I chat to my "chum" via e-mail, about our families and how their reactions are so pivotal to our own well being. The issue of the extended family, as opposed to the tiny autism unit has great repercussions. Unless families are geographically and perhaps psychologically close, it can be difficult to translate the message, to explain how autism impacts the day-to-day minutiae of life. What hits home for me, is her reference to the fact that we, as parents, give the impression that "we’re coping."
It puts me in mind of a visit home to England, over a year ago now.
Because we were in England there was the inevitable dose of rain. My youngest son does not ‘do’ rain. Rain is a curse from on high to torture the tactile and sensory challenged child. For many an autistic child, their emotions are either off or on, there is no degree of grey.
Thus is was, that we made a trip to the aquarium. I was armed with enough umbrellas and rain gear to fit out a small army unit but as the miles clocked up on the car, the anxiety rose exponentially. He watched the rain from within the safe confines of the car, agitated and quaking in anticipation of the possibility that at some stage in the near future he might have to venture forth and exit the car.
If you say to someone, anyone, ‘he just doesn’t do rain,’ it is hardly surprising that this fails to translate. There is nothing like witnessing ‘he doesn’t do rain,’ to get the message across more poignantly than mere words can describe.
We arrive at the crowded car park, a pay and display type. Their father leaves to fight with change and a queue at the payment machine. I am left with three small children and my elderly parents. They slowly adjust buttons and tweak umbrellas, as I attempt to gather the children. My daughter knows what’s in store, jumps out of the car and hares over to her dad to avoid the fall out. Her traffic sense abandons her in the rush, but luck is on our side, as an unsupervised 8 year old dashes across the traffic to the safety of her father’s side. My eldest son tumbles out of the car a little like how you fall out of bed first thing in the morning, drowsy, befuddled and uncoordinated. My parents wait patiently for our group to reassemble so that we can move as one party.
My son continues to bumble about between the cars oblivious to traffic and the rain. All he needs to do is stand still but instead he lurches around like a badly strung marionette with a novice puppeteer. I have never been certain whether car journey’s disorientate him or whether his gyroscope takes time to calm down, but the net effect visually, is a drunken sailor. I speak to my father in a tone that I have never used before, “hold him!” My father blinks, uncertain whether I am talking to him or a stranger. He steps to one side to block his escape, but it’s not enough, “hold onto him! Hold his hand or his arm!” My father is even more startled but tries hard to clutch the moving target.
Everyone waits in the rain. Minutes tick by. I submit to peer pressure because I am spineless to the core. My mother stands nearby as I begin the last hurdle. I open the car door where my youngest son is curled into a small ball in the foot well of the car. I slip my hands under his arms and around his chest to lift and extract him. He immediately starts to scream and flail struggling to find a purchase. I can feel my mother flinch as she takes another step backwards to make way. He clings to the door frame as my grip slips to his waist. His legs kick violently and try to push me away but I am stronger than he is. I uncurl his fingers with one hand whilst holding the spoon position with the other arm. As the last finger tip is unfastened we catapult out of the car. Now the whole world is witness to a full level ten meltdown, a roiling ball of flames in the pitter patter of raindrops. He is puce in the face, slick with snot and furious tears of the fearful. Passersby cannot help but look. The tantrum of a toddler in the body of a six year old in beyond comprehension. His desperation is palpable.
All of this was completely predictable. For some reason, cushioned in my extended family unit, I had failed to acknowledge or prepare for the inevitable, as if some magic wand would whisk it all away so that we could pretend to be an ordinary family on an ordinary day trip. I cannot fathom the depths of my own guilt, that I could hoodwink autism, that I could delude my parents, that I could subject my whole family to another public display of humiliation, that I could torture my son in this excruciating manner.
He flips into a tip toed rain dance before scrabbling up my body like a monkey. His arms are around my neck, his legs encircle my waist as his head buries itself in my sternum. My mother leans the umbrella over us both but he is so frenzied the absence or presence of rain is completely off his radar. His screams lower to growls as he chews the neck of my T-shirt, a coping and self calming gesture. I can see my father’s grip on my other sons arm, tighten as he twirls like a limp, damp, spiraling tissue, the dog entangled in the lead.
The eye of the storm passed as we stood in the drizzle in the car park. Of the many people who observed us, the cloud of disapproval was pierced by a few pairs of eyes. Those eyes belonged to people who could not identify what they were looking at. I imagine that they had a visceral response to seeing a child is such obvious distress but were unable to to see any evidence or cause of the harm. I could see their hesitation, the need to step in an offer help and yet the innate knowledge that everyone was out of their depth.
I wait for either of my parents to speak, as I catch my breath. I see spouse and my daughter gallop back on their return journey. I find it ironic that I spent the majority of the car trip lecturing, in far too much detail, why the ‘no carrying under any circumstances campaign’ was so important. Fortunately, no-one mentions my monologue. “Is it…is he……are they……always like this?” she asks softly. I look at my mother, her face is a study of concern and compassion. “Well, you know……” I smile, as I cannot bear her vicarious pain, “there ain’t no rain in California.”
p.s. In case you are worried that some autistic children can never adjust to 'weather,' I can assure you that with a carefully orchestrated desensitization plan, over time and frequent exposure, I am confident that this is another hurdle he can overcome, just as we are enmeshed and make progress with the 'outside' campaign.
13 minutes ago