Connecting trains

Puzzling over Isaac’s future is a hazardous pursuit. It’s not just envisioning him in a socialised yet unforgiving world, a contradictory place of competition and compassion, which can set me off course for a day. Keeping a grip on reality has also meant putting any hopes and dreams on hold.

Actually, those abstract – seemingly starting in utero – educational aspirations, and their accompanying agonies of catchment areas and private schools, never became more than that: abstract. Before abating to absolute non-existence as autism and its challenges took over (schooling becomes an obsession of course but for very different reasons). 


Much tougher to shake off have been the softer dreams that smooth the childhood journey. Like the first best friend, sleepovers, magic shows, dressing up, leaps of imagination, signs of independence. And overwhelmingly, that bastion of father son bonding, football.


Pre-Isaac I’d been pretty sure that I’d have a little boy who, like me, loved the game, and specifically, Crystal Palace Football Club. It’s good old-fashioned dad fodder. Taking a son to watch his (and your) heroes is a wonderful part of our country’s DNA. Surely it would be in my DNA too.


For now though I have to live with the truth that football and Isaac are not ideally suited. Playing will play havoc with his hypo sensitivity and permanent off balance sensibility; not to mention his currently clumsy coordination. Rules that are frequently flounced and fairly flexible will collide horribly with his rigid system – however developed it becomes. Teamwork as a concept for his age group is in its infancy, but still he would miss its rudiments of complex social cues, reciprocity, instinct and competitiveness risking him being a misfit.


Watching football demands fluid sensory capabilities, a stark contrast to his see-and-hear-all take on the world. Successfully spectating involves real time visual editing of looking this way and that, from periphery to centre stage, in and out of focus, blurring, ignoring, focusing again. In the full and frenzied nature of a football match, the difficulty he’ll have deciphering means his coping mechanism of singular repetitive behaviour would be the only remedy. All this explains why the presence of any football in his vicinity has been a little bewildering and pretty much blocked out.


And although individually surmountable, he could well crumble under the combined effects of a live game such as the crowds, lights, noise, stewards shepherding us about, unpredictability, flowing narrative, oscillating moods, partisanship, nuanced comment. Why do patterns of play always change; why aren’t outcomes identical? Altogether an avalanche of autism un-friendly attributes. So the heralded visit to first game with my son is perhaps the last thing I’d contemplate.


Which means I have to currently live with this clipped dream. Contentedly it has to be said when compared to the distress I’d put him in by seeking some sort of paternal utopia. The dream is indeed on hold. But I’m not too bereft.



Anyway, we have trains. Our very own father, son pastime.

Isaac would happily live his entire life on a train. At times he’ll go through days and weeks as if permanently on the Jubilee line with a twin recital of pitch perfect engine sounds and station names, and it can be difficult getting him to alight. Except to an ipad for some blasts of YouTube clips of filmed tube journeys.


It’s not too difficult to see why tube trains satisfy the not-very-enquiring mind. Identical length journeys. Predictable destinations. Regularity. For the sensory seeker, they also provide the manna of moving lights, same sounds and perpetual motion; things Isaac replicates when not on a tube train by deftly but ferociously flapping his blue flannel inches from his eyes.


Travelling on and watching tube trains have therefore always featured in Isaac’s life. Starting as some sort of sedative, the only location that would still his troubled soul, they have evolved to be something much more. Because whilst Isaac may not have been ready for my ritual of watching football, I made myself readily available for his ritual of train journeys. 


They have become a fully-fledged, regular joint activity that has facilitated conversation and learning, allowed new experiences to be introduced, offered me a glimmer of his considerable memory (with the side-effect of me glowing with delight). They have also enabled him to be downright, deliriously happy.


Our almost weekly trips around the London Underground have cultivated a cause-and-effect dependency and neatly developed it into a something deeper and more meaningful. Our bond was born on the Bakerloo line and has blossomed throughout the entire London Underground network and its multiple journeys and destinations. It’s highly possible that with every train connection we experience together, we connect more.


Somewhat unsurprisingly, once we accomplished our first 3 hour round trip from Kensal Green, his expectation was to do it identically the next time.  From watching three red trains heading for Elephant and Castle and at least one orange train for Euston, before urgently and enthusiastically boarding the next one. As well as cracking into crackers at Euston, waiting for Harrow and Wealdstone for milk, and then hovering at Kensal Green to witness one last southbound train. The minute detail and order he recalls is fundamental to the experience and fascinating to behold.  And not only do I need to follow him as I invariably forget facts, I must treat it with respect too as he rapidly gets concerned if it wavers in any way.


Of course, this craving of repetition and routine could compromise his learning. Subsequent trips playing out exactly the same with no discoveries or new dialogue between us. But whilst any visit to Kensal Green is pretty much limited to the journey described, there’s nothing to stop us starting at different destinations and stretching his seeming limitless capacity to remember, absorb and repeat back.


