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.










A dirty phone call from Marcel Marceau

In recent months John has been regularly phoning me up for a ‘chat’. It goes without saying that I love the fact he is so excited about something that he needs to share it with me. However this presents a bit of a problem; when he was 2 years old he had the frontal left lobe of his brain removed, the part which would be in charge of developing his speech. So John had to find ways of making himself understood, this was and still can be a challenge for us all, particularly John.

John has always been very eager to communicate and his dad & I are constantly in awe of his dogged determination to be understood. When he first started to talk after his operation he would sit or stand in front of us for several hours, I kid you not, repeating a word or phrase with an amazing display of patience hitherto unknown. Meanwhile we worked ourselves into a frenzy shouting out random words as if we were contestants on the game show ‘Give Us A Clue’. When and if we finally guessed the right word or phrase John would jump up and down squealing with delight, clapping and slapping himself, his dad and finally me, on the head. Then it would be straight on to the next word. We on the other hand would be crying with the stress, blaming each other for not guessing what the word was two hours ago, and finally reaching for the wine.

Being the resourceful lad he is he realised that he needed to speed up the time it took us to understand him. So he developed a method of communication consisting of him still imitating words, which rarely if ever sound like the word he wants to say but also combining these words with gestures and bits and bobs of Makaton sign language. He also makes some signs up himself which only serves to confuse us even more. If all else fails he will play songs to us, stopping the song on the word or phrase he needs or will find pictures in books, magazines etc that give some indication of what he is trying to say. When you put all this together it eventually becomes clear, well not always but most of the time.

You see sometimes John tricks us by having one word for three entirely different things. For example “Debri”  This could mean ‘Batteries’, ‘Debbie’ or ‘Sainsburys.’  However he could also be saying ‘Would Aunty Debbie please take me to big Sainsburys for some new batteries’…..More wine anyone?

Joking apart John has made us all very proud by the way he has fought to be heard over the years. Anyone who knows him well will be able to understand what he wants or more importantly what he needs. He is always very patient when he isn’t being understood but after a while his patience will turn to frustration, leading to anxiety. Consequently there is no point in John having a support worker who doesn’t fully understand what he trying to tell them; this would only lead to him becoming frustrated and unable to cope. Thankfully the team at Nelsons Croft work very hard with all the clients to ensure they are understood and their needs met.

So what’s the big problem? I hear you ask, John has clearly worked out a way to make every one understand him by using these various methods of communication. I agree, and it all works wonderfully well….but alas not over the telephone. It’s like having a conversation with the famous mime artist Marcel Marceau but without being able to see him! As pointless as the ventriloquist Peter Brough’s radio show in the 1950’s. He was very popular and I am not taking the Mick but no one would know if he was moving his mouth or not. The whole point surely, of being a ventriloquist!

So, there I was one evening watching the telly when my phone rang, well it didn’t actually ring as my ring tone is ‘Sherwood Forrest’ and its sounds a horn to let me know Robin Hood has arrived, but I digress. It was a mobile number I didn’t recognise. When I answered there was no one on the other end, just heavy breathing and the occasional grunt. I tried again “Hello, hello, helloooo” No answer just more heavy breathing and the occasional “Ugh”. I realised straight away that it was a heavy breather, probably a pervy heavy breather at that, what with all the grunting and all…..eiw!

I was also secretly excited, well its been years since I had been on the receiving end of a dirty phone call or even a wolf whistle for that matter. Age does this to a woman, we eventually become invisible. Having said that I was on the train a few years ago and a man next to me started breathing very heavily and fiddling in his pocket, I was about to slap the dirty old bugger but it turned out he was having an asthma attack and was trying to find his inhaler!

Anyway I digress, again. Back to the phone call. “Is any body there” I said, sounding like Derek Acorah trying to summon up a spirit. “Ugh” came the reply followed by even heavier breathing. “Oh ffs! I am going to put the phone down now, I’m trying to watch telly and you need to get some help mate.” I was just about to click the phone off when a voice yelled “S Boat!” there was no mistaking that voice “John” I squeaked, questions running riot through my mind. How did he know my number? Whose phone has he pinched? Where the hell is he?

“John? Is that you?” Stupid question I know but I had never had a phone call off him before. All I got in response was the sound of him grinding his teeth. It’s an awful sound but he does it all the time. “Say Yes or no John” “Yeth” replied my obedient boy. “Have you phoned mummy?”  “No” replied my gorgeous boy. “Well who did phone mummy then?” I asked. “Theve” confessed John the snitch. Oh right, so Steve phoned mummy and handed you the phone, is that right? “Yeth” said John. Well that’s cleared that up. “John, why did Steve phone me?” There followed a very long silence during which much grinding of the teeth could be heard followed by muffled sounds of someone trying to wrestle the phone off John.

“John can you put Steve on the phone, there’s a good boy” Several minutes went by as John thought about it. More grinding of teeth. “Ooo Bidge” yelped John followed by “Yehaaa!” A faint voice in the background, presumably Steve, informed me that John was waving his arms around. I tried to decipher the words. “Ooo Bidge” and what it might mean accompanied by all the arm waving. “Steve” I shouted hoping he could hear me, “What is John doing?”  Steve could be heard trying to wrestle the phone off John without success. “He wanted me to phone you so he could tell you about his day” he managed to gasp before he succumbed to a headlock.

“Ooo Bidge” repeated John. “Bridge up?” I asked, it didn’t sound like ‘Bridge up’ but because I couldn’t see him I couldn’t tell what he was gesticulating. “Are you saying you have been to Bridge up John?” Just so as you know, Bridge Up is the road bridge which rises up to let the ships in and out of the Mersey and into the Locks in Birkenhead. One of John’s most favourite activities. This time the teeth grinding was very loud. I guessed it wasn’t ‘Bridge Up’ after all. “Steve!”  I yelled, what’s he doing now? “Waving his arms around in front of him.” replied an increasingly confused Steve. He knew it was going to be a long night.

“Elephants? Maybe he is saying elephants and is telling me he has been to the zoo?” I said, unhelpfully. There was no sounds from either Steve or John.  “Eh-e hant yes!” Exclaimed Johnboy who was now fully engaged in the guessing game and could feel a visit to the zoo coming on.

“John” I said sternly, are you saying Elephants. Yes or No. “Yes, No” replied John unhelpfully. “What then?” I was getting more confused “Pain” replied John. I could hear Steve shouting in the background. “He is waving both arms about now as if he is at a rave. Or maybe he is in pain?” Bless him he was trying his hardest. “Does it look as if it’s an elephants trunk?” I enquired, “You know one arm waggling about in front of his face, trunk like? “Steve had been rendered speechless, John giggled and continued to wave his trunk about. “Has he been to the zoo?” I was sure it had something to do with zoos. “No definitely two arms, aargh gerrofff John” shouted Steve as John, helpless with excitement tried to squeeze the life out of his patient support worker. “He hasn’t been anywhere near the zoo.”

