I love Christmas carols, really I do but this year John has been mashing a few tunes together and it’s all gone Pete Tong. ‘We wish you a merry Christmas’ continually sung by various Disney characters for 21 hours a day ( I kid you not) layered with Slades ‘Merry Christmas Everybody’ and the tune from a YouTube clip called ‘Bosch washing machine Chance Pe Dance offer’ (have a look if you don’t believe me) has induced psychedelic hallucinations hithertoo only experienced from dodgy mushrooms. By the time Donald Duck rasps his way through the verse ‘We all want some figgy pudding’ and Noddy Holder screams ‘It’s Chriiiissssstttmmmmmaaaaassssss’ I can feel my sanity heading for the door faster than Van Gaal leaving Old Trafford!
I am blaming the weeks, nay months, of being forced to endure Christmas songs on the fact that my memory has been playing up, it’s a good job that John is on the ball. Sitting in the car in Sainsburys car park after picking him up from Nelsons Croft on Wednesday, John being John needed to make quite sure I was fully up to speed on the forthcoming events. “Eaher Egh two mo seeps ok?” He looked at me for my reaction. “Yes John that’s right it’s Easter on Friday, we will have an egg hunt and an Easter cake.” John started to bounce and rock which made the car shunt forward as if it was stalling. I had called his bluff and he was computing the information. “Rabbi?” enquired John bobbing and bouncing “Chickees?” his eyes glued to mine. I hesitated for effect before laughing and kissing him “Nooooo, don’t be daft John it’s Christmas, there won’t be any Rabbits, Chickens or Easter Eggs” I continued to smooch on his cheek as he let out deafening squeals of delight. He got me in a wonderfully festive headlock and pressed my chin so hard onto the steering wheel that the horn blasted several times causing even more startled squeals, this time from me and a couple of people standing outside the shop. I waved in a way which said that I was sorry, they just stared. I forget how it must look to people when John is being John. I am used to it but I guess seeing a 17 stone man licking and strangling a little crazy woman…. well it doesn’t look good does it. Being concerned citizens they looked at eachother, shrugged and then hurried off without a backward glance.
I was only going in to buy him some sweets, something we always do. He stood by the car while I went inside, he would be fine watching the sliding doors, it’s one of his favourite pastimes. What I didn’t realise though was that John was now consumed with the need to make everyone aware that it was Christmas and not Easter in two sleeps. When I came out of the shop John had a firm hold of the little old lady who I think lives in or near the car park and who is slightly bewildered. I have a sneaking suspicion she waits for us on Fridays, probably all day.
Anyway he was bellowing down her ear “No egh, no egh” I rushed up and untangled her, she was quite unperturbed. “Oh hello dear” she said when she was free from John’s grip “We are having a wonderful time singing carols. It was Joe’s idea wasn’t it darling.” she said stroking John’s cheek. John mooed and shook his head while ferreting in the Sainsburys bag for his sweets. “John” I reminded her gently. “His name is John” “Is it?” She exclaimed in surprise “How strange”
John then spotted a friend of ours and he started leaping up and down shouting “No egh no egh” so that she too would be clear that it wasn’t Easter on Friday. That brought the old lady back to life and she started singing “Noel Noel, Noel Noel, born is the king of ……..” She turned to me and said “oh it’s completely gone…..where is he the king of again?” I tried to be helpful “He is not saying ‘Noel’ he is saying ‘No eggs'” I should have just stopped there but it was too late, I blundered on ” John is autistic and needs you to know that it’s Christmas on Friday and not Easter, so there won’t be any eggs but there will be presents. It’s his way of confirming that Christmas is definitely going to happen on Friday” She was smiling innocently at me and in such a way that my heart melted, here she was just happy singing carols with Joe and there was I trying to explain autism to her. Who am I to be bursting her bubble. “Israel, he is the King of Israel.” I smiled at her.”Good lord is he!” she exclaimed in a surprised voice “That’s very odd” and with that she wandered off.
