Twas the night before Christmas and all through the house, no one was stirring not even Johnelmo

Crikey! The world’s gone mad, John Ellsmoor asleep on Christmas Eve? “Never!” I hear you cry. It’s true; I tell you its true! He was spark out by 11.00 pm and there wasn’t a peep out of him all night. I fully expected him to be up and about at 4.00 am shrieking and laughing with the excitement of the day to come. However no sounds of an excited giggling John could be heard.

At six o’clock I stood with my ear against his bedroom door hoping to hear signs of life; suddenly it burst open and John with eyes still half closed lumbered out, headphones still on with the cable wirey thing attached to them dragging along the floor behind him. He looked startled to find me stood there, mumbled “Wee! Door!” and barged me out of the way as he made his way into the bathroom.

I pointed to the cable wirey thing and motioned to John to pick it up; afraid he might step on it and break it. He needs his headphones on at all times to block out the everyday sounds of life which for you and I aren’t a problem but for John are a painful assault on his senses. He would be unable to function without his head phones. I knew Father Christmas hadn’t brought him any new ones because they weren’t on the list that John had been making since Boxing Day 2016!

However every other conceivable toy, whether it be noisy, musical, singing, giggling and vibrating, was indeed on the long and much amended list. This included as last minute entries, two Tinky Winkys and one Po. Rumour has it that Father Christmas had checked himself into the Priory for New Year due to the stress induced anxiety resulting from said list

I hopped about outside the bathroom, all excited and waiting for him to finish and rush down stairs to see if Father Christmas had been. The door eventually opened, John still half asleep yawning as he spoke. “Beeeeh. Doooor. Weeeet.” and pointed to the headphone cable thing. I guessed it must have fallen into the toilet when he let go of it to …er…to er …well you know. Then he disappeared back into his room. What was he doing? Had he forgotten it was Christmas? I followed him in to more shouts of “Door! Seep! and then he got back into bed and pulled covers over his head. I went back to bed too but it was hopeless, there was no way I would be able to sleep now, especially after a night wandering up and down the landing and lurking outside John’s door.

So I waited until 7.30 convinced he would now be wide awake and eager to start opening his many noisy presents. I knocked on his door and entered into pitch darkness. He was fast asleep, snoring loudly, with an A4 laminated photo of his favourite boyfriend stuck to the side of his face.

An aria from Madame Butterfly was playing at full volume through his earphones and not, as I would have expected, Christmas carols. How could anyone sleep through it at that volume? beautiful as it is.

John has fully immersed himself into opera over the past few months and between us we have even mastered the first few lines of ‘La donna e mobile’ from Rigoletto. It’s his current favourite so we sing it when he is in the bath, however our version tends to lapse in to rude rugby song lyrics every few bars. Goodness knows what the dog walkers on the common think is going on but our singing does seem to stop the cats from crapping in the flower beds.

I wouldn’t be at all surprised if he took his annual S Boat trip to Glyndebourne instead of Belfast this year

However this was Christmas eve, a time for carols sung by the Muppets, and all those Disney characters with loud irritating voices and quacky lisps that John loves so much. I poked, I prodded and I even blew a raspberry on his cheek but he remained fast asleep.

Last year he had been a bit quieter than previous years but was still up, happily unwrapping presents and generally in the Christmas spirit by 8am. Such a difference from when he was a few years younger and none of us slept for days.

Christmas was always something of an endurance test for me and for the turkey. Could I stay awake for four days and nights and could the Turkey cope with having its legs pulled off to be hidden in the most unexpected places?  It was like a gruesome Christmas treasure hunt. Goodness knows why he did it, I think he liked the look of horror on my face one year when I opened the box containing the crackers only to find most of them had disappeared; in their place was a huge turkey leg with  bite taken out of it and the parsons nose still attached. We eventually got wise and opted for beef and pork as our Christmas roasts; the anticipation of finding vital bits of the turkey hidden on the toilet seat became too traumatic.