“Apoo” shrieked John suddenly. Airport, that was definitely Airport “Steve hang on a minute I know what he is on about its “Airport”  “He said Elephant before” said Steve “So how can you be sure?”  “Because” I said somewhat impatiently, “He only waves one arm around for Elephant but waves two around for airplane”

I am still not entirely sure whether I had managed to understand what John wanted to tell me but between you and me I think he had been to watch the bridge go up in Birkenhead before going to the airport on an elephant.  What a fantastic day out, no wonder he wanted to phone me up to tell me all about it!.

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.

“There Is A Voice That Doesn’t Use Words, Listen.”………  Rumi

I haven’t written a blog post for months because……because for some time, due to no fault of his own John’s world has been spinning off its axis, scattering anxiety and misery at every turn. He tried, god knows how he tried to dig deep and believe that things would get better, that somehow his mum would be able to make it all right. Fix everything. Fix him. Make others listen. Make everything ok again.

However I couldn’t make it better but not for the want of trying, believe me.

Eventually, sickeningly, John broke; he thought no one was listening even when he was, in his own way, yelling at the top of his voice for help.

In truth many people were listening but sometimes cries for help fall on deaf ears, especially if those cries are misunderstood because they don’t have a voice. People with communication problems have to rely on their own methods of communicating and behaviour is the most common and when pushed to the limit its also the most damaging to the person needing to be heard.

John’s behaviour had been telling us for a very long time that he was scared, anxious and reaching the end of his tether. His dad & I did everything we could and we knew we were running out of time. John was breaking all of his favourite things in an attempt to get someone to listen. Eventually he no longer trusted me because I hadn’t been able to stop his world spinning, therefore he lashed out at me. John’s final call for help, letting us know that things were so bad for him that he would have to break his mum, his most treasured belonging of all. He knew that only then would he be heard. Absolutely devastating for him but it was his only way.

I was unhurt, just unbelievably sad that John had been pushed to the limit.

The fall out from that was that he no longer trusted himself and didn’t want to be alone with me incase it happened again. All his usual pleasures became painful, he couldn’t even go away on our usual family holiday to ‘Abersoch’ which as you know isn’t really Abersoch but Caernarfon, second only in importance to Christmas in his calendar. His weekends home were spent hiding away in his bed.  When I asked him why his words broke my heart. Two words….”Mummy sae” John speak for ‘Mummy is safe’ He was telling me that if he stayed in bed, wrapped up in his quilt, blinds down and curtains drawn then I was safe from him. That will haunt me for the rest of my life.

Immediately the people who could help him did so, and they did so very quickly. Strategies were put in place to best support him and to gently restore his confidence.  In addition his support team at Nelaons Croft were fantastic and rallied around him making sure that he felt as safe as he could under the circumstances. They were as upset as we were to see him so broken. They were also a great support to me and I can’t ever thank them enough.

The good news is that with a supreme effort from everyone, none more so than from John himself, he has gradually settled  again and is starting to enjoy his life once more.

In June he had a very special trip on his beloved ‘S’ Boat accompanied by two of his favourite friends Kelly & Dale. They had been promising to take him for a few years after hatching a tipsy plan one Firework Night, this seemed to be the most appropriate time to put that plan in motion and we knew it would give him a boost. We were right, he loved it.

I will forever be in debt to Kelly and Dale, they gave him such a wonderful 24 hours, when I picked them up at 6.30 a.m the following morning I could tell they had been awake for most of it! Two very special people indeed.

This was the beginning of his journey back to Johnelmo mode, there have been a few hiccups along the way but I am quietly confident that we almost have our boy back.

Lessons have been learnt by everyone, not always easy ones but definitely important ones.

So, if your loved ones are displaying unusual or challenging behaviour whether or not they have autism, listen carefully to what they are trying to tell you, I guarantee that it’s something important.

The A Club

A friend suggested last year that I write a blog post talking about life with John from a parent’s perspective. The serious and not so nice bits and pieces of life with a child with autism that most of us tend to keep under wraps.

For example our feelings from the first moment we realised that we had a child with some additional needs that we hadn’t bargained for. The not so pleasant things we have to endure and how you deal with the blows so that you are able to pick yourself up to face another day and so on. I have thought long and hard about writing this as the blog is mainly about the positives in our life but it’s also about the reality, so maybe this post does have a place. You tell me.

It’s a longish one so maybe grab a cup of coffee and a Hob Nob.

When I was first pregnant with John I never really thought that things might go wrong. I hoped he would have his dad’s nose and my hair and then at least he would have a fighting chance of being reasonably good looking.

One day, about six months into my blissful pregnancy my mum jokingly mentioned that she hoped the baby didn’t have ears like my dad as they stuck out. I had never noticed them being sticky out but once she mentioned it I couldn’t focus on anything else. How could I have not noticed them before, they were huge!

Come to mention it, John’s other Grandfather had enormous Dumbo-like ears with long flappy lobes; thinking about it so did his dad!

Oh my god, what chance did I have of a normal birth, surely with enormous sticky out flappy ears like that he would get stuck. We would need a vet with a rope and a bucket of soapy water.

Suddenly I worried about all his facial features, would his eyes be in line, would he have a nice chin or an overbite and three sets of teeth. I went from a calm mother to a mad woman believing I would be giving birth to a child with every facial deformity known to medical science. His dad on the other hand only worried that there might be something wrong with his brain. I laughed it off, what on earth could go wrong with his brain. It was his ears he should have been worrying about and I told him so, often.

As soon as John was born I remember shouting “His ears, do they stick out? How big are his lobes? Are they flapping? Which way are his eyes facing? Has he got a chin?”

The midwife explained to his dad that it was just the drugs, his dad said nothing, he was busy organising a Mensa test to find out what his IQ was.

If our only problems had been that our gorgeous boy resembled Dumbo, we could have them pinned back!

John’s autism didn’t come to light for about eighteen months, however we had been kept on our toes during that time coping with his severe epilepsy and a brain deformity known as Cortical Dysplasia which had resulted in a large benign tumour growing in John’s left frontal lobe. This left him paralysed down his right side and with uncontrollable seizures.

His dad never once said I told you so and for the record John has normal sized ears, gorgeous eyes, a lovely chin and the right amount of teeth.

I have written in detail about this phase in john’s life in a previous post entitled ‘Reflections of a Miracle’ you may like to have a read, just scroll down the site. I won’t go into the emotional rollercoaster of those years but here is a brief summary of what he went through.