I guess what I am trying to explain here is that Christmas carols have a lot to answer for in my life and I believe that I am suffering CC fatigue. John on the other hand can’t get enough of them and as regular readers of this blog will know he plays them all year round too. In the months and weeks approaching Christmas he plays them louder and finally when he comes home for Christmas he doesn’t sleep for longer than three hours at night, therefore neither do I. By the time Christmas Day arrives I am barely functioning while John is just getting warmed up.
Now where was I…..oh yes my Christmas Carol fatigue. I believe very strongly that all this bloomin’ noise and lack of sleep plays havoc with my er, my er…..my memory. John on the other hand has a photographic memory, a lot of autistic people do. He memorises everything in a split second and is never wrong. He knew the way to Abersoch when he was two years old and directed us by shouting ‘Way’, one of the few words he could say, and pointing left or right every time he wanted us to turn. We tested him and he got us to Abersoch, we obviously knew the way but we went totally by his instructions. Amazing.
John had asked for four specific Christmas presents and then added about twenty others onto the list. Everyone would be logged in his memory. He would test me every visit home to make sure I had taken note. He wanted a blue velour scalloped edged double headboard……..because he had had one when he lived at home and when we redecorated his room we changed it to a minky-brown colour. I didn’t take into account that he would want everything exactly the same. John hates change, again it’s part and parcel of his autism. Anyway we had to renew it because he had eaten, chewed and picked holes in it, whatever the hell he had done to it, it was a mess. He also wanted two ‘Speakers’ as he called them. They are infact 2 interior side panels from a ford Fiesta MK1. They have been his longest obsession and are now rarer than a good nights sleep! Next on his list was a new wall clock because he only has 6, and finally a noisy, screechy musical game he calls ‘Spaceship’. Every day we went through his list of four important presents and the twenty other must haves. And because I had bought, wrapped and hidden everything over a period of months I felt rather smug that I was all done and dusted… never a good thing!
I didn’t bring one of John’s many clocks home from Nelsons Croft as I knew he would have a new one waiting for him on Christmas morning. One of the spaceships from his original game was missing presumably doomed to orbit the Earth for all eternity but it didn’t matter because he had a brand new, much noisier version of the game also waiting for him. He was besides himself with excitement, I was besides myself with smugness and on Christmas morning all the presents were beside the tree. All that is except for the clock and the Spaceship game. They had mysteriously disappeared. John was sat amongst a mountain of gifts like the good lad that he is but was clearly confused wondering where his two presents had got to. “Spaceship ok?” he asked every ten seconds followed by “Big Clock mummy?” He knew they must be hidden somewhere because mummy had said she had bought them, as per his instructions, and she is never wrong.
Turns out I didn’t buy the Spaceship game after all! I had bought him a completely unrelated but equally noisy, musical car game that he hadn’t even asked for. I did however buy the clock, I know that for definite because I found the receipt….eventually. However today is Sunday and as yet, inspite of turning the house upside down at least 100 times, I still haven’t found it. John has been very understanding and remained very calm. I am so proud of him and this is yet another indication of how well he is looked after and supported by his staff at Autism Together Wirral (The new name of Wirral Autistic Society) They have helped him find ways within himself of coping with the unexpected.
This situation could have potentially caused a huge meltdown and it would have been my own fault. The first rule of being a parent or carer of someone with autism is to always do what you say you are going to do. This grows trust between you and that in turn leads to the person being able to feel confident that everything in their world is ok. They will then be able to function without being crippled by fear and anxiety. I think we should all learn the value of trust whether our lives are touched by autism or not. The world would be a much better place.
As I have been sat writing this post John has continued to torture me with ear splitting renditions of Ding Dong Merrilly On High overlaid with Fairytale of New York and Bowie and Bing singing Little Drummer Boy……..Par Ram Pam Pam Pam……