The Times They Are A Changin’

Now here’s a thing, if you were to ask members of the general public if they could name one fact about autism, I bet the most popular answer would be that people living with the condition prefer routine. John is no exception, functioning best when he feels safe in the knowledge that if everything remains the same it limits the chances of the unexpected. Of course it’s not always possible or indeed healthy to be so rigid with routines therefore strategies are put in place to help him cope on the rare occasions a plan needs to change. His wonderful support staff at Autism Together and we as a family have always done our best to make sure John feels safe and secure and able to enjoy his life without suffering too much fear and anxiety, that two-headed beast which feeds greedily on people living with autism.

To help him navigate his way through life John likes the most important events of his year to be firmly embedded in his mental calendar. It begins and ends with Christmas his most favourite time of the year. His other favourite annual events are slotted in where appropriate. The more John asks about each event the deeper into his memory they go and therefore the need to make sure they actually happen grows ever more important. We all fill in special dates on our calendars, the difference is that with John his are all filed away in his wonderfully complex memory banks. John has a photographic memory so doesn’t need reminding of dates etc but he does need to be continually reassured that everything on his calendar is definitely going to happen and in the correct order. So he ‘Reminds’ everyone several times a day which event is next. He even reminds complete strangers in Sainsburys while I hide in the wine and spirits aisle.

So, Johns calender has been as follows for 27 years. Once christmas is done and dusted we come to February and  he celebrates his birthday, followed by his holiday to Wales at the end of June, his S Boat trip in September (that was added 4 years ago by John) followed by Bang night (as John calls it) in November and then back to Christmas. His support workers at Nelson’s Croft have made a visual calendar for him with photographs of each event. Although he knows the order of what’s going to happen, being able to see visual evidence makes it all the more exciting. It also makes it easier for him to communicate with the various members of staff when he needs to be reassured that the next event really is going to happen. It’s not always easy for people to understand what John is saying so his visual calendar is also a very important communication tool.

The main event in John’s calendar is always going to be Christmas. I would love to say that his massive love of the festive season is because it’s about the birth of Jesus and the whole nativity thing, but I would be lying. To John it’s all about the Christmas trees, Christmas carols, Christmas lights and above all Christmas presents. Lots and lots of presents, the single most important part of the whole shebang by a country mile. He starts making his present list on Boxing Day and continues to add to it as the year progresses. The only thing pertaining to the nativity story is that he likes stars and donkeys or “Dahs and Doyeys” as John would say.

John was about six when he first fell in love with a Donkey, it was grazing in a field next to the cottage we rented in Abersoch. He refused to come inside unless his Doyey came too so in protest he scrambled under the rickety fence and lay in the grass under its tummy. The Doyey looked at me under its long eyelashes then started munching on Johns shorts. John thought it was hilarious so he took his under pants off and fed them to the donkey too. The following year the Donkey was replaced by a goat, I feared that none of us would have any clothes left by the end of the week….but I digress, now where was I…..oh yes the calendar.

John’s need for routine spills over into his presents too. He always wants the same musical nursery toys etc that he has been getting since he was a baby. For example, musical cot mobiles, musical lullaby lightshows that project images onto his ceiling and walls, alphabet desks that teach spelling, sing songs, make animals noises and ask you to find various objects. You know the kind of toys I am talking about, the ones that have American accents or play tunes ever so slightly off key and so loud you are ready to kill your granny just for five minutes peace. Oh and the batteries, they never, ever, bloomin’ run out. He also wants any number of talking Buz Lightyears, he can never have enough and he also likes anything furry or fluffy that giggles including all four Teletubbies. So,these kinds of toys make up at least three quarters of what I buy. Thank goodness for Ebay and thank goodness for Casillero del Diablo and their very fine Merlot. It roughly translates as Hole of the Devil and it’s where I retreat to after the Queens speech.

