remember him asking if I drank coffee. I said "not really", but he went ahead and made us a generous 8 cup cafetière of Hot Lava Java. We listened to music, chatted and drank coffee until the cafetière was empty. Then I bid him adieu in order to go and wrestle with a histopathology write-up, or some-such.
I hopped in Hugo (the aforementioned car) and set off back to Stockton. I had not gone far when little sparks of light whizzed and zimmed across my vision, making it hard to pay attention to the road. And then I noticed the tremors, subtle at first and then building in amplitude until they were unignorable. I appreciated that I probably wasn't safe to drive in this state, pulled over, and sat at the side of the road winking and twitching, and admiring my own personal firework show. It was love at first buzz.
Bar my regular coffees Chez Adam, I was not immediately set adrift on a river of brown bean juice. Stockton was more of a pints and parmas kind of place. I had to wait until I arrived in London to really kick start my caffeine addiction. If I was to stay awake for interminable Trust law lectures, coffee was a necessity. Once I started working for real, coffee was my stand-in for fresh air and sleep. My morning coffee ritual centred on Manon Café on Fleet Street who served only average coffee, but remembered my order and enticed me with their free Leonidas chocolate. My day sank or swam on whether that chocolate was a gianduja. In the months before I left, Hilliard opened just behind my office. They sold Union hand-roasted coffee and they made it well. The only hazard was their luscious alfajores, which I ate anyway when I was feeling lardy.
Now, I am rather more spoilt for good coffee. I generally make time for at least one coffee out a day, typically from my locals, Sally Clarke's, Golborne Deli, Egg Break or from The Grocer on Elgin. Chi-chi joints, the lot of them, which adds to the feeling that I am treating myself. When we visit my BFF's place, I try to get to Notes which is riding high in my caffeine chart. When I entered parental hibernation, London's coffee scene was burgeoning. 8 years later it seems to have peaked. Frankly, it's perfect timing. That means London is now saturated with lovely coffee place for me to go out and discover. While gentrification has done little for my local neighbourhood of Portobello, the ready availability of decent coffee is one happy side-effect.
I'm off to think about what other new rituals I need in my life.
* Norwegian for "coffeethirst"
I was travelling on the train with Spike last weekend and we sat opposite three young teenagers, perhaps 13 years old. As always when we travel by train, Spike was delighted to be there. He chatted to me constantly, asking questions and telling me facts about the stations we passed and the lines we travelled along. I love this Spike. Interactive. Engaged. Wanting to share his enthusiasm with me. His joy was palpable, evident in his excited bouncing, his slightly-too-loud voice and his frequent gasps of excitement.
The children opposite were sneaking looks and not quite managing to suppress their nervous giggles. They weren't being purposefully mean. I could see they were trying to be discreet, but couldn't quite help themselves. There was no adult nearby to explain what they were seeing and to shape their response. They were reacting to a perceived strangeness in my son. It made them uncomfortable.
I felt sad. Spike was, I think/hope, unaware of them. Too wrapped up in his journey that he waits all week for. I was sad because this discomfort is a precursor to fear. It erects barriers between the observer and the observed. Makes him other. Not one of us. Excludes him. I wanted to - was going to say something, but our stop was coming up and my brain decelerated along with the train. What could I have said? I'm still not entirely sure. My urge was to tell them him how brilliant he is, to let them know that his difference is not diminishing. He is not a half-person. In the end, I hugged him, laughed with him and told him how clever he was for knowing so many cool facts about trains. "See? My son is loved and loveable." A simple, "My son is autistic. He knows a lot about trains, doesn't he?!" would have given them a frame of reference which may have prompted a different, better response. It would also have conveyed that they had been observed, and that they should be more mindful of people's feelings. I will do better next time.
In the main, we don't encounter this sort of thing very often. Perhaps it is because we often pre-empt any concerns by letting people know Spike is autistic. We'll explain that they might, for example, need to make sure they have his whole attention before asking a question. I'm struggling to remember another incidence of unkindness (accidental or otherwise) right now. Isn't that wonderful? I do, though, recall the lovely people - the men and women who chose not to judge or fear. I remember the man who thanked Spike for reminding him to get off the train at his stop, and the man who told Spike that TFL would snap him up when he grows up. The numerous people who took the time to say what a lovely, happy boy Spike seemed. The woman that stopped her car and brought me a pillow from her back seat when Spike hurt himself and had a meltdown on the street. The station attendant who calmed Spike and helped keep him safe when he was acutely distressed and unable to hear us through the fog.
When you are young and autistic, unusual behaviours don't stand out as much and are often tolerated or dismissed. As he gets older, I am keenly aware that Spike is more conspicuous and that people's reactions may not always be so lovely. We are, of course, teaching Spike about social expectations, and how to regulate himself in public. But I think it's fair that we have different expectations for him depending on whether we are riding a week day tube, packed with quietly sullen commuters, versus a train filled with lively, lanyarded fans spilled out from Wembley. They were noisier, rowdier but, on that day, Spike still stood out. And I missed an opportunity to make the world better for him.
I do sometimes hesitate to convey Spike's diagnosis to strangers and take a more practical approach, explaining that he might need more time to respond or that he struggles with games that have complicated rules and will do better with a simple game of tag. This is partly because it is more effective and not everyone knows how to make accommodations for someone who is autistic. But it is also because, being less explicit avoids having to run the gamut of responses that the "autism" word provokes...
Don't pity my son. If you pity him, you assume he is suffering and unfortunate. He is a happy boy, with deep passions which bring him joy. He is surrounded by people who love him or hold him in deep affection. They are invested in his happiness. If you pity him, you are writing him off. You are implying that his life is a tragedy and that he cannot be successful (which is a subjective, not objective measure). Don't pity us, either. We have two amazing boys, we are privileged, educated people. We are lucky. Spike is well supported in a way thousands of autistic children in this country are not. Nothing about that warrants your pity.
Don't assume you know my son, because you "know" autism. My son is not autism. He is Spike! Human beings are are the most wonderfully sophisticated, complex organisms and we should take the time to get to know each other. When you meet a neurotypical person, you may make certain assumptions about them. I think we all know assumptions are a social short cut and to be avoided but, as humans we are more alike than different. Statistics and probability may see your assumptions borne out, more often than not. But you will come unstuck if you assume things about Spike. Not only is it impossible to map a neurotypical worldview onto Spike's, he is inconsistent - consistently so. You cannot even assume that what worked yesterday will work today. Instead, spend time with him, or speak to the people who know him well. Figure him out. Spike's silence does not mean he wants to be alone. His fidgeting and averted gaze does not always mean he is not listening. Some professionals who have worked with us have been guilty of this. To give them the benefit of the doubt, they may have been unable to go any deeper, too hamstrung by budget and caseload to look at what will help Spike, rather than Generic Child with Autism. Unless you are assuming a desire to be loved, heard and included, don't be presumptive, be curious.
If you fear my son, you make a monster of him. I have encountered adults who are scared of Spike. There are people who have been a part of his daily life, but find themselves too fearful to interact meaningfully with him. I don't blame those children on the train for being unsettled by Spike's idiosyncratic behaviour. I hope someone will teach them about autism. But adults have a responsibility to educate themselves (and their children). Knowledge defeats fear. He is a child. He will be a man. He deserves understanding.