After two years of various diagnoses and every anticonvulsant on the market, John’s only hope of a decent quality of life was an operation to remove the mangled bit of brain that the surgeon casually called a tumour. The word sent shockwaves through us all; cortical Dysplasia although a mouthful was less frightening.

The operation was eventually performed at the Mawdsley hospital in London and was a complete success. John’s seizures stopped immediately and his paralysis was instantly reversed. For the first time he could move all his limbs and the light of life shone from his eyes like a beacon. Two years of intense heartache was now over and we looked forward, somewhat naively, to getting on with our lives.

As I said, I won’t go into any more detail; I will leave it up to you if you would like to read the above mentioned post. Instead I will concentrate on the effects that autism had and continues to have on our lives.

John recovered quickly from his brain operation, much more quickly than his dad or I did. While John rushed about on his new found legs and threw things all over the house with two arms that worked instead of just the one, we found ourselves in post op shock. I guess we experienced a bit of post traumatic stress as the enormity of what life was throwing at us started to seep into our consciousness. We cried a lot, laughed maniacally and inappropriately. We alternately hated eachother with a passion and loved eachother intensely. We had been through a war with an unseen enemy and turned the battle on ourselves. Apparently it was all perfectly normal behaviour for two people going through what we had experienced, we know that now. At the time it was hell.

Immediately following our return from hospital John became hyperactive, infact he didn’t sleep through the night for the next five years. None of us slept. We took it in turns staying awake with him and we were left exhausted. John preferred to sleep for just two hours, two random hours each day. I only worked 2 days a week at that time so felt it was up to me to do most of the waking nights. This turned me into a zombie. John’s dad was brilliant, working full time and yet always willing to dig deep when I couldn’t function any longer. This started to become more often. Come Halloween I didn’t need any grotesque costume to scare the neighbours, I would just pop my head out of the door and they would run screaming.

If I tried to play with John he would push me away and never ever wanted to be cuddled by me. He did however interact with his dad and there was relief for us both in that. They had a loving relationship where as my role in Johns life was purely functional. I adored my gorgeous boy and so felt bereft at not being able to hold him without him wriggling and screaming.

He was very demanding and rushed around the house all day yelling, never staying in one place and leaving a trail of destruction in his wake. He banged toys on every surface; opening doors and continuously banging them shut. He threw whatever he could pick up across the room and screamed in frustration most of the time. I thought I had gone deaf once because I realised that it had gone quiet; it turned out he had escaped while I was in the toilet.

John continued to escape for the next ten years. He even escaped one Christmas afternoon just before lunch but I was so consumed with the turkey that I didn’t notice.

He has been brought home by kind neighbours, complete strangers and by the police, twice. I can laugh now but at the time I was frantic with worry; the people returning him to me, once they saw the jabbering wreck on the door step seemed to sympathise with John for wanting to get away.

I felt ashamed at not enjoying motherhood and became envious of every mother who had what appeared to me to be a perfect life.

I am also ashamed to admit that I became intolerant of what I regarded as whingeing mothers who complained if their children were teething or had a runny nose and were disturbing their sleep. I developed a very effective tut and glare and kept it for whenever I heard a moan or whinge within five miles. People started avoiding me.
I had no energy, no patience and very little strength left. Everything seemed too hard, I had a prolonged attack of the ‘Why me-s’ and even questioned my faith in god.

God and I were still on good terms in those days, now we don’t even exchange Christmas cards.

I couldn’t work out what I was doing wrong and why John wasn’t responding to me in any way other than for food, drinks or nappy changes. I seemed invisible to him. I remember John’s dad and I arriving home from work one evening, John was being looked after by my mum and dad. John hadn’t quite mastered the art of walking. We both walked into the lounge and John was all excited and dashed towards us on all fours, did a big body swerve right past me and headed straight to his dad. It felt like an arrow straight through my heart. I wept on and off for the rest of the evening.

I realise this all sounds very me me me and indeed it was. I felt that it was a constant uphill battle just to get through each day and all for nothing. My son didn’t give a hoot if I was there or not; it was so unfair, moan, whinge…. ad nauseam. I was consumed with self pity which is most unattractive but that was how I felt at that time. I am certain there are countless other parents who have felt exactly the same in similar situations.

I am happy to report that this phase did come to an end. I had an epiphany of sorts, scheduled a meeting with myself and was threatened with the sack if I didn’t pull my socks up. What use would I be to John if I didn’t get some perspective on the situation, realise what was important, stop moaning and bloomin’ well count my lucky stars. Never mind all this ‘Why me’ ‘Why me’ malarkey, ‘Why not me’ for goodness sake.

John’s dad clearly thought I had been on the fortified wine or something, he didn’t say anything but he kept looking at me sideways and appeared unnerved at this calm, mother earth type who had suddenly entered the crazy house.

The good news was that she was here to stay.

Two days a week John and I attended a special needs group at the Clatterbridge Child Development Centre and he was as good as gold. It was a break for me to be with other mums who were in the same sinking ship as well as the various therapists; all who seemed to have the magic touch with my gorgeous little boy and I clung to their wisdom like a drowning man to a life raft.

We were given a place at Clatterbridge nursery when John was nearly three; it was the beginning of him being supported properly and of his dad and I having people around us who helped us learn a bit more about autism.

It was his teacher who first confirmed that he was displaying signs of hyperactivity; we had already guessed as John was like a whirlwind. She showed us a video of him playing. He whizzed around the room not staying with any one activity for more than a couple of seconds. I was able to talk to her about his behaviour and my own realisation that I wasn’t going to be able to help him develop without some expert help. I think that is when the word Autistic was first mentioned. I felt a wave of relief that maybe now someone had given ‘It’ a title, John would finally get some help.

As parents we were now members of The A Club and there could be no relinquishing of membership. It may help you to feel that you are not alone but no one would join it by choice.

The rules of The A club are:

  1. There are no rules
  2. Ask for help
  3. Be prepared to fight for everything you are entitled to and which every mainstream child gets automatically
  4. People will stare, get over it.
  5. Don’t give up
  6. Make your own rules.

We didn’t get a formal diagnosis until John was much older, without it John would not have been able to get into what was then called Wirral Autistic society, now known as Autism Together.

We didn’t suddenly become experts over night, it’s a continuous learning curve but we definitely had more of an understanding. We muddled through, sometimes with good humour and sometimes with heartbreak but we never stopped trying. Throughout John’s school life we gradually learned how to be parents of a child who is constantly being bamboozled by a world that they struggle to make sense of. Stanley Special School definitely unlocked John’s potential and I can never thank them enough for giving him every chance to achieve it.

As parents we got it wrong more times than we would have liked, however we knew we had help from the schools if we needed it. That support was a most important life line to all three of us.

Parents of children with special needs of any kind have to develop tough skins from early on if they are to survive the slings and arrows of outrageous misfortune and idiots.

