Bubbles

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.