Be curious! This is the best response to hearing about an autism diagnosis. I love it when people are curious about Spike because I have seen, first hand, the difference it makes to him. Children are often naturally curious and parents, fearing social embarrassment, can be too quick to suppress this natural desire to learn. Let them ask questions! Start a conversation yourself, if you can see your child is confused or anxious. Engage. It makes a tremendous difference to Spike if people ask how they can include him, how they can communicate better with him, what makes him tick. Spike is constantly, relentlessly pulled out of his comfort zone into the neurotypical world. When people take the time to meet him in the middle, it means he doesn't have to do all the work. He is a hard-working kid. In time, I hope he will be able to advocate for himself and tell people what accommodations he needs. Until then, help him out.
Want to read more? Unravelling my son's love of trains.
I have finally submitted the papers for Spike's EHCP transfer review (the process through which the local authority confirms Spike's level of need and makes provision for it - or not). The whole process is fairly stressful and very time-consuming and, if you want a better chance of a good outcome, it is also expensive. I'll write another time about my on-going despair at the uneven level of provision for children with additional needs. It's not only a post-code lottery, but weighted heavily in favour of those that can buy in professional expertise.
Anyway, Ben and I are trying to get our house in order, both literally and figuratively, so there is lots to do, and I don't have a solid chunk of the day in which to write. I really want to complete Blogtober with a clean (or rather - completely filled) sheet, so I am having to think creatively about what I want to share.
I haven't posted about my crafty pursuits much. Regrettably, I have not had much time to get stuck in. But I wanted to write about printing a little, specifically my little Print Gocco. I've had this machine for probably a decade or more and I adore it. It's a Japanese self-contained printing system. I can't remember when I first heard about it, but it was definitely an internet find. In Japan, they are widely known and considered a child's toy. For a time there was a craze for printing greeting cards at home and it's estimated that a third of Japanese homes had a Print Gocco. That is exceptionally high market penetration for a niche device. The saturated market combined with the fading popularity of the craze for printing cards, meant sales plummeted. While no longer popular as a toy, the device was picked up by the arts and crafts market but, by now, the parent company, Riso Kakagu Corporation (inventor of the Risograph) had seemingly lost interest in the product. There was a ready supply of Gocco machines available on eBay for about £40 and Riso were still supplying the consumables (printing screens, inks and bulbs). I snapped one up.
Compared to screen printing and other methods the Gocco is incredibly clean and fast. Essentially, all you need to do is prepare your artwork, place it on the printing bed, insert a screen into the printer and bulbs in the light box, and expose your screen which is done in a flash. Once the screen is exposed, you lift the stencil material, squeeze ink directly on to the exposed screen and replace the film. The screen is re-inserted into the printing machine along with your blank card or paper. Press down on the lid and -- *ta da!* You can then print over and over without having to re-ink.
I love making my own cards, but when I needed volume (for example, at Christmas or for our wedding) the Gocco was great. I've never had time to do anything ambitious with it, but detailed, multi-colour art prints are entirely possible (see here, here and here)
The arts and crafts community's enthusiasm for the machine led to the Save Gocco campaign, but Riso's head could not be turned and no new manufacturer emerged. Riso stopped making the consumables, so they became hard to come by and more and more expensive. I didn't use the machine for about a year and when I hit the internet to replenish my screens, ink and bulbs, I realised the end was nigh. Supplies were really only available, at great expense, from one or two suppliers in Australia and Japan, with eye-watering shipping costs.
I feel a little bereaved to think that my Gocco won't go on and on. I have managed to scrape together enough materials to produce maybe 10 more screens, but then my love affair will be over.
It's such a shame. The Gocco is a lovely, lo-fi little thing. The end-product is distinctive and quite sophisticated considering how quick and easy it is to print. Can someone please approach Riso for the IP or re-engineer the whole thing? I'm convinced a viable business could be made out of re-marketing it at the art and crafts community.
Here are a few things I printed on mine over the years.
Apolz for the terrible late night photos.
:: Blogtober is a blogging challenge whereby bloggers are encouraged to post every day for the month of October. My post topics have been taken from suggestions by friends and family. In general, expect my posts to be shorter, more random and of inconsistent quality! ::
There are several novels I have loved at different points in my life. They are books which have sustained me. Their themes and words and stories have circulated in my blood until they became part of the fabric of me. Those are not the books I mention when someone asks me about my favourite books.
If we tease apart "favourite" in this context, it probably means "most enjoyed". But I'm afraid I respond with the names of books I want people to read. I'm faintly interested in the fact that the two books I cite most frequently are non-fiction. That would not have been the case ten or fifteen years ago. I think it is not uncommon to read more non-fiction as we age. The more you know, the more you know you don't know.
Of course, "books I want people to read" and "books I have enjoyed", need not be mutually exclusive. But Primo Levi's "If This Is A Man" is not a book to be enjoyed. Written shortly after his return to Turin following 11 months of incarceration in Auschwitz, Levi's' book is one of our earliest accounts of the terrible inhumanities that took place there.
"If This is a Man" was not the first first-person account of the Holocaust that I read. Who could fail to be moved and horrified by any re-telling of the atrocities, but Levi's book is different. Unlike many accounts, Levi's has an immediacy and unsentimental quality which they lack. Levi had a simple aim: to be a witness to man's inhumanity to man. There is no "why" in this book, but rather an inquiry into what was done, and how some survived ("the saved") and some did not ("the drowned")*.
In the opening lines to the book, Levi refers to his "good fortune" in having been deported towards the end of the war, when conditions for prisoners had improved and lifespans extended. The notion of good fortune seems wildly incongruous in this context, but it is a theme which he returns to. In his depiction of camp life and the forensic unpicking of the characters around him, we see how some minute twist of luck can assign a person a chance of life beyond the wire.
Also notable, is the absence of the obvious. The brutality of the Nazis is not centre stage. Victimhood is absent, despite the operatic scale of the tragedy they were subjected to. Instead, Levi shines his light on the stubbornness, ingenuity, heroism and kindness of his fellow man.
It is difficult not to read the book in one sitting, although it is equally difficult not to pause and reflect on (and escape) the horror of it. This is a testament to Levi's writing, which is precise, engaging and humane. His narrative is clear-voiced and analytical, rich in detail and gentle in its handling of the precious lives in it.
More than anything, "If This Is A Man" is about the infinitesimal line between the drowned and the saved. He lived and, while the fact that he lived to bear witness would appear to be a testament to the unquenchable human spirit, it is also the opposite of that. Around him, human spirit was systematically annihilated. A lifetime later, in 1987, Levi committed suicide, falling from a third story apartment landing. In 1945 he was saved, but it seems there really was no escape.
What troubles me most about returning to this utterly necessary book is how needed it still is. It seems trite to pose the question, but has Theresa May read this book? Has Donald Trump? In his preface, Levi says, “Many people – many nations – can find themselves holding, more or less wittingly, that every stranger is an enemy". "If This Is A Man" follows that dangerous thought through to its logical conclusion.
“You who live safe
In your warm houses,
You who find warm food
And friendly faces when you return home.
Consider if this is a man
Who works in mud,
Who knows no peace,
Who fights for a crust of bread,
Who dies by a yes or no.
Consider if this is a woman
Without hair, without name,
Without the strength to remember,
Empty are her eyes, cold her womb,
Like a frog in winter.
Never forget that this has happened.
Remember these words.
Engrave them in your hearts,
When at home or in the street,
When lying down, when getting up.
Repeat them to your children.