We have five or six trips now. Each mutually exclusive from one another.


The gospel at Gospel Oak? “Sandwich with yellow cheese please. Let’s get off and go to Barking, daddy.”


What to do at Dollis Hill? “Quick, quick, we must get on and go to Westminster. I love the Jubilee line daddy.  Daddy, can we cross the train bridge and see the big wheel? …Lift me up, lift me up! This is such fun!”


Then there’s Brondsbury Park, Golders Green…you get the picture. The scripts for each journey unique, thorough and painstakingly thought through.


There is room to embrace new things. Once he has the solid foundations in place, windows of opportunity for adding a detour to the trip are rare but do exist. This became clear on the amble from Westminster to Waterloo, where passing a café I suggested we could sit in and eat some chocolate buttons. He was open to it, sat down, shared some bread with me and that became a fixed part of that trip. Bringing Isaac to a café, to sit and have a meal is difficult and challenging. On the rehearsed journey from Dollis Hill to Waterloo via Westminster and the train bridge, it’s become a doddle; in fact it absolutely has to happen.


It’s all part of a (self-explanatory) process called bar coding; which is how he processes and recalls events. It sheds more light on his mind, which in turn empowers us.


There is a parallel with the father son football bond just witnessing his wide eyed elation and sharing it with me. I feel he’ll never tire of appearing to discover seeing a “train, train….Daddy, the train for Elephant and Castle is coming. We’re not getting on!” Or observing happenings during the trip with the poise and particularity of, well, a train announcer. “The driver’s speaking. Tell mummy, we heard the driver speaking…let’s tell mummy!” (Of course different drivers speaking at different times could be incendiary. But admirably he’s started to accept minor deviations in his life like this; something I’m extraordinarily impressed by him achieving and my wife for teaching).


Also, the tube map has become our football stickers; pouring over it, recognising points, querying each other about what’s where. An affirmation of his burgeoning photographic memory.


I abhor the autism-for-all, we’re all on the spectrum, school of (lazy) thought. But appreciating his way of thinking has accessed a systemised sense to my cognition that, delightfully, provides quite a substitute to the paraphernalia, information based adoration football allows.


I’m proud of Isaac for his proficiency for what some would deem prosaic but I see as full of purpose. Often on a train he’ll stop me in his tracks with his exhaustive delivery of all the stations, in order, on a whole line. And when one of those stations is Crystal Palace, I do let myself dream – one day, maybe one day. Not for now though. There are trains to catch.

A New Kind Of Holiday

This article originally appeared on www.enablemagazine.com  

 
This year we took a holiday from holidays, so to speak. It was at times arduous (mainly for my wife Eliza), relentless and repetitive. But it was also as relaxing as it could be and reassuringly routine for our son Isaac, who has autism. And that was all that mattered. 
 
LOSING BATTLE 
 
Since Isaac was born, my relationship with holidays has been fractious. A trip to a peaceful Mediterranean resort a few months before his diagnosis reached the pinnacle of distress for him and despair for us. What we know now – that routine is his oxygen, his thinking rigid, and he’s never a second away from sensory overload – means we were fighting a losing battle daily. 
 
It rips my heart out how we were (unknowingly) letting him down. From forceful shepherding through maddening airports, to inconsistent mealtimes, to improvising the day’s events, to a need for armbands in the pool. 
 
But out of the chaos came the calm of successive UK-based holidays. Where mapping out the journey right down to the service station visited, meant Isaac knew what, where and when, and was a delight and delighted as a result. Photos of the cottage before we got there, his favourite books, specific foods. We’ve had an all-out autism-friendly couple of holidays. 
 
BREAKTHROUGH 
 
And then, last year – a big bold breakthrough. Engineered and orchestrated by my wife, we ventured on to a plane to a little house we knew in a cosy complex with a swimming pool. Despite Isaac being able to learn and speak in his own way and express himself better all the time, he and we are very much governed by autism. So meticulous planning was absolutely critical with visual cards navigating us through the hardest bit: the airport with all its twists and turns. 
 
He knew we were going “in an aeroplane, in the sky, to somewhere hot”. He could “splash about with pants and a jacket” (an inflatable one). He’d have all his books and DVDs and food with us. 
 
NO SURPRISE 
 
My wife’s preparation meant minimal surprise and small but consistent rewards led to a successful experience. A half hour – allowed for in the schedule – going up and down the escalators, provided sensory relief for him. On the plane, he actually enjoyed the turbulence which confirmed how topsy-turvy his balance and physical being is. It was a liberating and lovely holiday. 
 
We stayed put this year. Isaac was fine with it – he doesn’t seek adventure, escape from the norm. His holiday was blissful as he went on the tube every day, printed pictures, and was thrilled that days were panning out as planned. He also got to kiss his new baby sister Tabitha every day, which was enough change for him to deal with for one summer.