Christmas is always anticipated with much excitement and very little sleep for either of us. Year on year he is awake all night but never wants to come out of his room until half past seven; preferring instead to play Disney videos of Mickey Mouse and his friends singing the ‘Twelve days of Christmas’ over & over again. By quarter past midnight I am practically begging him to go down and open his presents. Donald and Daffy Duck’s voices start to grate after four continuous hours of lisping and spitting over the ‘Theven swanths a sthwimming’ However nothing will entice him downstairs until as John says “Ha pa sev.Ok.Yes.”

This year you could have knocked me down with a feather. At some point in the Disney fest of Christmas eve night, John must have turned his video off and gone to sleep. I know…this never happens EVER!. I too must have fallen asleep, again this never happens and I awoke with a start at around 7.30 a.m. Groggy, confused and assuming I had gone completely deaf as the house was so very quiet. I went into Johns room. Tv was off, video was off and John was fast asleep buried under his duvet. Being a calm and unflappable person…yeah right….I immediately started shaking him, shouting “Wake up, oh my god wake up” and was about to start resuss on my poor lifeless boy when he mooed very loudly, said “Nigh Nigh” and pulled the covers back over his head.

For the first time in his life John didn’t want to get up on Christmas morning. “Get up!” I shrieked, panicked by the weirdness of the situation “Father Christmas has been, come and see”. I pulled the duvet back off John and a tug of war ensued.”Fiy mo mimmee” mumbled John. “Never mind five more minutes its bloomin’ Christmas for gods sake, get up” I was rattled by his nonchalance and sudden change of routine. This just doesn’t happen and it was unsettling. He must be ill I thought, that’s it he must be ill and I rushed off to fetch a thermometer. Wiping it on my nightie, very hygienic I know, I shoved it in his mouth, in his ear and under his arm, no temperature anywhere. John was batting me off with one hand letting me know he would get up in “Teh mimmee” “Ten minutes!” I spluttered “You said five before, don’t you want your presents then?” He opened one eye, yawned, scratched his tummy and fell back asleep. He wasn’t ill as it turned out just not overly excited at being woken up from a very deep sleep.

Christmas 2016 turned out to be less frantic and different in parts to past Christmases, I found it all a bit unsettling. Dare I say that I was missing the routine which had until now been set in stone. John was still noisy once he got going but seemed more grown up somehow if that makes sense. He refused to let me photograph him opening his presents, usually he wants photographs and video footage. Instead he stood putting his open palm in front of my face as if he was being hounded by the Paparazzi. “No piccies! no piccies no video” he demanded as he tried to turn away in dramatic fashion. “All right John calm down” I replied, moving out of the way before one of his body guards confiscated my iPhone. Oh my gawd he was turning into a diva.

He didn’t try to open anyone else’s presents either and again that was very odd. I usually spend a good portion of the run up to Christmas secreting Johns presents in the shed’s of my very kind neighbours. The family presents are hidden in various drawers and cupboards in an attempt to prevent John from opening them. He can’t hide his disappointment so he just hides whatever he has found instead. When he opens what turns out to be a  scented candle or a pair of slippers instead of Buz lightyear or Tinky Winky he will hide them without me knowing….until late Christmas eve when I am looking for all the presents I have hidden but not able to find any.

I usually have to hide the poppers and crackers too or John will pull them all before the big day. On Christmas eve I always give him two of each to pull as it adds to the excitement for him. This year when I offered them to him he looked at me as if I was mad, tapping his hand on the table to make his point. “Popper, cacker mommow toiyey” he said letting me know that the poppers and crackers belonged on the table with the turkey and the rest of the Christmas lunch. His look spoke volumes to me. ‘Mother I am almost 29 years old ffs!Poppers and crackers are for kids. I must away now to tickle a Tellytubby.’ I guess he has a point but to me I will always want him to be my little boy who rushes around popping and crackering on Christmas eve.