Or may your houses be destroyed,
May illness strike you down,
May your offspring turn their faces from you.”
* Of the 650 Italian Jews who arrived in his transportation, Levi was one of only 20 to survive.
Want to read more? Cracking childish codes.
:: Blogtober is a blogging challenge whereby bloggers are encouraged to post every day for the month of October. My post topics have been taken from suggestions by friends and family. In general, expect my posts to be shorter, more random and of inconsistent quality! ::
Today, I am apocalyptically tired and our travelling family member has returned (yaay!), so I have out-sourced the blog to my sons. Please find the transcription below.
1. How old am I?
Spike. 38. [I'm 39 - just.]
Oscar. 38. [pauses] 98!! [laughs]
2. What makes me happy?
S. Steve pushing Alex into a TNT trap [a Minecraft reference].
Me. Is that what makes you happy?
S. Yes. It makes me laugh!
Me. What makes Mummy happy?
O. Your boys not getting hurt.
3. What makes me sad?
O. When your boys are playing rough and tumble and it gets a bit out of hand.
4. What is your favourite thing to do with me?
S. Go for trains.
O. Teach you how to play Minecraft.
5. What do I like doing?
6. What do I do when you're not around?
S. Go for trains.
7. What is my job?
S. To write things.
O. Focus Saturday Club and us!
8. What am I good at?
S. Taking me for trains.
9. What do you want to be when you are older?
S. Train designer.
O. A scientist, of course.
10. What scares you?
S. A loud train passing while I am on platform 2 at Harrow & Wealdstone station.
O. The Phoenix guinea pig!
11. Who is the worst person in the world?
S. No one.
O. Donald Trump.
12. What's the funniest thing you have seen?
S. The laughing bus stop!
O. "BIG FAT EGGY PUMPS!"
:: Blogtober is a blogging challenge whereby bloggers are encouraged to post every day for the month of October. My post topics have been taken from suggestions by friends and family. In general, expect my posts to be shorter, more random and of inconsistent quality! ::
This post was inspired by my far-away friend Amy who suggested that I write about "language and speech".
My brain runs a zillion times faster than my mouth. In the company of more than one person, I sometimes find it impossible to take my turn in the conversation. I see the gaps in conversational flow coming up, but my mouth does not open and the gaps whoosh by. I have something to say. I thought about it while you spoke. I don't feel uncertain about the worth of what I have to say. I don't, necessarily, feel too inhibited or shy to speak. My mouth is just too slow.
I listen to conversations at the school gate, hearing that distinctive pitter-patter as the conversational baton is passed around tight groups of mums. I marvel at the ease with which they observe the universally accepted response time and then chip in with their thought.
I must seem aloof. I've lost count of the conversations I have quietly sidled away from, having entirely failed to find the rhythm of the group. The feeling of standing with others, uncomfortably mute, is a familiar one.
In more formal situations, it is rarely a problem. In a training session, for example, there might be a group discussion and I find I can contribute easily. The social etiquette is different. There is probably someone chairing the conversation. But even if I am not directly asked to contribute, I can. I suspect those interlocutory pauses are longer. The parity of the group is important . People take care to maintain that parity through equitable distribution of opportunities to speak. So, perhaps, people pause a few milliseconds longer before chiming in, to ensure the prior speaker has completed their turn.
It must seem strange to these school gate acquaintances that I do not know very well. Particularly, as one-to-one, I really don't have this problem. I admit that when I am low on meaningful adult interaction, I do occasionally succumb to verbal barfing, "You asked how I am! I am going to TELL you!". Maybe they are confused when having had a perfectly ordinary chat one day, the next (in a larger group) I am no more than a bipedal clamshell. With arms.
I don't need vast amounts of social contact to function and feel good, but it sometimes feels like my head is full of words, buzzing around like angry wasps that can't get out. I think it's probably not an uncommon feeling amongst stay-at-home mums or people who work at home. I think it's why I have enjoyed writing here. I am releasing the words. Go! Fly! Be free! I'm barfing, again.
It may have roots in my deafness. I have had conductive hearing loss in both ears resulting from my cleft palate since forever. The loss is not severe and I get along fine. I have hearing aids, but I don't wear them. They do not offer a great level of correction (although it is possible I haven't persisted long enough to reeducate my brain). They're uncomfortable and clash with my glasses and they're a pain to look after. I know I should wear them. I do rely on speechreading a lot and have become over-reliant on it over the years. It has been suggested that auditory training might help, but I haven't had the time to pursue it.
When there is background noise, hearing clearly is quite difficult. I cannot hear Oscar when we walk on the street, and have to carry him or come down to his level to be able to catch everything he says. In bars and noisy venues, I feel incredibly reliant on speechreading and trying to follow a fast-moving, group conversation is very hard. While I can generally hear the adults at the school gates, perhaps I am just deskilled - my brain is unpractised at processing and responding at the required speeds. Note to self: look into auditory training.
We are a crazy, mixed up family, when it comes to speaking. So here I am, with my own issues. Oscar, on the other hand, is an Olympic-level talker. His vocabulary is ridiculous. I have become used to the look of confusion on adult faces when they see my diminutive, youngest son and hear him speak, "How old is he?". A couple of years ago, Oscar took part in some research at Birkbeck's Babylab, as parts of the BASIS project. At that time he had the vocabulary of an 8 year old. He's still only 5. At nursery this created some social challenges, because he had some difficulties relating to his peers. Happily, this problem has largely fallen away as he has entered primary school. He has that instinctive feel for vocabulary. He is able to infer meaning from context very readily and his memory latches on to new words like a steel trap. I can also report that Oscar has a very well-developed understanding of sarcasm and irony, and already deploys them, complete with huffy teenage sigh. He relishes idiomatic expressions ("Well, that's a recipe for disaster") and can often decode them independently.
At home, I find myself having to frequently and rapidly switch between two wildly different hats, depending on which child I am speaking to. Obviously, Spike's speech and language has developed rather slowly and haphazardly. While his linguistic skills are still emerging, they are not without their pleasures. Of course, his words are like prizes because they were hard-earned, and also because they provide insight into his idiosyncratic experience of the world. This morning, in the car, he exclaimed, "Mummy! Why do the butterflies and moths keep changing the months?!". A simple and weird sentence that requires a lot of unpacking. It is early October and Spike does not like it when the months change. Life can be over-stimulating and challenging for him. The constant mental updating required to keep place with an ever-changing world is exhausting for him. Sameness is a place of refuge. So, he is annoyed that it is suddenly October, when he had only just got used to it being September. I've written about Spike's butterfly and moth phobia before, but this association of an unwanted situation or occurrence with the fluttering fiends is typical of the type of connections his brain makes. He is connecting emotions, rather than looking at causality. He is saying, "When things changes, I feel unsettled and anxious". It takes a certain mental dexterity to get the root of what Spike says. He is, when taken at face value, an unreliable narrator of his own experience. But if you take the time to get to know him, it becomes easier to unpack what he is communicating. We then work on shaping that communication, so that the man on the street can more readily understand Spike's wants and needs and thoughts and feelings.
Another characteristic of Spike's speech is a preponderance of delayed echolalia or "scripting", which is the repetition of learned words and phrases some time after they have been heard and committed to memory. This can be meaningful and functional communication and Spike uses it in quite a subtle, nuanced way. Sometimes the phrase, or script contains the essence or feeling of what Spike wants to convey. People who don't know Spike well might miss the relevance of what he has said, or it may seem out of context. More often he uses scripting as a short cut. He will deploy someone else's words because it is quicker and easier than organically assembling his own response or contribution. In these cases, people generally understand him quite well or at least get the gist of what he is saying.
