Autistic people need routine to enable them to feel safe and secure within their environment. Any sudden and unexpected changes from the norm is enough to cause fear and anxiety, which in turn can lead to unusual or challenging behaviour. For some this is the only way they can communicate their distress. John is no exception.
Sometimes doing something which we perceive to be a good thing or a treat can backfire and instead the pleasurable experience becomes painful and upsetting for the autistic person.
This weekend was a perfect example.
John has stayed with me for the past three weekends. Usually he comes to me every alternate. The middle one should have been spent with his dad but the boiler had misbehaved and so John came to me instead.
On the face of it, it was a bonus for me and at the time it seemed so for John too. This coming weekend John would be spending it at ‘Nelsons Croft’, and as a big treat he gets to travel on Mr Branson’s ‘Yellow Train’ as John calls it, even though it is actually red.
In order to get John back back into his routine I would then have him home again the weekend after that. However it means that it will have been 6 weekends since John stayed with his dad.
John knows where he should be at any given weekend, he has a pictorial calendar on his wall at NC with photo’s of me gurning like a village idiot, his dad looking like Sid James and the ‘Yellow Train’ looking very red.
His dad helps him to put the correct picture on the corresponding day when he takes him back to NC on a Sunday, after has spent his weekends either with him or me.
Are you keeping up?
When I picked John up last Friday he was clearly confused as well as excited, which is not a good combination.
‘Hiya John’ I said as I kissed him and ruffled his hair. ‘How are you doing my gorgeous boy?’ I added as I made a start on packing his box.
“Daddy’s ouse?’ enquired John rocking gently back and forth. I wasn’t really listening as I was crawling under his desk trying to locate his camcorder leads.
‘Erm no John, mummy’s house?’
John joined me under the desk, easier said than done as he is a big lad, I was squashed against the wall on one side and John on the other. We were both on our hands and knees, bums in the air and John was leaning on me heavily, mooing gently in my ear.
‘Daddy’s ouse, seeps? Lampo Nummer Two’ he asked again.
There is a lampost by his dads house with the number 2 on it, John finds it irresistible, he stands stroking it and sharing his murmured secrets.
What Lampo Nummer Two doesn’t realise is that she’s not the only one, I have witnessed him flirting outrageously with other Lampo’s around the Wirral. He is such a tart.
I tried to count how many sleeps until he spent the weekend with his dad
‘Its erm….quite a few sleeps….erm ….I will work it out at home John, now lets get from under here hey?’ I was finding it hard to breath in, John was crushing me into the wall as he tried to get into a position where he could hold his hands up to count on his fingers.
‘Daddy’s ouse, fiy seeps, mummy’s ouse twev seeps’ he said holding his fingers up against my face and accidentally poking me in the eye.
I yelped, John liked the noise so he yelped back, slapped my head, his head and then asked ‘Daddy’s ouse, seeps?’
Oh god I thought, its going to be one of those weekends where John obsesses about something and cant think about anything else.
I wasn’t wrong.
It wasn’t that he wanted to go to his dad’s, he just needed to know that after a given length of time he definitely would be going. His way of coping with the anxiety that the recent changes to his weekends had caused, was to ask for constant reassurance. All very autistic.
Once we arrived home John took me straight to the calendar in the kitchen. ‘Daddy’s ouse, seeps? please mummy’
So together we counted out the number of sleeps. John repeated every number after me, ‘One sleep’…. ‘Woh seep’…. ‘Two sleeps’…. two seeps’ ….’Three sleeps’ ….’Thee seeps’ and then ‘Yeehaaaa’ That was John by the way, not me. We carried on like this for what seemed like hours but was infact only 21 sleeps.
I wrote it on a piece of paper for John to keep as I knew he would need constant reassurance.
He was a good boy and tried really hard, he managed to only ask me every two to three minutes and kept wanting it written down on endless pieces of computer paper! If you have never had to repeat the same words over and over again for hours, you cannot possibly understand what it does to your mind. You end up in a kind of drug induced state, foggy brain, facial tics and craving large glasses of Merlot, or maybe that’s just me.
He couldn’t sleep as he needed to be absolutely sure that it was 21 sleeps and we had to do the whole calendar thing twice more in the middle of the night, followed by singing ‘Twist and Shout’ several times together. I say singing but it was more like medieval chanting (me) and a Jews harp (John).