On one hand John has lots of quite typical behaviours associated with his autism, not always socially acceptable. On the other he is no different to you and me. He has the same needs and the same desires. He is often treated differently though, fortunately less so now that there is so much more awareness and understanding of the condition.

During his early years I was horrified when one or two mum’s moved their child away from John at play group, presumably so their little darlings didn’t catch autism. It compounded my feelings of isolation at that time; it’s also heartbreaking to watch your child sitting alone at an age when children don’t and shouldn’t have a perception of difference anyway.

Fortunately this was the exception not the rule, most mums were lovely and very supportive.                                                                                                                                       Thankfully John preferred being on his own and wouldn’t interact with other children anyway; an early sign of autism. It still hurt though to be left feeling as if your child had the plague. Shame on those who teach prejudice alongside the nursery rhymes.

If John is happy he gets loud, shrieks with laughter and jumps up and down slapping his head and rubbing other unmentionable parts. He looks like an England fast bowler trying to get a good shine on the ball before bowling out an Aussie. It’s quite challenging to ask John not to rub himself without drawing more attention to what he is doing! I gesticulate a lot but this can be misconstrued as me joining in so now I try saying ‘Don’t do that John…leave it alone’  but that’s just as bad and pointless really as after thirty seconds he just carries on regardless and oblivious to the stares and mixed reactions.

We got used to all the stares quite quickly but never to the rude comments and abject ignorance of people who should know better. We understood completely how strange John’s behaviour must have looked and indeed still does. I was never too far away from punching the perpetrators on the nose.

OK so I’m still not completely over it but I am getting better at just giving them my much practiced ‘Death Stare’

Toileting, potty training or whatever you like to call it is another difficulty that parent’s like us don’t really talk about. John was dispatched with his dad to ‘Watch’ how it was all done; he seemed to enjoy the whole demonstration but developed a penchant for only weeing in plant pots.

I am absolutely sure he never saw his dad do that but…..

All in all at the age of six he had progressed from plant pots, through to grids, then the bath until finally he made friends with the toilet. They became inseparable as he obsessed with the noise of the flush. He would stand for hours if we let him, flushing, taping the noise on his cassette recorder and roaring with laughter. He could spot a toilet a mile off and we spent many a smelly hour in public loos while John flushed and I wet wiped and disinfected him within an inch of his life…eiw! He is still fascinated and now flushes while he is having a wee so that he gets splashed with the water, such fun.

As for number two’s, for want of a better word, that took a good while longer. John loved the stuff so much that he treated it like play dough. A favourite game was to take his nappy off as soon as he woke up but before I could get to him; he would whirl it above his head and create a variety of patterns on the ceiling, walls, carpets, curtains and bedding. Damien Hirst would have been proud of his creations.

Several times he smeared it all over his room including the windows and deep into the carpet. Goodness knows where it all came from, well obviously I know where but there was always so much of it for a young child. The sight and smell will never leave me. I can hear the collective intake of breaths from those of you who know how that feels. You have my deepest sympathy.

We had to renew the carpet, the curtains and the bedding on each occasion and I know we weren’t alone in finding this behaviour hard to cope with. It’s beyond revolting even when it’s your own child and you rarely if ever tell anyone outside of your very close family. It always brought me to tears and I found it to be one of the hardest things at the time. I know that I am not alone in thinking that.

The good news is it did stop, as abruptly as it started, happy days!

I learned later that it is very difficult for someone with autism to distinguish something that is expelled from their body, i.e. poo, from their own internal organs etc. Therefore they might not feel able to let go incase their insides fall out. It can take years to be confident enough to use a toilet. Some people never do. I can see why now, as always hindsight is a wonderful thing but to my friends whose children have autism and are still not fully toilet trained it is a huge thing to deal with and has a big impact on their daily lives. Whenever I meet other parents with young children ‘ first question they ask…’How old was john when he was out of nappies?’

Families like ours depend enormously on other people; carers to help take our children out for a few hours so we can have a break, therapists of every kind, support workers, respite workers, social workers, psychologists and Societies such as Autism Together (formerly Wirral Autistic Society) with their hundreds of staff. Without all these people family life for us in the club can be extremely difficult and at times nigh on impossible.

We grow to rely heavily on their services even for the normal everyday pleasures enjoyed by most; for instance going out for a meal, just the two of you. The amount of planning that goes into such a simple thing is enormous.

The stress of making sure the support workers are booked, keeping your fingers crossed that they turn up because it’s never 100% guaranteed, and will they be on time? Praying your child doesn’t refuse to go out with them even if they do turn up. Hoping they are ok while they are out and not having a meltdown, hitting anyone or for whatever reason leaving the poor support workers with no option but to bring them back.

If you are lucky enough to actually get to the pub or restaurant there is a good chance you will be too stressed to eat. I guess that will ring true with many of you.

Challenging behaviour gets harder to cope with the older the child gets. There is no way you can just pick a 17 stone man up and remove him from a potential inflammatory situation if he refuses to cooperate. John has been fairly typical in terms of what he can and can’t cope with and his obsessions and rituals have remained the same for nearly 26 years. He adds a few new ones now and again just to keep us on our toes.

His challenging behaviours have been difficult to deal with at times but not surprising given that having autism is one of the biggest challenges anyone will ever have to face. There is nothing easy about being attacked by your child in whatever form that takes and believe me there are many. It is equally upsetting for John when his autism overwhelms him as it is for us to have to watch him disintegrate.

Then there is the need for routine which sounds nothing until you realise that the whole family is controlled by this need. People with autism are egocentric, life has to be lived their way if they are going to have any chance of coping let alone enjoying themselves. As a parent we become so trapped in the whole thing that we start needing the routines ourselves and panic if anything goes wrong. We are constantly living on the edge in case our child ‘ cope and has a meltdown. Actually ‘A meltdown’ isn’t a good description of their behaviour during such times, it makes us think of a slow, gentle decline when in reality it can be fast, fierce and is destructive both in terms of their own mental and physical health.

For someone with autism to feel safe and secure enough to be able to function they need everything to be ordered. Things need to stay the same. We decorated John’s room in exactly the same colours for ten years and he will still only dress in certain types of clothes. He only likes certain activities and so every day is groundhog day. People with autism need to know when something is going to happen, how, where, how often and why. They need constant reassurance about it so you will have to go through it at least every 10 minutes to reassure them nothing has changed. It’s exhausting and very stressful both for the person and for the parent.

This repetition day in day out should be used as a form of torture should our Military leaders ever capture the leaders of ISIS, they will fess up to all their secrets within a couple of hours, or shoot themselves.