Spike also uses scripting for non-functional purposes, i.e. without communicative intent. He has a visceral relationship with words. Certain arrangements of them make him feel good and he will say them over and over to soothe or amuse himself. In the trade, they call it "stimming" or "self-stimulatory behaviour". Spike's verbal stims are usually train-based and very often a recitation of the stations on some rail route. These are generally idle habits, though. If he's stimming and you get his attention and ask him a question, he will answer it, so we don't usually try and stop his stims. They can also be beneficial, helping him decompress. Occasionally, when he is tired or very over-stimulated they can be a hindrance. There will be a racing, urgent quality to his bedtime stims. They will go on and on, and he will be unable to stop despite being exhausted.
Like the butterfly example, Spike's preoccupations often loom large in his language. When I picked him up from school today, he said, "Mummy, ask me 'Have you seen my hand dryer?'". I obliged and he responded,
"No. Why are you asking me.
I haven’t seen it.
I haven’t seen any hand dryers anywhere.
I would not steal a hand dryer.
Don’t ask me any more questions."
Fans of "I Want My Hat Back" will recognise the exchange. He often plays around with his scripts, bending and tweaking them to better fit his intentions. Spike's hand dryer phobia seems to be rearing its ugly head after a long period of quiescence. Little verbal descriptors of his anxiety are popping up everywhere. Scripting requires a good memory. I'm reasonably certain that Spike's is eidetic. At one point he could recall, in order, the two page Contents of his "Minecraft: Blockopedia" book. He knows the script of his favourite DVD in its entirety, learned from the ever-present subtitles (cf. my deafness). His memory is a huge asset but, like many autistic people, he is having to cognitively, rather than instinctively learn when and how to make use of his store of appropriate responses.
Spike has fun with words, too. Recently, I was conducting my usual post-school interrogation in the car. I asked him whether a particular thing had occurred "today or yesterday". He replied, but I didn't quite catch his response. "Did you say 'Yes, today' or 'yesterday'?", I asked. He was tickled by the similarity of the responses and the confusion they evoked, and chuckled about it for hours afterwards. He has a good sense of the absurd and likes odd juxtapositions of language.
It helps to have a high train threshold when conversing with Spike. I can talk about them all day if I need to, but we're doing a lot of work on his ability to accommodate other people's interests, and to broaden his own. In the meantime, I love my weird, mixed-up chats with him.
For completion, I should mention Ben. He's a good talker. A wordsmith, of course. He secret skill is getting people to do what he wants. Oops. Cat's out of the bag. Although, now I think about it, it's not really a language skill. He is able to use and apply his considerable reasoning abilities to emotional information, and people respond positively to that. Oh, and he can project. I do sometimes have to remind him he is in our living room and not on stage.
Want to read more? When life takes unexpected turns.
This post was inspired by Ben, and also by my friend Pippa who wanted to know what made me happy.
Ben has been thinking a lot about positive psychology, recently. There is a long, long list of qualities that I love about him, but the one I marvel at most often is his capacity to work at continually improving himself. He does not do this selfishly. He seeks, always, to understand the people, places and systems that surround him. And then he uses that knowledge to improve his relationships with people, and the projects and work he is involved in. We, his lucky family, and his friends, feel the benefit of this daily.
Ben has a first class degree in neuroscience, a fine understanding of global financial markets, a forensic knowledge of the biopharma and life sciences industry, and a surplus of creative talents. So, when I spotted books with titles like "How to be Happy", and when the likes of Oprah and Cheryl Sandberg start peppering our conversations, I raise an eyebrow. We are...an evidence-based kind of a family and pop psychology does not typically sit comfortably with us. Ben is the first to point out how a psychological principle has been watered down, or the research over-extrapolated, or correlation confused with causation. But, of course, "pop psychology" is not an exclusively pejorative term, it also includes scientifically-valid, psychological knowledge which is accessible to the general populace. It's easy to forget that amidst the polluted tide of left brain/right brain processes, cosmic ordering and other nonsense that washes around the internet.
Life is messy and complicated and ours feels particularly so, sometimes. We do keep our perspective and people who work with us to support Spike, say that we seem relaxed, which I am glad for. But it is sometimes, often, a projection. There are regular spells where we have our heads down and we are just fire-fighting. I rarely feel truly unhappy, but I often feel very stressed and it can be difficult to enjoy the ride when things are like that.
And so, Ben has been thinking about mental strength and positive psychology. Oprah and Cheryl have written and spoken a lot about gratitude and the role it can play in reducing stress, building social support and expanding social networks, and increasing reports of positive emotions, and it seems there is sturdy research behind it. Cultivating habits of gratitude can make you happier and more mentally resilient.
I find it fascinating that something that feels so essential, like human happiness, is as measurable as a pulse. We're just predictable bags of bones and goo. But isn't that reassuring?! I think so. And so, I am buying in. It feels good to be proactive about one's mental state, and so this blog is about what I was thankful for today.
* My favourite trousers (those ones up there ↑) were clean and ironed. These are essentially pyjamas that I can wear out of the house. LOVE them.
* The coffee 'thing' was clean this morning. The filter holder, I mean. I do not enjoy cleaning out coffee sludge at 6.15am and just sometimes, I am smart enough to clean it out the night before. Today was one of those days.
* Spike was not irritable today. He has had a run of being really quite crochety, but he was quite chipper this morning.
* When I opened the front door this morning, it was pouring with rain and the scent of sweet ozone swept into the hall. Oscar commented on it, and I got to tell him my favourite word, "petrichor". I explained that the word comes from "petra" meaning stone, and "ichor", the fluid which flows like blood in the veins of gods. This went down exactly as well as I hoped. I love his enthusiasm for words.
* Spike wanted his iPad in the car and managed to lift his heavy school bag, undo the zip and find the device. Things like this, which require bilateral coordination, are something he struggles with, but he did it! He was so happy with himself and I was pleased for him.
* Spike has been wanting to take pictures this week and today, in the car, he said "Look, Mummy! That bus stop is laughing! I need to take a picture." And so it was(!)
* On the school run this morning, the unfailingly grumpy street cleaner (fair play, mate) kindly indicated that I need to move back a little to be inside the lines of my parking bay.
* I received an exceptionally nice Twitter comment about one of my blog posts. Thank you to anyone who has said something nice about the blog. I've had some really supportive and encouraging feedback, and it means a lot. I'm finding writing very therapeutic and rewarding, but it's lovely to know that others sometimes find it interesting, or amusing, or diverting.
* This lovely, unexpected hit of violet.
* I met my friend Anna for coffee. She is an old/new friend. We studied interior design at Chelsea College of Art together nearly a decade ago, but did not really connect until recently when we discovered we were near neighbours. We are mothers now and share many interests. Anna is opening a cafe, Kale & Honey, virtually opposite the end of my road. Discussing the interior design, the coffee and the menu has been like brain food. Our meetings are an easy, simple pleasure. I'm sure I'll post about Anna and her lovely cafe again. It's going to be fabulous.
* I finished drafting the damn EHCP paperwork. It will need tweaks and revisions, but it's basically all there.
