Family dynamics

Tabitha, Isaac’s sister, recently turned one – to a cringey chorus of proudly cooing parents. A mother and father whose propensity for a more phlegmatic parenting profile had shrivelled ever so slightly. Overly emotional and overwhelmed as we were by what thousands of other babies up and down the land would be doing identically.

Crawling with intent, reaching and grabbing, interrogating for a micro second, disrupting, waving, waving back, indiscriminately squishing fresh vegetable, fruits, pasta bakes – you name it – and making great ceremony by sticking them firmly and forcibly in her mouth, and the surrounding areas of cheeks, eyes and hair. Wanting to use a spoon for goodness sake. And, diametrically opposed to a sizeable smattering of responsible and committed dads, a mini-behaviour that comforts me considerably: the pointing of the remote to commence an episode of Peppa Pig. Cause and effect – tick.
Tabitha’s interactions, instinctive learning and determination for independence, contrast harshly with Isaac at one. Viewing this behaviour is as soothing as witnessing Isaac’s atypical behaviour was agitating. So when we paused to briefly take stock and analyse Tabitha at one, we allowed ourselves to take some much deserved pleasure in our little girl’s developments. A brief pit stop in sentimentality-soaked mummy and daddy land if you like.

Hesitancy holds us back most of the time though. If only because I’m not quite sure what emotion to access when pondering her typicality. Joy? Relief? Guilt at being joyful or relieved? Sad for Isaac? Happy for her?

None of the above in unreconstructed form. Isaac is Isaac. Unimaginable in anything other than his irresistible, incandescent, intriguing form. Autism is part of him. Seeped into his whole being, his psyche, his sensibility. Tabitha seems to be jolly and moving in a healthy and straightforward manner. A kind of contentment is about as close as I can get to emotional quantification.
Anyway, there’s not a great deal of headspace for pointlessly monitoring a sibling of a child with autism. Not when occupying us, testing us and at times defeating us, is Isaac’s role in all this. His place within this small, nuclear family. Made all the more vivid for him since Tabitha has started roaming unpredictably around the house. How we behave and interact as a family has become a quandary that I fear will never expire. Despite a great, enduring love between Isaac and Tabitha.
It’s not that ‘family time’ is something I imagine conjures up sepia images of blissful harmony for most people. It’s just that with autism, the concept of quality family time is an odd one. Pulled as so many of us are by convention to deliver memories that demonstrate a beautiful unity – when in reality the accomplishment of such magic is hopelessly unobtainable.

Our experiences with wider family have been instructive here. Ours is a big, boisterous, effortlessly loving brood. Idealistic and inclusive, with kids of similar ages sparring, socialising, discovering. For typical young families who thrive in a spontaneous, soulful and healthy environment, one couldn’t wish for anything more.

A thread of unambiguous visceral love runs through the amorphous ensemble. Bonds, mutual, respect and instinct – traits not associated with autism at all – the spine that solidifies any hiccups, misunderstandings or mischief. Which has made Isaac’s position all the more precarious for him and, equally, me. The social challenges of Isaac’s autism are often the ones that marginalise him the most. And amplify over time, confounding us all. Despite both the kids and adults being (incredibly) well-versed in autism, the natural social forums of family life are a bafflement for Isaac no matter the extent of endeavour by all to integrate him.

 

So I’ve come to terms with being absentees at get togethers. Why would we put Isaac through it? Him desperately trying to block out the sensory hell of noise and conversation he can’t decipher. And despite his cousins knowing the reasons behind his removal and supposed special treatment, there must be thoughts that this is some sort of mutinous behaviour by him.  How can they not ogle at his oddness – of, for example, his current coping mechanism doing ‘train’, where he relives, exactly and exuberantly, a plethora of train journeys loudly to himself; sounds, announcements, the lot; the accuracy, as ever, extraordinary. Normal, urgent behaviour to extrapolate himself from the surrounding madness. Where he sees madness, others see normality. And vice versa. A chasm.

But over recent weeks and months our immediate family has become a microcosm of the wider one. With all the hullabaloo of free flowing family life that our slightly solitary existence had managed to avoid, having entered our four walls. At a time when many areas of Isaac’s life are similarly anxiety inducing, calling for a flexibility he cannot fathom.

His shear physical force around Tabitha is one manifestation. Hugging, hysterics, squeezing of her. He’ll show perfect ‘baby’ behaviour, no allowances made for his bigger age and height, aping quite brilliantly her movements and gestures, so collapse is tantalisingly close. Perhaps like twins? Double trouble, an ebullient double act. Our fear for her littleness is massive of course. There’s risk everywhere. And yet, we can count on one hand the number of times he’s made her cry. Her resilience to his repetitive teasing, snatching of toys and overzealous tickling is uncanny. Maybe she knows malice is non-existent. But he’s a force around her that needs containing. And what’s around the corner?

Belongings are in peril always. Hers of course. He’s adopted an obsession with peppa pig, books, DVDs, magazines – hoarding, cataloguing. As always with the capricious nature of autism, he’ll sink into silence and the security of his phone, tube maps, leaflets, and an almost eerie calm at any moment – which fails to never put me on edge a little.

I don’t doubt a strand of jealousy. And I appreciate the keenness by so many to stress that Isaac must be showing jealousy; how normal it is and, indeed, isn’t it rather reassuring it must be the reason for his wayward, difficult to control behaviour. Well, yes. But it is a whole lot more complex than that.