John still called the roast joints turkey, or “Toyey” as he pronounces and it took him a while before he eventually gave up looking to see if there were any legs on these weird looking birds that mummy called “Bee and Poor”.

It looked as if Christmas 2017 was shaping up to be the quietest on record, at least for our family of three. I wandered downstairs, switching the fairy lights on and generally trying to make everywhere look magical, just as every Christmas morning should look. Bing and Nat were crooning in the kitchen, Dean had started well but had clearly found the Martini and was barely able to join in but hey, it was Christmas. The dining room table had been laid on Christmas eve by order of John who always insists on the full monty. It all looked beautiful, the silver was shining and the crystal glasses were sparkling.

John meanwhile was still upstairs snoring away while Maria Callas bellowed ‘One Fine Day’ in his ears, breaking hearts and shattering precious glassware for miles around. I sat in the kitchen wondering if it was too early to accept the company of Mr Merlot, I looked at my watch, 7.45 am, hmm maybe just a tad early. I declined his advances and put the kettle on to enjoy a nice cup of tea while I waited for the star of my Christmas to appear.

His dad phoned at 8 o’clock “So what’s the plan? I need the timings of phase one, phase two and the eta to back at base” He made it sound as if we were about to invade Poland. “John’s still asleep” I explained, then debriefed him on the mornings manoeuvres. John’s grandfather on his dad’s side had been a military man so I was used to this odd way of communicating. My Uncle had been in the Royal Navy and used to drive his old car up and down the roads as if it were a ship. He would travel by going Fore and Aft, turning Port or Starboard at crossroads and honking his horn 3 times shouting “vessel coming astern.” as he reversed. But I digress…as always.

Right, let’s get back to The Christmas Story and the reluctant star, still snoozing away with Maria Callas.

John did eventually make his way downstairs, hair standing on end like the bloke from Beetle Juice. He peered through the crack in the door, I guess he checking to see if the pile of presents was big enough to warrant him entering the lounge or whether he should just take himself back off to bed. It seems father Christmas had done well, John came in plonked himself down and finally entered into the spirit of the day.

He pointed at various boxes shouting out what he thought was in them. When he pointed at a very long thin present he looked at me and said “Big Clock” and went into fits of giggles. It was a five foot sports kite, or ‘Big Kiy’ as John calls them. He thought his joke was hilarious and proceeded to guess ridiculous items that may be in his pile. He picked up a small box, “Mu-ha-ha aipoo” squeaked the by now hysterical John, shaking the tiny box which apparently contained Manchester airport. By the time his dad arrived for the start of the invasion John was still playing the guessing game and having a fine old time. He didn’t show any disappointment when he opened a present he claimed was The S boat in Belfast and it turned out to be a tube of milky buttons. He just bonked me on the head with the tube.

Christmas was finally being played out as it should be in Chez Elmo.

The rest of the day went to plan, well sort of. I managed to avoid any invasion of Poland, John’s dad managed to successfully get John to his Grandmas…Phase one… and then to my dad’s…Phase two… and arrive back at the house…..base… time for the one o’clock gun. Christmas lunch would be served at 1400 hours . John’s dad was well pleased that his plan had worked. We all breathed a sigh of relief, none more so than Grzegorz Bogficzki the plumber. Phew!

My dad however not feeling at all Christmassy said ” Let’s not have any fuss, we can eat our lunch in the kitchen and watch the squirrels out of the window.” He has become obsessed with the squirrels and gives me a running commentary of their comings and goings whenever he is in the house. I have to confess I love them too but dad is starting to turn into David Attenborough with his constant whispering narrations.

“Dad, for goodness sake” I wailed “It’s bloomin’ Christmas day, the table is laid, the candles are lit and I polished the flippin’ crystal. Can we just leave the squirrels for today?” I stared in disbelief as he completely ignored me and settling himself down proceeded to point out every time a squirrel came to the feeding station. “I’ve counted 10 up to now” he whispered, nodding his head to emphasise the total. “Oh for god’s sake! It’s the same Squirrel dad and it cant hear you because you are inside and it’s outside!” I shouted in exasperation as I plonked two plates and some knives and forks on the table. Then I felt guilty, what did it matter, if he was happier sharing his Christmas with the wildlife then so be it. Twas the season of good will and all that. I looked around to check Mr Merlot was still there to keep me company for the next few hours, I am sure he winked at me.