Once the Christmas tree has been packed away John looks forward to “Febby burdy Johnelmo” and another pile of presents. He always asks for them to be put in a very particular place on the rug in the lounge. Every year he draws an imaginary circle on the rug with his finger, just in case I forget exactly where they should go. He is nothing if not helpful when there are presents at the end of it. Oh yes, and he wants them on the Saturday at three o’clock precisely. By the way, this special place of his is in front of where the Christmas tree would be if only I could be persuaded by his vociferous and dramatic demands to put it back up for his birthday. Over the years I have built up an immunity to his charm, the big brown puppy eyes, the mooing, the tickling and the slurpy cheek licks. I have a heart of stone and the Christmas tree remains in the loft. Another highlight of his birthday is that he gets a big cake, which he chooses. Last year it was quite grown up, it had coloured balloons and stars on it. The year before it was a very pretty, very pink ‘My Little Pony’ cake. He carried it around Sainsburys showing it to everyone we passed on our way to the till. “Ma Pooey Cay” exclaimed John proudly thrusting the box under random people’s noses and shouting “Johnelmo burdy.OK!” by way of explanation.

His birthday this year is just over three weeks away and as always it will be celebrated on the Saturday nearest to it. John made the rules up years ago but to be honest I think we may have another ‘Christmas 2016’ situation on our hands. He hasn’t told me what presents he wants which is most unusual. I asked him if he wanted to look at cakes this weekend when he comes home. He just said “Biiig Cay”. I love to see his face as he spends a ridiculously long time sniffing all the boxes in the birthday cake aisle before choosing at least three. We then have a Mexican standoff because ‘Mean Mum’ will only allow ‘Big John’ one measly cake. “Thee cay peas” he will beg and plead. “Theeee caaaay mum peas” but I will stand firm .”One cake John” I will hold one finger up to cement my intent. “Theeeee caaaaaaay peas” holding his hand to his heart to say ‘I love you’ That used to work I must confess. “One cake John, choose the one you want.” My voice will wobble because he has signed I love you and is fixing his beautiful big brown eyes on my soul. We will stand together in front of the many beautiful cakes, neither willing to give an inch. “Ay! are you two going to be all feckin’ day, some of us have got homes to go to and parties to sort out.” The silence will be shattered by a disgruntled customer whose patience is running out. John and I have inadvertently blocked anyone else from getting near the cakes but really, is that any way to carry on. After I educate her on the virtues of patience and understanding plus a smattering of autism awareness, put her hat on straight and give her my best death stare, John will choose his cake and all will be well in our world. Unless that is John has decided on a different routine, all very unsettling I must say.

After his birthday comes his holiday, always at the end of June. We have been going to Wales or “Ways” as John calls it since he was 4 months old and he has loved it. We stayed in Abersoch for the first 25 years and had the best of times come rain, hail, gale and occasionally if we were very lucky, sunshine. The wind breaks (we had six because we learned that you can never have too many) provided John with his own rainbow coloured den as well as unsuccessfully attempting to keep the sand off our lunch. The force 8 summer breeze ensured we didn’t overheat. It was the only place you could sit on your camping chairs in an overcoat, eat crunchy egg rolls and listen to ‘Once in Royal David’s City’ blasting out from the cassette player in John’s den. What’s not to love!

In more recent times we have spent John’s holiday in Caernarfon or “Oi Oi Ig” as John calls it. It was his choice due to “Oi Oi Ig” having two of his favourite things, a bridge and steam trains. It also has a communication mast 1000ft up in the hills and is itself 1000ft tall. John loves it and we take frequent trips to look at it from every angle. He has built up a real love of all things Caernarfon over the years and now prefers being there to being on the beach. He loves the little cottage nestled in the hills overlooking The peninsula and he has a bedroom with two big beds in which is a great source of fun to him but he particularly loves his en suite. Well more accurately he loves the toilet. The flush has a Macerator thingy in it (don’t ask!) making the whole toilet growl and vibrate which makes John howl with laughter. It also has a sloping Velux window which meant that if he climbed on a chair and stuck his head out of the window at a wonky angle he could just about see his favourite communication mast up in the hills six miles away. He was always getting his head stuck and his dad and I would have to grab a leg each and lift and heave him out of his predicament. John thought this was great fun, however trying to wrestle a sixteen stone giggling wriggling Johnelmo out of a window in a small bathroom roof is not as much fun as it may sound. This would happen at least three times a day. My how we laugh.