As parents we can fall into the trap of making everything too rigid a routine,we want our children to feel safe and secure thus preventing a meltdown. Should we fail we are likely to get hurt and our child may hurt himself, on purpose. Infact we end up shrinking their world without realising. We believe we are doing what is right but really we are just hanging on to an impossible situation by our finger tips and in all probability making it worse in the long term.

At least that’s how it was with John. Scared of him lashing out at me and therefore unable to drive him anywhere, our world shrank to almost nothing. I depended on an agency to send support staff to take him out three times a week for a few hours, without them I would have gone under. I know that sounds dramatic but its true and I meet families all of the time who are drowning.

We are very lucky that John was funded by the local authority to be able to be supported by Autism Together after leaving school. It was a battle to get the Social Workers to approach them but they saw sense in the end. It was an emotionally draining time for us all however it marked the start of a new life for John.

Again, I wrote a blog post a couple of years ago about this transition and the devastating reasons behind it.It was difficult to write because John was really struggling and I lived in fear of him. So rather than repeat myself if you would like to read it just scroll down, the post is entitled “Crying is alright in it’s own way while it lasts but you have to stop sooner than later, and then you still have to decide what to do” C.S.Lewis. It is the most popular post and also one of the most moving; at least that’s what people tell me.

So, I think this is an appropriate place to stop with all this not so no nice stuff. Please let me know if you think it has been right to talk about the hidden side of parenthood for those of us in The A Club.

John still struggles to cope with his autism from time to time and it’s never easy to stand by and watch, knowing how troubled he must feel yet also recognising that I can’t always help him. Having said that his life is considerably better most of the time, thanks to the fantastic support of his team at Nelsons Croft. He loves them all and they love him back.

To all of you parents who never wanted to be a member of this club in the first place, I applaud you. Your lives are bizarre, your nerves are in shreds and you never know a moment’s peace…..but…..your kids are amazing, they are talented, funny, quirky, loud, embarrassing and exhausting.

You will never laugh as loud as when things are going well or cry as much as when things are going pear shaped. Life for those of us who live with or along side autism, is exaggerated mayhem with a smattering of madness thrown in.

You will meet people who will change your life as much as you will change theirs.

When you listen to other people’s stories you will reflect and thank god yours isn’t as bad!

For those of you who are able to look after your children at home, stay strong and be thankful for being able to kiss them goodnight even on the worst of days; they are coping with things you could never imagine.

For those of you whose children, like John, are now living happy lives, safe and secure in an environment where they can develop and progress, know that you have done your very best. You have given your children roots from which to grow and wings to set them free.

There can be no greater gift.


Animal magic

John has an affinity with animals which boarders on telepathy; except dogs, he hates them. He can’t cope with their barking, yapping and will freak out if they start jumping up at him. Dogs on the other hand love him.

Many is the time that John has been happily stood by his favourite concrete post outside Sainsburys, minding his own business and chatting to the sliding doors. Well maybe chatting is stretching it a bit, he just shouts ‘Sly’ and as if by magic the doors slide open. What he doesn’t know is that I am walking up and down inside, triggering the sensors and recieving some very starnge looks.

Anyway where was I….Oh yes, many a time a dog has turned up with its owner, who ties it up outside the shop, to John’s much loved post! How very dare they. So pleased is it to see John, that the usually well behaved pooch will let off a volley of barks and start jumping around as much as its leash will allow. In his haste to get away from the dog, John will have jumped into the back seat of the nearest car that has somebody sat in it and shouting ‘Door, now, peas mummy’ to the poor unfortunate occupant. My favourite time was when he tried to get into the security van collecting the days takings. The terrified guard assumed he was being robbed by a wild and confused young man who not only wanted his money but who also thought that he was his mother. I hope he carried a spare pair of trousers in the van.

On our drive home from Nelsons croft on Friday John kept asking me if he could go to the zoo with Annie, at least that’s what I thought he was saying. “Zu, Ani mommow” he kept repeating over and over. It was difficult to hear exactly as his head was out of the window as per usual but it certainly sounded as if he wanted Annie to take him to the zoo the following day.

I pondered on who Annie could be, possibly one of the new support workers at Nelsons Croft or maybe a new resident. I pulled Johns arm to get him to come back inside the car “Who is Annie John, is she a new person at Nelsons?” John became very animated and started bouncing in his seat. “Yes Ani Neso” he yelped and collapsed into fits of laughter which lasted all the way home. Every time I tried to chat to him he just kept confirming that Ani was at Nelsons croft and judging by his inability to calm down she was clearly a very amusing girl.

Once home John sat in the car and put his arm around my neck pulling me close, slowly tightening his grip in a Pythonesque kind of way. “Ani pici mummy” he bellowed down my ear. I rasped and wheezed that I didn’t have any photo’s of Annie but we did have lots of the zoo. “Yes, pici Ani” confirmed John nodding vigorously  adding “Fut, Ani” then stuck his tongue in my ear. “Eiw, cheers John” I tried to shake my head to avoid the spit pooling in my ear canal but I couldn’t move.

Barely breathing, deaf and very confused, I had absolutely no clue what he was on about. He was gesticulating with his free hand but I was at such an awkward angle I couldn’t make out what he was signing. “Fut fut fut” insisted John “Pici ani NOW”  he released his grip on me and leapt out of the car like a gazelle but not quite as graceful. “Welcome home John” shouted a neighbour and then turning her attention to me she smiled and said “I saw the two of you having a lovely cuddle there in the car, he loves being home with his mum so he can catch up on his hugs.” I smiled and nodded, I couldn’t agree more.  John’s cuddles are the best no matter what animal form they come in, Bear hugs or Python crushes, I love them all.

John was a man on a mission and immediately locked himself in the computer room, shouting about Ani and the zoo and making the “Fut Fut Fut” noise again. I was barred from the room, John was busy searching through his thousands of photos stored on his computer. I assumed he was looking for one of Chester zoo, probably the monorail as that’s a particular obsession of his.

After a short while John shouted “Up peas mummy” and started banging his desk and yeeehaaa-ing in glee. He was pointing at a picture on the computer screen “Ani Ani” He had found a picture of Annie his favourite cow from the local farm.More from iPhone for john 020

Well I it was obvious now, he had been asking to go to the farm to see Annie, and the girl who looks after the cows is called Sue, nothing to do with the zoo at all. Easy you might think, however he hasn’t wanted to see the cows for so long I had completely removed the names from my ‘Johns weekend activities menu’ which is stored in my overloaded brain. In my defence he didnt mention the word farm or I might have made the connection. By me asking him if Annie was a new person at Nelsons Croft, John had just become excited at the thought of his favourite cow in all the world living with him. He knew it wasn’t possible but the thought was so enjoyable that it was worth hanging on to. I asked him what “Fut” was and what it had to do with Annie. Quick as a flash John clicked onto the next photo and it was…..

More from iPhone for john 167

…..his dad’s foot.