* I was reminded, for the nth time how brilliant, lovely, thoughtful and talented Spike's ABA tutors are. They are incredibly professional, but the clear affection and commitment they show to our boy...I couldn't ask for more.
* A flock of green parrots swooped over my car. I know they are considered a pest and an environmental problem but, come on! They're a cheerful crew on a drizzly day.
* We had nice family time after school today, well, as nice as it can be with Ben away. We've all been a bit out-of-sorts over the last couple of days, and I am still a bit frazzled. So we watched a movie, had a cheaty dinner (pasta and pizza). I chatted with Spike while he designed trains and helped Oscar with a little light dress-up (school uniform / sequinned leotard / Roman helmet) and face-painting.
I'm under-slept. I don't remember switching off my alarm, but I must have done. I narrowly avoided sleeping through the school run. Luckily, I was too tired to close the shutters properly last night, so the daylight prodded my eyelids and I woke up just a little late. Despite my brain fog, I have spent the entirety of the school day, and the day or two prior, writing a draft of Spike's Education, Health and Care Plan (EHCP). If you don't know what one of these is - LUCKY YOU. The amount of admin involved in securing the right support for children with extra needs can be overwhelming. And I used to be a professional form filler*. God knows what it must be like for someone who struggles with literacy, or who is already burning the candle at both ends. Thankfully, there are less of the endless appointments with this clinic, or that professional these days, but the paperwork is endless.
Anyway, the EHCP is still not finished and I proffer that as an excuse for the brevity of today's blog.
I took 10 minutes out of my day to watch the first episode of "Pablo" on CBeebies. It's a ten minute show, mixing live action and animation to tell the story of 5 year old Pablo, who is autistic. When things in real life makes him anxious or upset, he retreats into an animated world to process what is going on. I confess I emitted a little sigh when I heard there was going to be a whole series centring on an autistic character. Movies, TV and literature do not have a great track record when it comes to depicting autism. I'm struggling to think of any that have really worked for me, with the exception of the introduction of sweet Julia to "Sesame Street". Perhaps Julia was a sign that television for young children is the wellspring of positive change in this area.
So, "Pablo"? It's great! Really, really good. The series was developed with autistic consultants, and it shows. I have only seen the first episode, but the general thrust seems to be that Pablo encounters an everyday situation which he struggles with, and then enters an animated, illustrated world to try and unravel what is going on. In "The Purple Bird", Pablo and his mum get dressed up to go to a wedding, but the unusual clothes trigger "visual fragmentation". Pablo cannot see his mum as a whole, just the unusual purple details of her attire. Convinced that she has been replaced by a purple bird, Pablo seeks answers in Art World.
Art World is populated by some very sweet characters. I'm sure their specific personalities will develop as the series proceeds. There is Wren (an excitable and flappy bird), Mouse (an order-loving, shy mouse), Tang (a clumsy and boisterous orangutan), Draff (a knowledgable giraffe), Llama (an echolalic llama), and Noa (an anxious, green dinosaur). The animated characters are representations of certain facets of Pablo's personality, including his autistic traits. It's a stroke of genius and avoids a very common problem which arises when representing an autistic person. There is a phrase "If you’ve met one person with autism, you’ve met one person with autism." There are manifold ways that autism can present and by clearly defining one individual, you run the risk of excluding the experience of others. Ordinarily, painting a singular experience is a perfectly valid expression of whatever art form you are working in, but the autistic experience is so rarely shown, that it can become, unwittingly, representative of the whole (cf. "Rain Man"). By unknitting autism and allowing individual characters to pick up individual threads, the programme opens up. It becomes inclusive, instead of closing down the autistic experience to one narrow phenotype.
There were lots of little details that I loved and recognised. Mouse speaking in the third-person (pronoun confusion), Noa flushing the toilet and giggling (sensory seeking), Draff repeating "In point of fact" (scripting). It's all so humanely done, and with wit and creativity. The live action sequences are not as engaging as the illustrated world, but they seem a fair depiction of certain autistic experiences. I expect they were hamstrung more by budget than imagination. It rings true, at least.
Overall, I am quite content for Pablo to introduce autism to CBeebies' young audience. It's not perfect, but it's trying hard and succeeds on many fronts. I have a shelf full of crap "Your Friend is Autistic!"-type books which I wouldn't show to my dog (I don't have one). I am happy that "Pablo" is not crap at all. I like that is has chosen to focus on the experience of autism and, as a result does a solid job of providing genuine insight. In fact, it partners quite nicely with Sesame Street, which has taken a more "explainy" route with their autistic character.
They could have worked a bit harder on the dreary theme tune, though.
At the time of writing there are three episodes available to watch on BBC iPlayer.
This post was inspired by my friend Anna who wanted to read something about W12. I know this won't be 'your' W12, Anna, but I hope you find the post diverting :)
I was quite demanding in my early relationship with the W12 postcode. I'd rock up, tickets in hand, expecting to be entertained. The only three places I knew in the 'hood were the Shepherd's Bush Empire, the BBC and the Bush Theatre. All purveyors of cultural good times. In the early noughties, I got audience tickets for Joe Cornish's "This Week Only" at Television Centre. I laughed until my cheeks hurt and, for the first time, laid eyes on the curved bastion of my childhood televisual memories, BBC Television Centre. While we queued, I saw BBC staff with lanyards dangling from their necks and envied their being a moving part of this iconic flagship. In the bar, I did that thing where, try as you might, you can only keep one eye on your companion, while the other roves the room, half-expecting Andi Peters to saunter by.
Now, White City and Shepherd's Bush are my nearest neighbours. From my perspective in North Kensington, W12 begins on the whimsically named North Pole Road. Sadly, the road has not capitalised on its name and there is little to recommend it. There used to be a railway station there, until it was destroyed by fire in the Blitz. Southern, freight and Overground trains still thunder over the little bridge, along the old West London line. A year or so ago, I was driving along the road and I saw Oscar's head and eyes swivelling over his shoulder. He had just learned to read and had spotted the name of the road. "Hang on! Is this where Father Christmas lives?!".
On foot, BBC Television Centre is a short, drab journey along Wood Lane, past the nexus of roads feeding the Westway. This place feels blighted and grey, perhaps unable to creep from the shadow cast by the high prison walls of Wormwood Scrubs or the workhouses of the past. Despite this, I feel warmly connected to the place. My boys were born there, at Queen Charlotte's & Chelsea Hospital, one of the oldest maternity hospitals in Europe. It is a mercifully short 6 minute drive from my house. Things are changing, though. The earth under this north-eastern-most corner of W12 is in the throes of development. Television Centre was sold to property developers in 2012. Imperial College is establishing a whole new campus across the road. The Westfield behemoth is spreading northwards. The area feels in flux. In the meantime, there are small things to divert passers by.
This is the outskirts of W12. I only really came to know its heart when we set up Saturday Club there. I had cause to trawl up and down Uxbridge Road, marvelling at the Middle Eastern grocers with their cornucopias of cling-wrapped fruits, green-brown nuts, autumnal spices and pink slabs of Halal meat. I admired the handsome exterior of Bush Hall, wishing I had cause to peek inside at the Edwardian plasterwork and crystal chandeliers. I bustled along Goldhawk Road, in search of disposable coffee cups, discovering instead a textile mecca with rolls of silk and bolts of coloured cotton as far as the eye could see. If you look carefully, there are pleasingly odd juxtapositions and curiosities tucked away off the main drags.