John decided it was time for lunch. He delivered his order “Sausies, toyey,beas, tayos peas mummy” then ran off down the hall shouting “Up dare peas mummy” and I heard the computer room door bang. I did as I was told and followed John up stairs to see if he would maybe come down and have Christmas lunch in the kitchen with us. John was sitting patiently waiting for it to be served upstairs, he was pointing to the desk to make absolutely sure I knew it was non negotiable. He was watching one of his favourite a videos on YouTube, it’s of a Boch washing machine going through its wash cycle with a commentary by a Dutch bloke, very obviously under the influence of some very wacky baccy. John loves his chilled out friend and clearly preferred eating his Christmas lunch with him instead of with his mum, several squirrels and David Bloody Attenborough.

And so it was that Christmas in the crazy house again produced the unexpected, the unpredictable and was as always unmissable. Johnelmo and his mum hope that yours was too.










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… 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.

How Many Sleeps To Christmas?

“THIRTHEE SEEPS” bellowed John as he hurtled passed me on his way to go and hide in the bathroom. He does this every time I pick him up from Nelsons Croft, he always gives himself away though as he finds hiding so funny that his giggles can be heard all over the  house.
His support worker and I just play along with him, our conversation about how John’s week has been is sprinkled with Pantomime shouts of ” Has anyone seen John Ellsmoor ” followed by hysterical laughter, the seasonal sleep count and then John kindly telling us that he is infact in the bathroom.

He had packed all the really noisy talking toys to bring home, an assortment of singing Father Christmases and enough Christmas cd’s to keep the party going for the entire weekend and beyond. I wouldn’t mind but we already have three big boxes of his CD’s at home, most of which are Christmas songs and carols. I guess to John that the rule still applies ‘You can never have enough’ .

He decided that Mariah Carey should accompany us home and she and John sang ‘All I want for Christmas is you’ for the twenty five minutes it took us to get there, via Sainsbury’s for sweets and for John to remind all the shoppers that it is only “THIRTHEE SEEPS YES OK!”
I think Sainsbury’s staff and their customers appreciated John’s reminders but I couldn’t swear to it.

John is very theatrical when he sings and so when he and Mariah sang the line ‘All I want for Christmas is you’ he poked me in the ribs to emphasise the word ‘You’. Thanks for that John.

I had put our tree up a couple of weeks ago and John is always excited when he sees it for the first time. He stood outside, looking in through the window his eyes as big as saucers. He pressed his nose up to the glass, tapped on the window, stood back, slapped his head, pointed and announced to the whole avenue “Johnelmo Chrimmas twee YES OK!”

I knew that John would be beyond excited as Christmas day was almost within sight, and I wasn’t wrong. “Johnelmo godsend moron, smelly shops?” he asked at 4.45 a.m. on Saturday morning as he lay at the end of my bed licking my feet to wake me up.
I don’t know if you have ever been woken by having your feet licked but its a very strange sensation which your brain finds hard to compute whilst its in sleep mode.

I clicked on the bedside lamp which in turn activated my ears and I could hear John giggling and slurping.
“Eiw gerrofff John, eiw stop it.” I yelled wriggling around to try and release my soggy feet.
“Godsend moron, smelly shops?” he asked again needing confirmation that I would take him to the garden centre near Moreton and then to the charity shops.
“Yes, yes we will go at 11.00 o’clock, now get off my legs and go back to bed, please John”

At the garden centre John was trying to persuade me to buy a Christmas wreath by getting me in a headlock and whispering. Actually he was spitting down my ear, he can’t whisper as he finds it too funny, I try not to cringe as the goo drips down my neck.