The photo was taken on holiday in Abersoch in 2012. I Know, I know! it’s a weird link and what’s  Johns dad’s foot got to do with a huge, mostly white cow, and a mad one at that?

John, like many people living with autism has a photographic memory. He never ever forgets anything he sees, or where he puts things or what anyone tells him. That is why we have to respect his gift and never doubt him when he tells us that something important is missing from his room. We never tell him we will do something with him or for him unless we absolutely can and will carry it through. Of course there will always be an occasion when something happens outside our control therefore it is important that strategies are put in place to help John cope at such times.

John knew that the photo of Annie was next to the photo of his dads foot, it was in a folder of photographs taken on my iPhone and inspite of the many thousands of photos on the computer he knew which folder to look in and which photo would be next to it. It took him only a very short time to locate it and that included the time it takes my ancient computer to fire up. Do you want to know something else my friends? He knows the position of every single photograph on that computer. Bloomin’ mind blowing.

Annie wasn’t the calmest of cows, a bit of a rogue when all said and done but John loved her and she loved him back in spades. Notice I used the word ‘Loved’, sadly in the time since John last saw Annie she sadly died. I didn’t find out until we went to see her at the farm. This was one of those occasions that we had no control over and couldn’t prevent. I will be honouring Annie and John’s relationship in a separate post, theirs was a special bond and it is deserving of a post all of its own.

Suffice is to say that we told John that Annie hadn’t been very well and that she has gone to Wales to join several of his favourite animals from the Raby farm site. It’s difficult to explain the concept of death to John, so it was decided that he should be told that they were off for a very long retirement into the Welsh hills. Up to now, including Annie, three goats, a couple of geese, several hens and Hammy our beloved hamster have all made their way along the A55 to Welsh heaven.

I wish John was obsessed by playing cards, what with his memory and my face we would be world famous Poker champions by now.



Dear John…..

Johnelmo today is your 28th birthday, happy birthday you gorgeous boy. My how time flies. 

Twenty eight years ago I was in hospital with crippling stomach pains brought on, I thought, by eating a whole family size apple pie all to myself. I was convinced it was just wind, fortunately the midwife and your dad were a little more up to speed with the difference between wind and labour pains. You made your grand entrance at three minutes to midnight and it was love at first sight. Your dad and I were completely besotted, so much so that the doctor had to intervene as we wrestled with eachother for turns in cuddling you. I think he was a bit concerned when your dad said that as a rugby player he knew how to catch balls, rarely if ever dropped them and that babies were very similar in shape!

Your first twelve months threw many challenges your way and you never ceased to amaze us with your resilience. We were so proud of the way you coped with the many visits to hospital and the horrible intrusive tests you had to endure. The worst for me as your mum was the lumbar puncture when you were only 4 months old, the doctor looked about 18 and his hands were shaking so much I nearly took the needle off him. I couldn’t bear to hear your screams and my heart broke into tiny fragments. I was bundled out of the room by two burly nurses, only to fight my way back in to you. We didn’t know it then but a lumbar puncture would the least of your worries, you were to face a lot worse than that in the following two years..

Your first birthday was marked with a big party at home with grandparents, aunties, uncles, friends, lots of other babies and small children plus their parents. Well strictly speaking their mothers, most of the dads were playing rugby but would be coming on afterwards. We had vast quantities of party food which resulted in lots of hyperactive little friends, frazzled Grandparents and sloshed mothers. I had made sure that there was enough wine to get us all through the day, I think I found that tip in my ‘How To Be The Perfect Mother’ book although I couldn’t swear to it.

We had bought you a big Postman Pat cake, you had already proved to be a big fan of confectionary and you loved it. I was just glad that someone in the room had a bigger nose than me. (Have you seen Postman Pats nose readers? its huge! Even more alarming is that all the children in Greendale have the same nose, so what does that tell you about Pat eh! Its not just letters he’s been putting through Mrs Goggins’ letterbox……………. anyway I digress.)

You my bonny boy were having a fine old time, loving the presents and all the balloons. Presents and balloons would be a theme that would run throughout your next 28 years. Your little friends were just as happy and while the grandparents ate the vol au vent’s and the mummies drank more wine, no one noticed that the dads hadn’t turned up. They were still at the rugby club downing some dutch courage before attending what to them must have been the party from hell. Eventually it was time to light the candles on your cake, we all stood around and sang happy birthday while you screamed blue murder. That set all the little ones off again and before we knew it everyone’s children were howling like banshees. We sang louder, you screamed louder and the mummies reached for the wine. You hated that song for years and I still have no idea why, maybe it triggered a memory of your first party.

After about fifteen ear splitting minutes everyone had calmed down, two granddads were dozing in their chairs. Each was still wearing the dreadful party hats that your nana had made from old egg boxes and tinfoil; insisting that they wore them. Your granddad had apologised when he arrived at the door with his hat already on. He said his life wouldn’t be worth living if he didn’t wear it!

When I did a head count I found several of your little friends had gone missing, as I searched I heard a strange noise coming from the kitchen. I found that your nana and your great aunty Dot had helped themselves to an unopened bottle of wine, feeling somewhat refreshed they were singing a medley of World War two songs while attempting to wash up. I feared their voices would shatter my crystal. Your little friends, who up to that point had been unaccounted for, were sat on the floor soaking wet but having a wonderful time. Your nana and aunty dot were waving their soapy hands as they sang, slopping washing up bubbles all over the children, who in turn squealed in delight.

I found you playing happily under the dining table, you were eating the remains of some cocktail sausages that had been half squashed into the carpet. Who knew then, that sausages would play such a big part in your life. Being the cheeky boy that you are you squished a little sausage into my eye as I tried to coax you out from under the table, but you wouldn’t come and join the others so I crawled under and sat playing with you. You had found your safe place, away from everybody and you were quite happy playing by yourself, you pushed me gently away. You were already showing signs of autism but it would be a long time before I realised.

Sometime later when all the children had returned to their respectful mummies knees and the remaining elders of the family had dozed off, there was a disturbance outside. Loud gruff voices and manly giggles could only mean one thing, the dads were back, and in a party mood at last. They burst through the door, all black eyes and cauliflower ears each carrying enough booze to sink a ship.

Before I could stop them they all started singing Happy Birthday to you, very loudly. You, still under the table screamed and by the time I got to you your little hands were firmly clasped over your ears, your eyes wild with terror. The other children who had been snuggled on their mummy’s laps screamed in fright. Your senses were being overloaded but I didn’t know it then and I was confused as to why the song and the surrounding noises bothered you so much. I tried to make you join in by jiggling you up and down and then handing you to one of the dads who sang and danced around with you in his arms. All of the other children were by now delighted to join in, so there was lots of high pitch squealing and singing. Your nana and aunty Dot who had woken up when the dads arrived added their glass shattering voices to the din.

