A Grand Day Out

This article originally appeared on Enable Magazine

Family days out should be dreamy affairs, not the stuff of nightmares. But with the autism-unfriendly attributes of spontaneity, crowds, noise and the unexpected staples of any trip or mission, going anywhere can be a high wire act.

Which means when venturing out, seeking sameness becomes a priority. With Isaac’s default setting being the solace of repetition, uniformity and no surprises, train trips are a regular outing. Tube trains to be specific.
Positive side
The structured map, identical carriages and sounds, and general order and logic play to his linear mind. I don’t quell his exuberance for the arrival of a train because it’s a genuine expression of joy. I do feel a sense of tedium during journeys that can be for hours at a time, but this is balanced by a positivity.
The whole tube map seems to appear in his mind’s eye, each station, line and colour, a kaleidoscope he lives and breathes. And as a platform for dealing with change – however minor – trains provide a useful tool. He can  manage delays and lines temporarily suspended as they make sense in his safe and completely comprehensible world. Just about.
However, forever catching trains means missing out on other, perhaps more constructive, days out. Which is why I’m grateful for two recent conventional days out that managed to align the often mutually exclusive child-friendly and autism-friendly features.
Sense of ease
Our first successful foray was to The Science Museum for a special morning for children on the autistic spectrum. It was a wondrous few hours. Roaming free in the sensitively lit crucible to discovery, Isaac could interact or  detract at his will.
It meant he could expend energy riding in the lift, loudly read stories and displays, and not queue to play with exhibits. The sense of ease, lack of crowds and noise, plus having the space to be, all contributed to a stimulating morning.
Then a few weeks ago was the annual day for children with autism supported by our borough. It’s as much the peace of mind knowing boundaries are minimal, people are understanding and sensory overload is less likely. In the fluid environment of a modern well-equipped children’s centre, there was a healthy mix of organised fun, relaxation areas, and, critically, autism professionals to diffuse or cajole. Managing to cover me in paints and liquids and goodness knows what, Isaac received hoots of laughter as opposed to disagreeable tut-tutting.
Sadly, specially designed days out like these are few and far between. With fear of the unknown fuelling my cautiousness perhaps too much, most of our days out remain predictable and prosaic. Perhaps environments that lend themselves to autism together with a little bravery on my side would let us have a healthier diet of the all-important days out.

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. 
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. 
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. 
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.

A Problem Shared

This article originally appeared on www.senmagazine.co.uk

Long before Isaac was diagnosed with autism at the age of three, I saw how the world, with all its peculiarities and obstacles, was that little bit more hostile for him – that little bit harsher. Seeing him struggle – often articulated as screams, anger and crying – seemed so unfair to me. I didn’t subscribe to the terrible twos or naughty toddlers view; there was something about Isaac’s tears that was different. Then the year-long punishing process of tests finally came to a conclusion in a paediatrician’s room with the words “autism spectrum disorder”, a tongue-twister that deliberately acts as a soft landing for the harsher truth: “your child has autism”. 

Autism now affirmed my regular bouts of heartbreak that accompanied Isaac’s regular bouts of distress. It was the alibi for his perceived anti-social behaviour. The subsequent learning curve was steep and rapid but was aided considerably by Brent, where I live in London. Its support structures involved workshops, relevant therapy, advice on education, and bodies to assist Isaac through mainstream or specialist school. My wife and I felt reassured that, as long as we fought Isaac’s corner, there was a team of people who would fight it too.

However, what I came to realise quite swiftly was that a chasm existed between what some people knew about autism and what most people didn’t. If the condition hadn’t touched them, it seemed not even to be on their radar; autism awareness was minimal at best. Professionals, experts, and parents who had accepted their child’s diagnosis, on the other hand, were awash with facts and immersed in the world of autism. 

I quickly benefited by joining an online community about autism where questions were posed and answered, discussions launched and new people nurtured with the help of its community champions. I also became aware of its presence as a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance, exhaustion and difficulties that parents of children with autism battle with – to varying degrees – day in, day out. Things like the postcode lottery for support services only compounded the ignorance around autism. 

Crucially, it kick-started a need in me to write about autism as a cathartic personal response, coupled with a commitment to help spread awareness. I began writing in the emotional stories section of the site and became an autism campaigner by accident. 

I was able to express how I felt being at the beginning of my journey and it seemed to be well received. Getting regularly involved in discussion forums compelled me to do more and this is what inspired me to start blogging about life with Isaac. 

Simply writing as honestly as I can, about the plethora of issues one faces as a parent of a child with autism, has provoked an overwhelmingly positive response – one I couldn’t have predicted. People in a similar predicament seem emboldened and appreciative that I’m writing on their behalf too. Family, friends and now strangers who may not be directly affected by autism are grateful to be educated. Even professionals have circulated my blog among their staff, which is humbling. 

Recalling those early tormented years fuels my campaigning as much as fighting for Isaac in the present does. I know parents whose children haven’t got a diagnosis yet or are in environments impervious to the effects of autism. If sharing our family’s story helps them in any way, then our experiences will be serving the best purpose they can.

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