John would spend the week dashing from one end of Caernarfon harbour car park to the other, which is about 3/4 of a mile in length. Whoever designed this part of the little town had failed to factor in the needs and desires of  Johnelmo. One end of the harbour houses the swinging road bridge which is a major obsession of his. The other end has the small railway station. From here the Welsh Highland Steam engines proudly pull their little carriages full of tourists and a few bewildered locals around Snowdonia. Both the bridge and the trains are equally as important to John therefore he needs to be in both places at once.

So, in order for John to enjoy the full experience he has to run first to the bridge, jump up and down whilst slapping himself almost unconscious and yell “Man, bridge, yahoo”. Once the bridge man swings it open for him he turns around and runs all the way to the other end of the car park to await the arrival of the little steam train. He also loves the station toilets and likes to hide in a cubicle giggling when unsuspecting gentlemen walk in. His dad can usually be found on his hands and knees talking under the door to John trying to coax him out with promises of ice cream. Once John hears the train arrive he’s like a greyhound out of the trap and hares off down the platform.

After licking all the windows he then videos every carriage, making friends with the passengers already on board. He sits by them eying up their sandwiches and assorted cakes until they reluctantly agree to share them. His dad stands on the platform, his nose pressed to the window mouthing ‘Sorry’. I’m not sure which of the two of them is the more off putting. I sit on a little bench by the ticket office minding the bags and my own business, hoping nobody realises that I am with the weird bloke staring in at passengers through the window.  Once the guard tells John the train is due to go he jumps off and waits on the platform, watching the little train chuff and puff along the little track winding its way out of the station and out of view. Then he’s off and it would be our turn to chuff n puff chasing John all the way back to the bridge as he hoots and hollers with delight. Fortunately his dad is a fast runner. He might resemble Sid James from the Carry On films but he’s got legs like Usain Bolt.

I often wondered what the hoards of day tripping pensioners must have thought, sitting on their coaches and eating their packed lunches overlooking the harbour. Squashed together in their double seats like sardines and boiled pink with perspiration they stare through the steamy windows at the strange goings on. They could just make out a young man with very loud shorts and even louder screams, being chased by Sid James shouting “Lets go back to the toilet” followed some time later by a weary Hobbit carrying the bags and sweating like a glass blowers bum.

So June 2016 arrived at long last and all was in place for our usual trip to Wales. Cottage booked, loud shorts a plenty and enough wine stocks to last the week. John hadn’t been himself last year and at the last minute decided he didn’t want to go on holiday to Wales. He was upset and miserable and it was beyond his ability to cope. We understood the reasons, I wrote about it in the last blog post, it cut very deep to think that his fears and anxieties had overwhelmed him to the point of not being able face a holiday in his favourite place. It signalled a massive change for us as a family, we didn’t know if he would ever to want to go again. His dad and I were gutted for him and for us as a family. Little did we know at that point that 27 years worth of routines were going to change in such a radical way and all due to that two-headed beast I mentioned at the start of this post.

Summer holiday wise John had ripped up his calendar and rewritten it. It could have something to do with two old friends of his, two sisters in fact, Queer Mary 2 and Queer Elizabeth. John can’t pronounce ‘Queen’and its sounds as if he is saying queer. Not entirely sure what Cunard would say about that but hey ho!