It was too much for you and you became inconsolable until eventually your dad took you off upstairs and out of the way of everything. Gradually the party people left and the house returned to normal. Or did it? To you John this was not your kind of normal, the noise, the crowds and the constant array of peoples faces so close to yours. Your first party had ended up being a nightmare for you, you had tried so hard but eventually the Happy Birthday Song had tipped you over the edge. I wonder if it was the tune or the words. We sang it again on your 2nd birthday but the flying birthday cake soon made us stop! In an attempt to shut us up you grabbed the board with the cake on and threw it. Your dad was right, he was a good catcher of rugby balls and of birthday cakes as it happens!

It took you until you were 18 before you could tolerate the Happy Birthday song, nowadays you are cool with it as long as you have one finger in your ear and a present under your arm.

These days John, just like the queen you have two birthdays. Your official one is always celebrated on 16th February wherever you are, either at home with us or at Nelsons Croft. The one thing for sure is that it is a birthday of a very different kind. This year as it falls on a Tuesday you are celebrating at Nelsons Croft. Your wonderful support staff always spoil you and you get a cake,presents and cards. More importantly you get exactly the kind of birthday you can cope with.There is always a party for your friends in the house to enjoy but you can just dip in and out as you see fit,usually only for second and third helpings of party food.

When you come home on Friday you will have another birthday celebration. You have already told me that you want your cake, balloons and presents on the Saturday and at three o’clock precisely. So all the special people in your life are invited to drop in and join in the bear hugs, cake and Christmas carols.

John, you have taught me many things about life in your 28 years, none more so than we are all different and as such should be respected for our differences not ridiculed or bullied. Through you I have learnt that what is pleasurable to one person may be painful to another and that we mustn’t try to make every one follow the same path or live by the same rules. You have shown me that with Autism there are no rules and when you have met one person with autism, you have done just that, met one person with autism. You are individual and unique, autism does not define who you are.

Johnelmo I love you more than life itself, I have had the most ridiculous fun with you over the past 28 years. I am looking forward to a special gooey cheek lick and a million bear hugs on Friday. Only 3 more sleeps!

All I Want For Christmas is…….A Silent Night.

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… 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……  

Mushrooms anyone?



An Apology followed by ‘Aye Aye Captain’

When I first started this blog it was my intention to post at least once a month, and for a couple of years that’s exactly what I did. However this year has seen my posts dwindle which is not ideal. John hasn’t suddenly stopped being funny and entertaining, he still loves to have fun and to laugh loudly and often. Life has simply got in the way and time has been quick to turn hours into days, days into weeks and weeks into months.

I am sorry for allowing this to happen, I am sure I have lost a few followers along the way who eventually gave up waiting for something, anything, relating to the inimitable, politically incorrect but oh so gorgeous Johnelmo.

I intend to put that right and will from now on try my very best to be a good little blogger and to get Johns stories out there and I hope, extracting a few titters from you along the way. For those of you who have stuck with it and waited patiently for a post, I hope this one makes up for it.

September the month of all things ‘S’ Boatish was heralded in by John waving a picture of the ‘S’ Boat in my face. It was actually only Friday the 21st of August. “Ember” shrieked John as I collected him and his box of tricks. “August” I replied whilst being slapped around the chops by the ‘S’ Boat. “It’s still August John, now stop waving that picture about there’s a good lad or you’ll have my eye out, go and find your iPad charger for me please.”

John continued to slap me with the picture; clearly I hadn’t noticed what it was he was showing me and this game of ‘Name the month’ wasn’t any fun at all! He tried again but this time with one arm firmly around my neck holding me in place as he pressed the picture of the ‘S’ Boat up against the end of my nose. Surely I could see what it was now. He put his mouth to my ear, “Ember mummy, Esssss Boat.”

Waggling my index finger around inside my ear I was able to remove most of the spit caused by John’s elongated Essss.  “Eiw! thanks for that John, now let go of me and we can talk about your trip on the ‘S’ Boat in a more civilised manner. It’s only twelve more sleeps away!”  “EMBER” bellowed John. “I KNOW….” I bellowed back “that you are going in September, but it’s still bloomin’ August!”

The rest of the weekend was a lost cause as far as sanity was concerned. John needed to spread the word far and wide that he was going on the ‘S’ Boat in twelve sleeps, holding seven fingers up, and that it would be in September. “How wonderful” exclaimed the little old lady in Sainsbury’s car park “Such an unusual name.” She nodded at me and then in the direction of John. “September” I enunciated the word slowly so that she would understand what John had been saying. “Oh!” she exclaimed  “That’s an even more unusual name than Ember!”  We see her regularly wandering around the little car park and I often wonder if she has been there for years, searching for the exit.

Next on John’s list was the awfully kind ladies in the ‘Smelly Shops.’ John marched into each shop, had a quick look round, chose a couple of Christmas cds, shouted “Ember” and ran out before I could pay. I can’t run anywhere these days, and even have a job trying to keep up with him just walking. I have to hang on to his arm which has its own drawbacks. I once asked John to help me and he tried to lift me off the ground, unsuccessfully. He put me down at an angle not conducive to remaining upright and so we both fell in a heap. We were wrestling around on the pavement outside that well known pub in the middle of the village but nobody batted an eye lid, there are regularly people doing some very strange things on the pavement outside!

Anyway I digress, by the time I had paid the last lady for John’s purchases he had disappeared. I could have cried. Just then a lady appeared who knows us from our regular Saturday sweep of the ‘Smelly Shops,’ she pointed at the cake shop two doors down. “You’re alright love, he’s in there making eyes at a lemon sponge”

Finally John wanted to tell the roly poly man in the station all about his forthcoming trip. He is a lovely chap, always smiling and John loves him. “Ember” said John with his face up against the glass. “Hamburger?” replied the roly poly man, perking up at the mention of food. John jumped up and down slapping his head “Yes burher, man, peas” He looked at me in amazement that the roly poly man was actually going to give him a burger. Up to now John had been unsuccessful in getting him to share anything from his pile of tempting treats which were all safely stacked up on a desk in the far corner. “Yahoo” he shouted as he pogoed around the station foyer shouting  “Chips, burher?”.  “Ships?” said the roly poly man into the microphone so he could be heard over the noise of John slapping and leaping about. “Sort of.” I butted in to try and clear up the confusion. “He was saying September, John wants you to know that in September he is going on his favourite boat” The roly poly man looked blank. “So does he have a burger on the boat then?” “Chips!” yelled John, the roly poly man clearly having failed to take his full order. “Oh he has burger and chips on board does he, that’s my boy, love burgers me you know. Hehehe fancy that, burger and chips eh John, don’t forget the tomato sauce now, no good without plenty of the red stuff. Hehehe, funny that, him and me liking burgers.”