“Weeth, mummy door” spat John as he pointed at all the beautiful wreaths on display.
“We have already got one John, Nanny made it years ago”
“Two weeth peas Mummy, dah” he replied releasing his grip on my neck and bounding over to the prickly holly wreaths, pointing at them and then again at a huge sparkly golden star. We haven’t had a star on the tree for years but he was adamant.
“Dah” he said again “Crimmas tree, dah”
“Its too big John and too heavy, the Christmas tree will topple over, and we really don’t need another wreath.”

John walked over to me and put his forehead against mine, looked at me with his huge brown eyes and begged “Peeeeeas mummy, dah peeeeeas” and then fluttered his eyelashes so that they tickled my face. I love his butterfly kisses as we call them and they always do the trick. My heart burst with love and as spit trickled down my neck, I thought how much I love my gorgeous, funny boy. Of course he could have the huge star, surely only the coldest of hearts would refuse.
With John holding the star aloft, we wandered around the rest of the garden centre like a two man nativity play.
“DAH” shouted John “DAH” while  I followed behind without a donkey, a husband or three wise men.

For the entire weekend John needed confirmation every five minutes that I knew how many sleeps it was until Christmas day, cheers John. By midday on Sunday I was suffering from lockjaw from all the teeth gritting I was having to do to prevent myself screeching “Oh for gods sake John! I have told you ten thousand times its twelve sleeps” Instead I laughed manically, gritted the aforementioned teeth and said “Yes it’s only twelve sleeps Johnny boy”
“OLY EHEV SEEPS MUM OK YES!” bellowed John horrified that I had made a mistake and might not realise how many sleeps it actually was and concerned that he might not get his presents on the right day.
“Oops sorry John, my mistake, you are right its only eleven more sleeps”
“Oops no Mummy ok” he replied, letting me know I needed to concentrate more and that mistakes at this time of year are just not acceptable. He then leaned in very close and offered me his cheek to kiss, which I did with extra smooching noises which he loves.
Clearly all was forgiven and I was back in his good books.

We put the star on the tree on Sunday afternoon, I was right, it was way to big and much to heavy. I tried in vain to tie it on, stick it on and at one point considered welding the bloody thing on….ok that’s a lie, I know it would have been too dangerous to weld it on because I haven’t got a welders mask!
John helped by jumping up and down, slapping his head and nearly knocking me off my wobbly chair. Finally, somehow, I managed to get the star to stay in place. We both stood back as I turned the fairy lights on and watched with much groaning from  me, and much clapping from John as the weight of the star caused the tree to start bending very slowly.
I think its safe to say that we are probably the only family in Meols to have a Christmas tree shaped like a banana.

Merry Christmas xx

Father, Son and Holy Goat

John loves it if I ever need to have any jobs done on the house either inside or out. He likes to be ‘involved’ and will helpfully get in everyone’s way and steal any tools that are lying around. He’s good like that.

When we first moved into this house it needed a lot of work and John was in his element. He was only just four years old when he climbed his first ladder and disappeared into the loft to find the Stan the electrician. We could tell when he found him by the piercing screams coming from Stan, who having no idea that John was behind him got the fright of his life when he was grabbed from behind for an impromptu tickle.

He was clearly a very popular electrician because afterwards whenever we needed more work doing he was always too busy!

I must point out that neither his dad nor I knew that John was in the loft, the last time we had seen him he was in the lounge watching The Teletubbies and munching his way through a bag of Hoola Hoops. Naturally we blamed each other for not keeping our eye on him, but in our defence, back then he could creep about a bit like the invisible man. Not so much these days though as he is 6ft tall and weighs seventeen stone, plus he makes too much noise to be able to creep anywhere, but I digress.

John’s favourite tool is, as he calls it, ‘The ammer’ and as a child he had an uncanny knack of ‘finding’ them in our neighbours sheds. I found four in his sock draw one day and had to go around the avenue asking the neighbours which one was theirs. Strangely only three of them were claimed so goodness knows where the fourth one came from.

