Wednesday, 17 February 2016

The New Normal

Nearly five years later, I lhink that we've pretty much adjusted to "the new normal"  - it remains very hard, don't make the mistake of thinking otherwise, but it's no longer shocking to us...it just...is what it is.  But sometimes, I see our "normal" through the eyes of others and remember just how much we have adjusted to a new way of living.

Yesterday morning, I took Adam to Asda.  We had run out of Dumbles and I needed to restock. These days he bites the teat off them so goes through them pretty quickly, but while we've managed to largely restrict them to bedtimes, we haven't succeeded in getting him off them completely.    So, as usual, we parked in disabled parking and I clipped Adam onto his safety harness, allowing him the freedom to walk while knowing he can't take off or put himself into harm's way.  As we walked into the shop, Adam noticed his favourite Big Ride (the travelator) and as I dared to move into an aisle instead of instantly heading for the travelator, Adam arched his back, screeched and prepared to drop to the floor.  Reacting quickly, I crouched down to catch his eyes, saying and signing, "Adam, would you like to go on the Big Ride?"  The scream stopped mid-breath and he silently tugged me towards it.  

As usual, Adam put himself as far away as his harness and lead would allow, leaving me to shift my weight backwards to compensate for being tugged forwards while tilted backwards by the escalator.  I ignored the odd looks we received, not caring if my son looked remarkably like a dog on a lead, I knew he was enjoying himself.  But at the top, as we didn't actually need anything upstairs, I crouched down again asking if he wanted to go back down or to explore.  Adam tugged me down the centre aisle and we wandered for a while before he discovered the balcony.  Pressing his nose against the plexiglass, Adam peered down to the ground floor, absolutely focused and silent.  We watched together for a while as I was left to guess what had caught his attention so completely, and then I asked if he would like to go on the Big Ride again.  We were off for the downward trip but, as expected, when we arrived at the bottom and I tried to go down the fruit aisle, Adam immediately dropped to the floor, screaming and thrashing.  I waited, talking him through it and encouraging him to come help me find something special. Eventually, I managed to get my son to his feet.

As I searched for the baby aisle, I knew Adam was on a very fine thread - he was cooperating...for the moment...and only because I was keeping up a constant stream of encouragement - "Adam, can you help Mummy?  Can you help Mummy find something special?  Adam do big helping!"  Once again, I ignored the slightly confused looks others were giving to me when they saw that I wasn't accompanied by a tiny toddler but by a strapping four year old, who is the size of an eight year old.  "Why is she speaking to him like a baby?  He's a little old to be on reigns isn't he? Talk about an overprotective mother..."

Eventually, we arrived in the baby aisle and chose four boxes, each containing two Dumbles.  At first, Adam looked like all of his Christmases had come at once...until he realised he couldn't immediately have them.  Once again, I was crouching down explaining that we had to go pay for them before he could have one and keeping up a constant litany of "Now pay, Next Dumbles.  Now pay, Next Dumbles."  Managing to get Adam to the nearest till, I quickly scanned the Dumbles and dropped them onto the scale - while operating Octopus Hands to keep him away from them.  But just as I was nearly home-free, I realised the "2 for £6" deal hadn't come off the price so with a sinking heart, I pressed the "help" button and tried to keep Adam away from them (once opened, consider them bought).  The smallest things can be a turning point in our world...

The friendly member of staff came over to help but immediately scooped up all of the boxes of Dumbles and marched back up the aisle to check the price.  If only she had told me what she intended, then I could have managed the situation but she didn't think to - why would she?  Instantly, Adam's back arched and he began to scream, and scream and scream.  He dropped to the ground, thrashing on the floor, his head only narrowly missed by a passing trolley.  This time, the looks of shock were blatant, the thoughts of people might as well have been written in big speech bubbles over their heads:  "That child is out of control!  Why is he behaving that way?  Why is she tolerating it?"  

I crouched down to Adam's level, pulling him back out of the way of the trolleys, trying to soothe and explain that Dumbles would be back, they hadn't gone forever.  Dumbles were coming back.  Adam's response was to scream, slap and punch me.  The looks of shock became looks of horror.  "What on earth is WRONG with that child?!  He's much too old to be behaving that way! A good smack is what he needs!"  I spoke, signed and tried to soothe.  When that failed, making sure he was out of harm's way, I left Adam to scream and kick on the floor - wearing his harness and attached to the strap around my waist, I knew he couldn't get away.   He was safe enough and I was close by in case he started banging his head on the floor.

After what seemed an age, the member of staff returned carrying three boxes of the "right" Dumbles and one box in another shape and size but that were the same price.  I explained that all of the boxes had to be EXACTLY the same brand and variety, colour didn't matter but brand and shape did.  She looked at me as though I had two heads and said, "Does it really matter?!"   "Yes, it does matter.  When you have a child with autism, it matters.  You learn not to negotiate because you can't negotiate."  While remaining polite, the incredulous look on her face told me she thought I was being more than a bit high maintenance.  Thankfully, her supervisor took one look at Adam (still screaming on the floor) and ran to get a box of the correct variety, telling her to ring up four boxes and just let him have one - we would sort out payment in a minute.  

Fumbling for a box, I opened it and popped a Dumbles into Adam's screaming mouth.  Silence fell instantly, the tantrum ended as quickly as it had begun.  I made a point of not meeting anyone else's eye, sometimes it's just not worth it as I may regret what I would say. Transaction finally complete, I guided Adam out of the shop and back to the car.  As we walked towards the disabled parking space, an elderly man with a walking stick and parked beside us, shot me a furious glare.  I'm used to this, it's the glare that says: "Both of them can clearly walk, why is she in a disabled parking space?  Doesn't she know they're for blue badge holders only?!"  It was another one of those silent speech bubbles.   

I ignored him as Adam shouted "ONE! TWO!" and opened two car doors before climbing into his special needs carseat announcing, "Purple, purple!  Purple, purple!"  I gave Adam his two purple toy dinosaurs and strapped him in as the elderly man continued to glare at us.  Still ignoring him, I fastened my own seatbelt and slowly drove away, thinking about "normal" and how different normal appears to us and to those around us.  

It was just an ordinary snippet, out of an ordinary day.  An hour's trip to buy six Dumbles.  Completely normal.

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