John adores big ocean-going ships of all kinds. Tankers, cruise Ships and those gigantic container ships. He loves them all and spends a lot of his time with his support workers down at the river Mersey whenever a big one is due in. When The Queen Mary 2 first came to Liverpool John fell deeply in love with her. When she brought her two sisters Elizabeth and Victoria in 2015 to mark Cunard’s 175th Anniversary he was in seventh heaven. He wanted to get on board, naturally and why not? All very logical to John, after all he had been on board and was captain of ‘The S Boat’ so what’s the big problem? We explained that the Queens aren’t like the S Boat and therefore he couldn’t go on board. He asked me to phone ‘The Man’ John thinks there is an army of men who can fix anything for him and is always asking me to phone one of them. I told him we couldn’t phone the Queen man as he didn’t have a phone!

The Queen Elizabeth was due into Liverpool the weekend we should have been going on holiday. John knew this and he also knew that we wouldn’t leave for Caernarfon until the day after he had been to see her. When we looked back we realised that he had seemed more excited about seeing his beloved “Queer Elibubub” in the months leading up to the holiday than he was over the holiday itself. John had decided that a day flirting with his beloved Queen Elizabeth on the banks of the Mersey was far better than a week in Caernarfon and nothing was going to change his mind. His dad and I hoped things would be back to normal by summer 2017.

I was going to pay the deposit on the cottage for this summer holiday before Christmas and so asked John if he was looking forward to going to Caernarfon to see the Bridge and the trains in the summer. “No bidge” shaking his head and his whole body. “No Ways. No Oi OI Ig” I asked him why he didn’t want to go to see the bridge in Caernarfon or go to Wales. He wouldn’t answer he just shook his head. I tried one more time. “We didn’t go this year did we John but we can go back next summer, stay in the cottage and you can see the bridge and the trains, not forgetting the mast.” I knew in my heart that it was no use, he clearly had no intention of going away to Wales. He just kept shaking his head. Eventually he stopped, looked at me and yelled “Queer Mary tooo. Queer Elibubub  Liberbub.Yes Peas mum.ok!”

So there it was, years of the same routine, spent in the same area seeing all the things he loved, gone in an instant, replaced by the excitement of seeing one of his Queens for a day. Fortunately The Queen Elizabeth is visiting liverpool in July and it’s in Johns calendar and on his visual on too. Maybe he is just fed up of going to the same place for twenty odd years and more obsessed with the big ships rather than little trains. It’s sad to think that it’s all over, perhaps it’s me that was more tied to the routine of it than John. It certainly gave me the chance to be a proper mum to him again instead of just a weekend mum. Having him with me, deliriously happy in a little part of Welsh paradise had meant so much. No more will we cause mayhem in Caernarfon however John has amazing memories and a fantastic summer to look forward to. I think the passengers on the Welsh Highland Railway will breath a collective sigh of relief.

Not only will he be going to see the Queen Elizabeth but he asked if he could go on The Isle of Man boat to the er…Isle of man. This is another addition to his ‘New’ calendar and so he and his dad are going sometime in June. I am excited for him, I don’t get on too well with boats or ships of any kind but I am very good at waving them off and that’s what I will be doing with great gusto and a huge great lump in my throat. My boy is growing up and chosing his own pleasures, I am so very proud.

Next on the calendar or what was left of it once the holiday fiasco was over is ‘The S Boat Trip to Befass’ Johnelmo speak for Belfast. He goes in September with two support workers from Autism Together and tells me every time I see him just incase it slips my mind.”S Boat. Ember. Mum.OK” He has thousands of photos of it and he spends hours watching his videos that he takes on board. John has been tripping on the S boat for the last three years and it’s probably safe to say its right up there with presents on the list of his favourite things. I have written several posts about his S Boat trips. The most recent post was called ‘Aye Aye Captain’ others are called ‘Belfast are you Ready’ and ‘Three Men In A boat’ there are probably others. All I will add to what has been written before is that he is now an honorary Captain with a certificate to prove it and has won the heart of a very special lady called Siobhan who makes sure he and his support workers have the best of times. He sees the boat most evenings at the 12 Quays Terminal and everyone there knows him and waves. Stenna Line have gone out of their way to give John the best experience he and we could hope for. What a lucky lad he is.They deserve an award for their awareness and understanding of Autism…..watch this space.