Shepherd's Bush is not "lovely". It is green enough. The housing stock is solid and agreeable. The edible spoils of a diverse community are at hand. It thrums, vivid and lived in. But gentrification is at hand. As I write, neighbourhoods to the east of W12 have succumbed to the blandly, homogenising effects of the middle classes. In London, gentrification is seen as an inevitable tide resulting in social cleansing. Londoners by birthright and lower socioeconomic classes are being out-priced and displaced. It must and will be checked, though. If we squeeze out our nurses, our social workers, our street cleaners, surely London will not function? The Thin House, a converted 5-storey milliner's shop on Goldhawk Road, is one of my favourite buildings in the whole city. While I adore its slender form and love the bowler-hatted nod to its past in the retained shop front, I am also aware that it went on the market for over half-a-million pounds. So that's how much a literal sliver of bricks and mortar costs around here.
It feels like Shepherd's Bush is teetering on the brink. Good quality, affordable housing matched with thoughtful infrastructure will be the key to retaining the distinctive social character of the area. Time will tell whether the new developments and large-scale regeneration of Old Oak to the north will bring that. At least Shepherd's Bush Market, a glorious example of a 'local market for local people', has stood firm in the face of plans to develop the site. This sounds an optimistic note. Like the neighbourhood it resides in, the market is a lively, functioning multicultural melting pot. Saving it feels like saving Shepherd's Bush.
As I write, smart pockets have begun to pop up in W12. It is pleasing to be able to get great coffee from the independent coffee shops like Hummingbird Deli and Proud Mary's. The smart set has attracted the Ginger Pig and, despite its reputation as butcher to the affluent, it offers a range of well-reared meat at prices that are affordable and more fair to farmers. Any time I am near Askew Road, I will detour to October 26 (contender for best baker in London) and grab a loaf of whatever remains on the shelves.
I find myself on Askew Road more often than anywhere else in W12. It's a typical normcore Shepherd's Bush street (all mini-marts, launderettes and hardware shops) - but with sparkly bits. It's a functional kind of place where you can get a key cut and buy a Pyrex jug, but you can also buy a birthday present, or pick up good coffee in Detour. There is Icelandic soft-serve around the corner at Bears Ice Cream. I miss cake crafter, Cake Me Baby (strapline "Seriously, no Disney!") who have moved to purvey their heavenly valrhona-dipped almond cake pops elsewhere. Kite Studios and its cheerful be-buntinged frontage provides a warm heart to the place, offering community arts facilities. On the way home, I pass a number of Good Front Doors. And then there's always that sad old man, sitting in his very smart conservatory, day in, day out. Took me about 2 years to realise it was some sort of model or statue. All that wasted sympathy...
Want to read more? A special pocket of London.
This post was inspired by my friend Becky who suggested "The Language of Shoes".
It is possible that I have on occasion and by accident been fashionable. These desultory sartorial serendipities aside, I haven't been fashionable for years. Right now, I have - if I may lapse into 90s valleyspeak - literally no clue what it is I am meant to be wearing. I also very much don't care. I have reached that time of life where I have a manner of dressing which is comfortable and which does not appal me when I look in the mirror. And that is that.
Occasionally, I will get in a flap about clothes, and I hate flapping about clothes - because they're just CLOTHES. This usually happens when I have angered the laundry gods and find myself without one of my staples, or when I go out and feel an obligation to smarten up a bit, which creates angsty feelings. I sometimes think I like dressing up, but the reality is, when it comes to putting on a non-standard outfit, it's rare that I don't feel uncomfortable. Social events always cause me anxiety (unless I'm heading out with very good friends) so perhaps I have become conditioned to feel nervous when I don something new or a bit fancy. Dressing up has become tinged with awkwardness.
I don't ever recall feeling like I had nailed the zeitgeist with my clothing choices. At primary school in the 80s, when I wasn't really in charge of what I wore, girls would show up to parties in cycling shorts flashed with neon and matching outsize t-shirts. They wore make-up and tied their hair with nylon net bows, like mini-Madonnas. My mum (who is 100 times more stylish than me) always dressed me in modest, classic, preppy clothes. Looking at photos from the period, I look good! Thanks, Mum! But I remember yearning for some day-glo.
Like many British school children, I spent the best of the year in school uniform and I never minded. I think I was grateful for the simplicity of it. I didn't hoik my skirt up too high, or do weird things to my tie. I was never in a hurry to take it off when I got home. I'd lounge about in it, watching TV or doing my homework. I felt oddly secure in it. Ben tells me he would start peeling his uniform off as he walked through the door. I see Oscar takes after me. He's reluctant to go to the bother of changing when he comes in.
Shoes were the first part of "clothes" that I resolved. At first it was Doctor Martens (or DMs). I lived in them. On a summer's day, I'd pull on a t-shirt, a pretty peach, floral ankle-length skirt - and my DMs. My mum would look approvingly at me and then sigh as she spotted my clompy, black boots peeking out from my skirt. Right from the outset, they felt like "me". When men wolf-whistled from cars and building sites, I shrugged it off and imagined myself kicking them with my big, black boots. At the time, my music tastes ranged from Metallica and Slayer through to Megadeath and Anthrax, which is to say they remained solidly in 80s thrash metal. Peak adolescence. Heavy metal. Doctor Martens. Everything was in alignment.
And then I was handed a magical mix-tape by a middle-aged muso. I shifted gear as I discovered indie, grunge and alternative rock music. I bought my first pair of Converse. Cherry All Star Hi-Tops. This was the age I have remained subjectively, ever since, and Converse have remained as stable in my wardrobe as my sense of self (possibly, more so ). I first wore my Converse with combat trousers, band t-shirts and German army shirts, with some off-script concessions to my crafty impulses. The de rigueur slogans on my canvas army satchel were painstakingly embroidered on, rather than scrawled with biro. I made the marbled buttons on my shirt from Fimo.
I'm not sure the two items of clothing I choose each day amounts to a "look", but I haven't moved on from that utilitarian approach. In the last couple of years, I've wondered whether I might grow out of Converse. I'm not talking about whether I should wear them (who cares about that?), but whether I might feel too old for them at some point. And then I remember my 80 year old neighbour who still strides out in his bottle green Converse. He looks COOL. I like to think I'll still have timeless and comfortable feet if I make it that far.
Want to read more? Who am I really?
This post was inspired by my Dad who suggested "Pets".
We are a petless household. Autocorrect just asked me if I meant "peerless". Ha! No. Definitely not that. We have no fuzzy, feathered or scaled creatures to heap love and care upon. This has been mainly a pragmatic decision as family life has been quite complicated to date. Throwing another dependent into the mix would have seemed rash.
I also sense that I am not amongst real animal lovers, here. No one nags me for a puppy each and every birthday and Christmas. If they did with any sincerity, frankly, it would be a slam dunk. "Hello, dog/cat/whatever!" With the notable exception of Spike and his arch-nemeses, the fluttering fiends, the boys and Ben don't dislike animals, but they are mainly indifferent. Neither Spike nor Oscar has ever been a very enthusiastic zoo visitor. If you ask them what their favourite animal is, they struggle to answer, as if you had asked them what their favourite brand of toothpaste was.
Our closest animal encounters to date have been with cats. A very persistent neighbourhood ginger tabby inveigled his way into our home on multiple occasions, a few years back. He was old, painfully thin and seemed in search of food, companionship and a folded towel to sleep on. After the first couple of visits, I put a paper collar on him and sent him back out into the streets. I got a call later that day from our next-door neighbour to say he, "Sly", was hers. Bloody London.