One day John’s dad had been putting a new picture rail up in the dinning room, we had bricked a wall up between it and the kitchen and the new wall had been freshly plastered. John had stood spellbound as his dad used his hammer to great effect. I videoed it for him so he could watch it all back later, John that is not his dad, that would have just been weird, now of course John does all his own filming. John wanted a go on ‘The ammer’ so afterwards his dad took him outside and they spent a very enjoyable hour knocking nails into bits of wood. John loved it and afterwards it took both of us to wrestle the hammer from his grip. He wailed loudly making it known what cruel parents we were for taking his favourite toy away.

The next morning I was awoke by the sound of thumping, John must be watching his video of his dad putting the picture rail up from the day before. I went into his room to turn the volume down but the tv was off and John wasn’t in his room. Oh no, that could only mean one thing. I dashed downstairs to see John banging lumps out of the newly plastered wall, when he saw me he was quite unperturbed and just incase I was unsure what he was doing, he shouted ‘Ammer, bang’,  made the double thumbs up sign for ‘good’ and thumped another piece of plaster out of the wall.

We never found out where the hammer came from as John’s dad had slept with his under the bed!

Back to present day. As spring is about to be sprung I have decided to get a few job’s done outside. I am having the car port knocked down and investing in a new shed. When John came home last weekend I explained to him what was to happen and that the men would be taking the car port down the following morning. He was so excited I feared for my eardrums as well as the workmen’s sanity.

I had explained to John that in place of the car port we would be the proud owners of a 10×5 shed. John couldn’t believe his luck, sheds are second only to hammers in Johns life. He hooted, hollered and then gave me a bear hug which threatened to render me unconscious….again. As always at the last moment he released me and stood licking my cheek until my pulse gradually returned.

‘So do you want a shed then Johnny boy?’ I asked wiping my cheek on my sleeve. ‘Goats’ yelled John not able to contain himself ‘Goats, shed, yes pease mummy yes!’ ‘What?’ I couldn’t believe my tortured ears ‘Goats! no John we are not getting goats’ but he wasn’t going to give in that easily.’Goats, yes pease mummy, two goats, Johnelmo, shed.’ and then to underline his point ‘Goats, shed, Raby.’

One of John’s job’s on the Raby Hall site at WAS is to look after the animals and the goats are his favourite. He spends a lot of time in the goat shed cuddling them, he even has his own chair in there. Before the chair he would lie down with them in the straw mooing gently in their ears. I think its safe to say that although he has a special relationship with all his animals the goats get his vote. So to Johns mind if we were going to get a shed then surely that means we must be getting a goat. It makes perfect sense to John. He was awake and in my bedroom at 7 a.m. the next morning. He stood looking out of the window to see if he could spot the trailer coming to deliver his goat.

He ‘helped’ the men take the carport down and by helped I mean he kept asking them where the goat was and checking their van in case they were playing a game of hide and seek with it.  When I took them a cup of tea out, one of them said ‘I think John’s lost his coat, we’ve had a quick scout round but can’t see it, its defo not in the van’. ‘Oh don’t worry its not his coat its a goat’  I replied helpfully.

Nothing I said to John made any difference. ‘No goat John, do you understand? No goat in the shed now or ever, ok?’ ‘Goat yes mummy, 12 seeps, shed ok’ replied John. ‘Nooooo goooaaat’ I said, I thought elongating the word might give it more oopmph. ‘Yeeessss goooaaat’ shrieked John finding this new goat game really amusing. I was on the verge of giving him a hammer to maybe distract him but one look from the workmen quickly changed my mind. They hadn’t yet recovered from the fact that I had implied there was a goat roaming loose.

This carried on all weekend, I was traumatised. I waved him off with his dad on Sunday afternoon to cry’s of ‘Goat mummy yesss’ and with an alarmed look on his dad’s face. I breathed a sigh of relief, its exhausting when John gets obsessed with something and although I was sad to see John leave I was glad that the goat saga was over. I made myself a cup of tea and went into the lounge to crash, there on every seat cushion in the room was a picture of Terry his favourite goat at Raby.  John had printed them out on the computer and left them for me as reminders, lest I forget that in 12 sleeps he would be expecting a goat.

Just shoot me now.