As is so often, explanation, survival strategies and lateral solutions have emanated from the people of BOAT (Brent Outreach Autism Team) who doubted the jealousy argument choosing instead to discuss the arrival of a knockabout, crawling, messy, clumsy, unpredictable, presence, that test all parents and siblings alike – but who have the tools to manage. He doesn’t.

And then there is all the other parts of his life contributing to the melee. Tabitha is one cog of a complicated wheel that risks running him over if we don’t navigate it competently and coherently.

As such, BOAT looked for problems elsewhere. Like his experiences at daily school lunch; a break from the nicely regimented school day. An echoey, cluttered bundle. When his teaching assistant is stretched. Kids run amok. He stims, flaps and seeks solace. But it’s a façade that crumbles on his return home, my wife left to pick up the pieces.

It is clear his shifts in defiant, dictating behaviour, ferocity of frustration, anger and not knowing his own strength, come from a simple place that Tabitha can trigger, or school lunch, or family outings, or unexpected visitors, or pretty much anything when the day’s minute-by-minute planning has not been executed meticulously. Which is chaos, disorder, noise – any deviation from the absolute known. Any coping he has done in public is camouflaging internal insecurities and agonies brought on by sensory-processing difficulties, his non-grasping of social language, or, mainly, a lack of order. A need for pure reason and logic perhaps – his lifeblood in scant supply.

And after any event – at which the stress for him could have been imperceptible for anyone else – when he sets about recharging his battered batteries, carnage can ensue. A state of autism-induced frenzy. Rage, sadness, insecurity. His autistic traits reaching a fever pitch that we cannot douse. Rituals are rife. His routine having taken such a bashing, he’ll fixate on a memory, something specific, so desperate he is to control his environment. 

Perhaps on the journey home from a supposed innocuous park visit. Roads are a latest obsession. He is showing a black taxi like knowledge of journeys. Each, though, once completed needs to be completedidentically. Road works, a shortcut, diversions – can be critical. Scripted responses firmly and dogmatically directed by him are demanded.

 “We’ll travel on Minster Road – looks like Westminster on the jubilee like train. What does it look like daddy? Say Westminster. Then after Minster Road, Cricklewood Broadway. What line is it, is it the Over ground. Say yes, of course…”

Monologues delivered in a heightened state, where if you don’t play your part or follow the instructions he may scream, become agitated, freak out and become impossible to do anything with other than restrain and hug. If I get the specific reason a bus is not in service (“because the driver has gone home for his tea, daddy – say it”) wrong, then there’s thunder.

(He can rattle off 10, 20, 30 road names in perfect sequence to describe a journey. Together with the name of the borough that, I hadn’t even noticed, appears on all road signs. Likewise he knows from memory the entire tube map, which line each station is on. Yet, when asked he may not answer if he doesn’t feel like it. Even, or especially, to parents wanting to show off his skills. The sense of reward that we may feel imparting knowledge, a foreign concept to him).

Rituals proliferate just to relax him; having the opposite effect on us. Cooking with my wife thrice daily at least, making mini trilogies of videos of preparing specific items at specific times. Then watching them back repeatedly, memorizing and collating. Needing textures of all the foods to be the same, consistencies for stirring identical. Then there’s the journeys to the same shopping centre, set of escalators, coffee shop visited, stuff ordered, books bought, conversations had. All tightly, forcibly adhered to; an iron grip on us. Repeated behaviours that become magnified to epic, end-of-tether for us, end-of-the-world for him, proportions.

One small step that’s yielding, for now, some small gains in coping mechanisms is him doing half days at school as suggested by BOAT. The effect on my wife in terms of childcare is clearly arduous as is the exhaustion she experiences tending to his ever need, focusing on him solely – help from our part-time nanny taking Tabitha but rarely both kids such are his demands. The good news is he’s fortified confidence wise. Less likely to be knocked sideways by his inability make it through the day unscathed and not too discombobulated from proceedings. The acuteness of his autism doesn’t abate though. And of course Tabitha is around anyway.

Weeks on and he’s still confirming “Not lunch today at school?” And only recently did he tell us that at lunchtime there are “too many children in the playground. I didn’t like the noise.”

Many days, my wife has to simply claw her way through catastrophe to get to even keel.

Real life like can be real agony for him, and us, with its irregularity, impossible-to-tune-out noise and lack of structure. It’s that stark, simple and unfair. A hatred of the haphazard. “Give me some space please!!” he can plead. He has an inbred inflexibility that so, so limits what he can do.

And the upshot? A segregated, slightly sad family life. Where my wife and I split duties of a weekend and during holidays. Like ships, with one child on board, passing in the night. That way, Isaac has a 100% focus, him calling the shots. Rituals and repetition running the show, but with slightly less intensity. A tiny bit easier to manage.

It’s where we’re stuck, albeit consciously. Our family we cherish, living a limited to stop it becoming an impossible chore. Now, as we tread water between him attending the new school where we’re confident he’ll have the intervention needed. Where we anticipate a new dimension to his life – where less distractions mean his feats of memories, his humour, his extraordinary capacity to learn, communicate and more are coaxed and cajoled, not compromised.

We cower for insularity for self-preservation’s sake not selfishness. I personally get tangled taming the sorrow of solitude with the desire to grasp the nettle of sociability – knowing the stings can be more than skin deep.

It needs a doggedness that I’ve not developed. It can feel like we are two islands within an island some weekends. That’s fine for now. We’re still the proud parents of two children going about our business – just slightly apart. For now.

 

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.