Sly was ancient and quite poorly. His owner was out a lot, and happy that we could offer him respite. So he took refuge with us a lot and, at the end of the day, we'd scoop him up and carry him next door. Dear Sly. He was so tolerant of the interest the boys took in him. He'd been around the block (literally, having lived with about 3 different families nearby) and was happy to be stroked the wrong way, accepted experimental tail tugs and was unfazed when he found himself eyeball-to-eyeball with a 4 year old. Despite his frail state, Sly was a devious food thief but, as he was on a special diet, we became practised at spotting his white and ginger paws appearing over the table top.
Our timeshare didn't last long because Sly's health quickly deteriorated and his owner had to have him put to sleep. We were all sad. He was well-known locally, and a memorial was posted on our neighbour's garden wall. The boys gathered and laid flowers, along with pictures they had drawn of Sly.
My BFF is a cat lady. At one point, it seemed that each time I visited her she had acquired another - I think she topped out at five, or maybe 6? She took her cat mother responsibilities very seriously and even managed to train her smartest cat to use the toilet. Honestly, this woman. She can do anything she sets her mind to. These days she applies her considerable talents to larger-scale, creative projects and bringing up my wonderful ungodchildren, but the memory of her cat using the loo reminds me of her capacity for excellence. Since, then she has down-sized her cat family to three, primarily because her partner, poor man, was heinously allergic. I'm happy to say a combinations of drugs and exposure seems to have made their co-habitation viable. We cat-sit most August bank holidays when they travel and we run away from the chaos of the Notting Hill Carnival. Spike spends his time stalking the cats and asking me to "tsk, tsk" so he can pet them. I spend my time clearing up protest poos and neuroticising about their whereabouts (they're house cats and I'm worried they will escape). After a day or two having cats around, I miss them when we go.
My first animal friends were fish. I had an unhappy goldfish or two in a small plastic bowl, who keeled over after a short innings - probably from boredom. I expect the highpoint of their day was watching me eat dinner at the breakfast bar, poor things. After this standard fairground goldfish set-up, we graduated to a proper tank. I sensed these were happier fish and I felt more connected to them. My favourites were a Koi carp, orange with white cheeks, called Yo-Yo (acknowledging his frequent rapid ascents and descents of the tank), and a tiny shimmering tench called Squiddly-Diddly (because he was). Squiddly was not your typical tank fare. We had caught him on a fishing trip, having initially mistaken the piscine scrap for a piece of weed. I feel bad now, for yanking him out of his lovely big pond and slish-sloshing him home in a Bejam bag. They were loved and well-cared for, though, until we woke one morning to find a sodden oval of carpet, and the fish nervously back-and-forthing in half a tank of water. They were re-located to a friend's pond, which seemed a suitable reward for the pleasure they had given us.
A number of years later, we acquired a gerbil. It belonged to a friend of mine whose family ran a business from home. I think the gerbil's nerves had been shredded by constant, over-enthusiastic cage-bothering. It was frenzied and aggressive and I felt sorry for it. Its owners obviously did, too, and suggested he might be happier with us. So we took Honey home.
Honey, or "Rambo" as he was sometimes known, was allowed to live peacefully. I kept the cage clean, his food varied and nourishing, and discouraged him from gnawing the bars of the cage by keeping him well-stocked with toilet rolls. For a long time, Honey embodied a rodent Jekyll and Hyde, occasionally allowing me to run my fingers between his ears and down his back; sometimes launching himself at me, all horrow show fangs. I grew used to having a gerbil hanging off my finger by his teeth. Eventually, his cortisol levels returned to something approaching normal. In the evenings, we would close all the doors in our corridor and let Honey run around, knowing we could get him back in his cage without having to make a blood sacrifice . He lived for ages, to the point that I would peer into his cage, daily, thinking "Is he dead, yet?". He never was. We had him for 4 and a half years before a huge growth on his ear compelled us to do the kind thing.
The animals that meant the most to me weren't mine; they belonged to my paternal grandparents. But they were very much my childhood pals. There was Fred, a Bassett/Beagle cross who was cheerful and dopey. Ceefur* occupied the position of elder statesman cat. Cat siblings, Benson and Kizzy, were like feline yin and yang: Benson, an affectionate fluff ball, and Kizzy, tetchy and aloof. They also had a rabbit called Arfur* and Elvis, a budgie (which surely died out as species in the mid-80s, as I've not seen one since).
Fred and Benson were my favourites. If you provided a lap Benson would be on it, purring deeply, shedding handfuls of black hair and dribble on you. Fred and I would jostle for position in front of the open fire, and then think better of our victories when sparks popped out. He had the most textbook, doggy "woof" and he was inexplicably terrified of the sea urchin carapaces that my grandparents collected. I tried (and failed) to resist the temptation of teasing him with them. Like Sly, he was prepared to suffer a thousand indignities in the name of love (see main photo). He got his revenge though: he was a terrible farter. I loved him so much.
Occasionally, Spike announces that he wants a very specific cat called Jasper, but the next week he will be adamant that he most certainly does not want a pet. Oscar wants a wolf.
So we will remain petless. For now.
* "C for cat", "R for rabbit" !
Want to read more? Sheds and busy hands.
I've just realised that I don't know what a "gyratory system" is. I Googled it but the mystery remains unsolved. I'm reasonably certain it's not a pole-dancing move. The phrase has formed part of my lexicon since I was a child, when I lived close to The Largest Inhabited Roundabout in Europe except, as certain pedants were wont to tell me, "it's not a roundabout, it's a gyratory system". What's the difference? It is, though, award-winning, having previously held the title of Roundabout of the Year, bestowed by the "Roundabout Appreciation Society" - someone should tell them it's a gyratory system. I suspect they liked it because people live on it, and it's home to a pub. Although, maybe the pun-filled banners of the shed/outbuilding retailer opposite made them well-disposed towards it (think "Now is the Winter of our Discount Sheds" and "Rudolph the Shed Nose Reindeer").
When I was little, I passed many happy hours in the middle of the - I'm going to stick with "roundabout". My best friend, Benjamin Bunny, lived on it (a real boy). We baked rock cakes and learned about the Egyptians at the same tiny infant school up the road. Our single mums were both no-nonsense nurses and great friends. For a couple of years we were content to have only each other at our birthday celebrations, which fell in the same month. I don't think I really processed that he lived on the roundabout at the time. It was a short walk down the Slippery Hill, (barely navigable if there had been a frost), through the subway and up onto the island, but the geography of the place was obscured by our subterranean approach. His house was old and the grounds were heavily wooded. The house seemed full of life. Benjamin's brothers and sisters were quite a bit older than him and were some of the first teenagers I knew. They seemed exotic and unknowable. I enjoyed catching sight of them and delighted on the rare occasions they gave me their attention. When I was older, in the sultry, summer months I would meander down the stony lane outside his house. Follow it for long enough and you will arrive at a cave where once upon a time lived a witch. Local folklore would have us believe that she loaned utensils out to the townspeople, but one day the Devil arrived and stole her cauldron. She chased him and he leaped away from her, carving sandstone hills with his cloven feet as he fell back to earth.