Saturday morning fell upon me like a cloak of lead. Today was no ordinary Saturday, oh no, today was one less sleep until John’s weekend with his dad, he would need a recount on the calendar. OMG here we go again.
After breakfast we went through the calendar twice more, wrote pages and pages of ’20 more sleeps’ on computer paper and made up a song called ‘Lampo Nummer 2’. A bit like ‘Mambo Number 5′ but better.
I dont think it will be regarded as a classic but it could definitely win The Eurovision Song Contest.
We set off for our train ride armed with a camcorder, a radio cassette, a white wind up bit of a cot mobile and twenty sheets of paper, all confirming that it was in fact now only ’20 more sleeps to daddy’s ouse’
‘Return to West Kirby please’ I asked the roly poly ticket man, smiling and stifling a yawn. ‘You look knackered love’ he said tactfully.
John skipped over to let the roly poly man know that it was ” twehee seeps daddy’s ouse’. Not wanting him to forget, he pushed one of his pieces of paper through the hatch. The roly poly man tried to hide his disappointment that it wasn’t an extra large Mars Bar. ‘Cheers’ he mumbled and waddled to the back of his office where a box of Jammy Donuts nervously awaited their fate.
John didn’t want to sit down on the train, preferring instead to walk around the carriage letting everyone know, at the top of his voice, that he would be at ‘Daddy’s ouse, lampo nummer 2, ok, twehee seeps, YES!’ and handing out his information leaflets as if he was on a political rally.
On the way back we met the nice old man that knows John and his dad, John sat next to him and bounced up and down on the seat slapping his thigh and shouting ‘yehaaaa’.
The nice old man is always game for a laugh and so he too bounced up and down and yeehaaad like a goodun’.
John stopped bouncing and as with Corporal Jones in Dad’s Army, it took a second or two for the nice old man to follow suit. John put his mouth to the nice old mans ear and mooed quietly a couple of times before unexpectedly shouting at very close range ‘ twehee seeps, daddy’s ouse, lampo nummer two, ok!’ followed by loud guffaws.
The nice old man jumped and was clearly a little shaken, he put his finger in his ear and waggled it about. ‘I am so sorry’ I said, glaring at John who grinned broadly back. Like most autistic people he finds it difficult to read facial expressions.
‘Don’t worry, I am fine’ shouted the by now, nice deaf old man.
John spent the rest of the day checking and re checking that the number of sleeps hadn’t changed, I tried to answer with more of a smile and less of a grimace. I got it wrong on a couple of occasions and said 21 instead of 20 and so the calendar was brought, the double counting started and I slipped ever closer towards madness.
Sunday morning is usually celebrated with a lie in, cup of tea and a read of the papers. Not this time. At 7.30 John bounced onto my bed with the calendar, several new sheets of paper and the slightly manic giggles. “Seeps, daddy’s ouse?’ he asked pushing the calendar into my hands. When we got to 19 he exploded into hysterics and sang ‘Who ate all the pies’ at the top of his voice. ‘Nieen seeps’ he chortled as he took himself back to bed, where he remained until 11.30 refusing to get up.
His manic behaviour caused by anxiety was waning, which meant he would now be withdrawn, hence why he hid in bed. It took all my persuasive powers to cajole him into getting up, shaved washed and dressed ready for his dad to pick him up at 12.30.
A black mood arrived before his dad did. ‘Stay ere’ said John pointing to himself and to the beautifully polished woodblock floor, indicating he didn’t want to go back to NC. “Don’t be daft John, c’mon theres a good boy.’
‘No.’ said John shaking his head vigorously ‘JohnElmo stay ere’
My heart sank, I hate it when he is unhappy for any reason but especially when its because he feels anxious and confused. Fortunately the cavalry arrived in the guise of a Sid James lookalike.
“Dad’s here now John’ I said with false glee whilst mouthing to his dad that John wasn’t very happy, drawing my finger across my neck, sticking my tongue out and feigning death; just to add a bit of drama.
His dad ignored John’s protestations and packed all his stuff in the car. ‘Come on matey’ he said, but John was having none of it. ‘No, stay ere’ pulling his bottom lip out and moaning loudly. After ten minutes of bargaining his dad eventually managed to coax him out of the house with the promise of some new batteries…..I know, I know!
As he walked down the drive John stopped, turned to his dad and asked ‘Mummy’s Ouse, Seeps?’ and like a lamb to the slaughter his dad said ‘Lets get in the car and I will work it out’