After the S Boat comes ‘Bang Night’ in November. I sometimes think we should rename it Sausage Night as John tries every year to eat more sausages than previous years. He is aided and abetted by James and Adam who I think are secretly giving them to him when I’m not looking. John usually watches out of his window and videos his fireworks on two video cameras. This year after the sausage fest we couldn’t see him in his bedroom window. We discovered him in my room videoing the displays he could see from the sailing club and the local park. Three for the price of one hey John.

I know there are conflicting views on fireworks and I completely see why. Not every one behaves responsibly, idiots terrorise neighbourhoods for weeks before randomly letting bangers off and animals everywhere are trembling in fear. In some cases they are so full of anxiety that they escape and meet with horrific accidents, such is their panic to escape the noise. There are absolutely no excuses for the minority of idiots who ruin things for the majority of those people who act responsibly. There are calls for them to be banned except for official displays. I understand all that, but…..In my garden we have a firework display for John and he loves it. We warn the neighbours in advance and behave in a responsible manner. Not all people with Autism can cope with the loud noises or the flashes but those that can cope absolutely love it. What John and many other people with autism can’t cope with is huge crowds of people, lots of young children and in Johns case a lack of sausages. Which is what he would be faced with if the only fireworks he could see were those at an official display. For John there would be no ‘Bang Night’ in his calendar and I for one would be very very sad and just a little bit angry.

So there we are, over the past twelve months John has shown us that at times routines can be tweaked and changed at short notice but only if it suits him and as long as he is in control of facilitating the change. To prevent him from making his own choices and therefore denying him his liberty would only serve to invite the two-headed beast to supper.

I wonder what madness 2017 will bring, I can’t wait! Happy New Year.

 

 

 

 

 

 

 

 

 

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18 thoughts on “The Times They Are A Changin’

  1. Welcome back to the world of writing my lovely, talented, funny friend. Oh how I have missed you! Now get that book written, there is a whole world out there who can’t wait to read your story, to laugh with you, shed tears with you and share your understanding of the wonders of ALL life. Much love & Nanny hugs Gina xx

  2. Julie you have had me in fits of laughter and tears. You outline issues faced with autism with such humour – I will never be able to see Kevin again without calling him Sid!! Sorry the holidays may not happen in the same way but never say never. You write beautifully and I can’t wait for the next blog.

  3. Lovely to have you back julie with your amazing posts .love hearing what you are both up to .have a lovely birthday johnelmo for February 😄

    • Thanks Sandi, I have neglected the blog as my time was taken with trying to help John through his struggles last year. I will definitely be posting regularly again. Thank you for staying with the blog and enjoying reading about him. X

    • Thanks Linda, I am so pleased you enjoy hearing about him and learning about what life is like for people with autism. I appreciate your continued support for my blog xx

  4. Julie just love reading all about Johnelmo. Goodness knows what this year will bring but it was always be fun with John. Routine is nice but sometimes it’s nice to shake things up a bit and maybe that’s what he’s doing. Good luck and big hugs to you both xxx

    • Thank you Dianne, I think you could be right about him shaking things up a bit. It’s so easy as a parent to put such emphasis on trying to keep to routines that we miss them growing up and making their own changes. I have had a lot of emails and messages from friends who recognise themselves and their child in this post.
      Big hugs to you too xxx

  5. Written as always straight from the heart. Your young man certainly knows his own mind, your light-hearted and very poignant sharing of your life with him allows the reader a glimpse of the challenges and rewards of ‘dealing with Autism’
    As always utmost admiration for you Jules. Deb x

    • Thanks Deb, funnily enough he reminded me yesterday that we left out Easter when going through the calendar with him. He was quite put out! How funny.
      Thank you for your kind comments, life with John is as you say challenging and rewarding and I love writing about it. Cx

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