All this was in contrast to the housing estate I lived on, which was a rather dull cul-de-sac. Our flat was blandly modern, but built before developers became stingy with square footage and window size. It was light and airy and our neighbours dressed up the common parts with potted plants and net curtains. We lived at the bottom of the "sac". Behind us was a beautiful 17th century mill. A spring fed the mill pond, and all around it grew a small, lush riperian wood. The trees ran alongside our estate and were known simply as "The Woods". We were all forbidden to go there by our parents, probably because of the large A-road that it backed on to, although we imagined more creative, disturbing reasons for the ban. I was fascinated with the place. I especially liked it in the winter when stagnant patches of bog formed. I pretended so hard that they were minor tributaries of the Swamp of Sadness*, that a cold lump of fear would rise in my throat as I navigated them. We rolled fallen logs across the swamps so we could move around without getting our shoes dirty (a sure sign that we had flouted the parental prohibition). The accessible parts of The Wood were young and the trees small with narrow, supple trunks - no good for climbing. It wasn't really a place we engaged with physically, except to stumble around in there. The attraction was the ambience of the place. A setting for the tall tales we told each other, fuelled by the swamps, gloom, pages torn from adult magazines (how delightfully retro!) and subtly shifting tree-scape.
There was a small buffer between our flats and the mill behind, a clearing occupied by a low brick and stone cottage with a slate roof. A couple lived there. They were younger than I am now, tall, kind and interesting. I struck up an unlikely friendship with them. I don't recall how we connected initially, but they lived very close by and I was quite happy and confident talking to adults. I imagine I spotted them doing something interesting on one of my hair-raising scurries down the Slippery Hill. I am quite sure the relationship wouldn't have developed if I hadn't been an only child.
I don't think anyone is surprised when they hear that I am an only child. I fit quite well into the typically described characteristics of "onlies". Socially self-conscious? Check. Self-critical? Check. Prefers the company of a few close friends? Yes. Strong-willed? Yes. Uncomfortable with conflict? Oh yes. I hope no one believes the stereotype of only children being brattish and spoilt these days. I think the much more interesting psychological phenomenon around only children is in relation to the impact it has on the underlying personality type. As an introvert, if I wanted friends and social interaction, which I did, I had to take on the mantle of an extrovert, inserting myself into groups. With children my own age, this often meant I lead things as that was simpler than engaging with the wider group social dynamic. I was quite practised at this. It probably explains why a few feathers were ruffled when I ascended the hierarchy so rapidly at Brownies and Guides (the glamour! The fame!). This was after overcoming my distaste at having to promise to "Love my God", as I was already a serial prayer refusenik at my C of E school. As an adult, I'm afraid I have found more satisfaction in being delegated to and doing that job well, which probably explains why I am not a Leader Among (Wo)men, despite my early aptitude. Getting back to my point, I imagine extroverts have the problem in reverse. Being only children, they have to learn to be alone when there is no one to play with.
Being with adults was less complicated. The couple in the cottage did not have children of their own, which I paid no mind to at the time. They had a lovely dog, though, and they were potterers, like me. Always busy with a little project, or looking after their house and garden. They brewed things, they made jam, they talked to me about the things which interested them. They lifted fallen leaves in the garden to show me a tawny, spiky hedgehog curled up beneath. Did I mention they had a sheep? It probably wasn't called "Dolly", although perhaps it was? It escaped regularly and I would charge down Piggy Lane after it and try and herd it back to the cottage. I was going through my awkward phase, a pre-teen. After several happy years in my own bubble, I was emerging from it and re-assessing my place in the world. My teeth were all over the shop. The girls around me were at peak cliqueness. The boys still only interested in boy pursuits, whatever they were. This would all change imminently, but this grown-up pair helped me over the hump.
As I entered my teen years, I ventured further away from home. My time was taken up with long, intense conversations with friends (on a stuck phone - imagine!) and hours listening to esoteric grunge bands in friends' bedrooms. I gradually stopped visiting the couple. I received occasional updates from my mum. They had babies! And then, very quickly, he was widowed - cancer, I think. I was sorry not to have been able to tell them both how much I enjoyed their company.
I didn't care two figs about not having brothers or sisters. I had good friendships and I was close to my mum. That was enough. Long hours playing by myself had resulted in a barely contained imagination. I would play intricate, episodic games of 'hospital' with my stuffed toys, or spend an entire day working on what can only be called an interpretive dance to Mike Oldfield's "Moonlight Shadow". I dreamt crazily vivid, epic dreams, sometimes having trouble distinguishing them from reality. Witches loomed particularly large in my imagination, as "Meg and Mog" primed and released me into the fantasy worlds of "The Worst Witch", "Carbonel", "Gobbolino the Witch's Cat", "Witch Week". Oh, the reading! I would read feverishly for hours and hours. My mum and I walked to the library each week and I would choose my allocation of six books. I would barely lift my eyes from the print until every book was finished, and then I would have to wait impatiently until the following week's visit rolled round**. The library's reading stock turned over fairly slowly, and before too long, I had read most of the children's section and was finding the adult section a little hit-and-miss.
Occasionally, I jeopardised my real world relationships as I tested the limits of what was socially acceptable. I found out the hard way that reading while walking blindly to school with a friend, constantly tripping and cutting her up was not appreciated. I stopped reading in the street entirely when I walked into a lamppost in the middle of town, knocking myself to the ground.
Although being an only child was probably very formative, it was never something I dwelt on. When people acquire this little nugget of personal data about me an interesting micro expression often flits across their faces. I'm never quite sure what it conveys. "So tragic!", "So weird!", "So lucky!", "I'm completely re-evaluating my opinion of you based on this tiny shred of information". I think about it more now, mainly because I married a fellow 'only'. We are raising brothers. Is there an evening class for this? How do we make them like each other? Is it even possible? When do we intervene? When one is narked at the other? When both are narked with each other? When one is standing on the other's head?
In the end, perhaps our lack of preconceived ideas about what siblinghood should look like saved us some stress, as Spike and Oscar's relationship evolved step by step. Oscar has been endlessly patient, accepting his limited access to his brother's internal world. The typical birth order dynamics have been turned upside down. I can trust that Oscar will stand safely out of harm's way, when his brother bolts in the street. When everything gets too much for Spike, Oscar will instinctively know to pull back and let Ben and I re-establish the equilibrium. He bears a weight of responsibility on his tiny shoulders. But his patience and gentle but tenacious approach have paid off. The boys' relationship has never been characterised by conflict, they accommodate and give way to each other like they do for no one else. Very gradually, companionship sprouted like a persistent plant on bare earth.
More recently, it has been apparent that the threads that connect them are knitting together, forming something warmer and more sustaining. When Oscar performs experiments with a flame, Spike is alarmed on his brother's behalf "I don't want Oscar to be on fire! I don't want only 3 people in our family!". When Oscar is upset, you can bet that Spike will be first in line to offer an enveloping hug. What started life as a practical means to diminish an unwanted racket, has developed into a demonstration of genuine concern and empathy. And when Spike is overwhelmed, Oscar will run silently to gather Spike's juice and bring it to him. They rough and tumble with each other and play chase. They laugh together at underage dog rescuers, saving the hopeless, hapless adult residents of a certain incident-strewn seaside town.
They will be friends, I know it.
* The deadly swamp which swallowed up Artax, Atreyu's horse, in "The Neverending Story"
** I have fond memories of collecting the badges that libraries used to hand out to children and was delighted to find this selection online.
Want to read more? Speak softly, but carry a stick of chalk