Twelve sleeps later and John was on cloud nine and on the S’ Boat to Belfast. With him were two very capable support staff who love to see him happy and take great care of him. I can’t thank the boys enough.

All of the staff at Stenna Line also deserve a very special thank you, every year they go out of their way to make sure that John’s trip goes smoothly with the minimum of fuss and maximum fun. This year was no exception. Siobhan, the lady on the reception at the Twelve Quays Terminal in Birkenhead has a special place in her heart for John and she had arranged a surprise. John was to be captain for the 24 hours he would be on board. He and his support workers, who were almost as excited as John, were invited onto the bridge.  John was presented with a captain’s hat and a pair of binoculars, or knockers, as John calls them. (There is a post from a long time ago all about his knockers, you may want to read it!)

John was allowed on the bridge whenever he wanted for the entire 24 hr cruise, he sat in the huge swingy Captains chair and he kept a keen lookout for icebergs. He loved every single second and took over a thousand photos on his iPad. At the end of the trip they were all treated to a free full English breakfast with extra sausages. The Captain then held a special ceremony where Johnelmo was presented with a ‘Certificate of Competency’ in the capacity of Captain.  There are no words….


All’S Well That Ends Well

Gosh its been a while since I have posted on this blog. The summer is always hectic at the best of times but this year it’s whizzed by.
John’s summer begins with his holiday at the end of June and ends with his trip to Belfast and back on his beloved Stenna Line Ferry (or the ‘S’ boat as he calls it) in September, which incidentally is tomorrow!
So as you can well imagine John has been in a frenzy of anticipation. He has felt the need to answer every question with the words ‘S’ boat just incase I forget that his trip is imminent.
I picked him up as usual on Friday “Hiya Johnny boy” I said opening my arms to welcome him with a hug. He ran right past me and pointed to one of his many photo’s of the ‘S’ Boat that adorn the walls of his room at Nelsons Croft.
‘S’ Boat, Emba, yes, ok!’ he yelled stabbing the picture with his finger. “Johnelmo oh ‘S’ boat….Yeeeaaaaa”
“Yes yes Johnny boy, you are indeed going on the ‘S’ Boat in September and its not long now is it.” I replied, grinning at his attempts not to burst with excitement.
John answered by jumping on me and squeezing me so hard in a bear hug that my eyeballs were bulging. “Gerroffff John, I can’t breath” I gasped as he started po-go-ing me around his room. “‘S’ Boat ‘S’ Boat yesssss” he shrieked down my ear before licking my face with gusto. He always enjoys licking faces when he is overcome with glee.
It was going to be an interesting weekend ahead, I wondered if I would survive.

Regular readers will know that when John gets excited, which is often, he can’t focus on anything other than whatever it is that’s the cause of his excitement.
“Would you like some juice and cake John?” I asked once we were home and had unpacked his stuff.
“‘S’ Boat” he replied nodding vigorously and signing the word for boat to make absolutely certain I knew what one was.
Tea time was much the same. “How many slices of Ciabatta would you like John?”
“‘S’ Boat” came the reply, followed by “Two tape, two camma, iPad, chacha, debris oh S boat peas mum ok.”
He was letting me know that he needed to take his two cassette recorders, two camcorders, his iPad plus spare batteries and the relevant chargers with him on his trip. He would get very anxious if any of his important gadgets and toys failed to make it onto the boat. I promised that I would email Nelsons Croft to let them know. John then wanted me to let his granddad know too, plus the Hermes courier who just happened to turn up as John was making his list of people who should be informed! I couldn’t remember ordering anything on line so was a bit puzzled as to why he was standing there with a huge box.
“Man” shouted John lunging for the box. “‘S’ Boat!” he squealed as he tried to wrestle the box out of the man’s hands, but the man was not for letting go. He clearly had orders that he must guard the contents with his life. John on the other hand thinks every box is a present for him and so a tug of war ensued.
“Presen, S Boat, Johnelmo” yelled John grappling with the man who was now rendered blind because his woolly hat which he wears all year round had slipped down over his eyes. John was so delighted to be getting such a big present that he licked the Hermes mans cheek like a drooly puppy. The man was now faced with a dilemma; let go of the box with one hand to fix the hat but risk John winning the tug of war, or keep hold of the box and risk being deafened and quite possibly licked to death by John who was by now on another planet. The squeals and shrieks of laughter from John and the grunting from the Hermes man had started the curtains twitching in our quiet little cul de sac. Whatever is going on outside the mad house this time?

I stepped forward to help and grabbed the box, now there were three of us all pulling in different directions. “Let go John, there’s a good lad, it’s not a present for you” I pleaded as I was dragged off into the drive with John and the man both pulling at the same time. “Ouch, stop pulling me” I shouted at them both.
“Sorry love” said the man “Can’t see a bloody thing, call him off cant you!” I tried “John! let go of the parcel” but John was having none of it, there was a present inside and it had his name on it, of that he was certain. “‘S’ boat, Befass, Johnelmo Ember” he reminded us both, clearly worried that this new game might interfere with my memory of his forthcoming trip.
“He’s going to Belfast on the Stenna Line Ferry which is why he is a bit excited” I tried to explain. Because I couldn’t see the Hermes man’s eyes I couldn’t tell if he understood. “‘S’ Boat yessss” obliged John wanting to help me get the facts absolutely clear. The Hermes man’s mouth moved but no words came out, I could see rivulets of sweat escaping from under the hat and running down the sides of his face. I felt sorry for him, its not easy being on the receiving end of an excited Johnelmo. The three of us started going around in circles with all the pulling and pushing while John laughed maniacally.

“Mrs Baxter, could you please just get John to let go of the box so you can sign for it, then I can give it back to him and be on my way” pleaded the man in weary tones and he turned slowly. “Mrs Baxter!? I’m Mrs Ellsmoor!” I corrected him, starting to feel queasy, I cant cope with spinning even at slow speeds. “Johnelmo” nodded John, affirming his place in our little triad. The penny dropped on the Hermes man and myself almost instantaneously and I let go of the box. “John let go of the box now, please, its not our box its Mrs Baxters box” I told him and tried tickling him to get him to let go, but he was beyond listening. I could tell from his expression though that he was wondering who Mrs Baxter was and if she was going to jump out and grab the box. He kept his eyes peeled for her as he continued walking around in slow circles with the Hermes man. Whoever she was she wasn’t to be trusted.
“Sandfield Avenue?” asked the Hermes man, hopefully. “Nope, sorry this is Woodland Avenue, Sandfield is the next one along” I explained as the Hermes mans shoulders sagged almost as much as the box, all the grappling and wrestling had taken its toll. Mrs Baxter was not going to be a happy bunny when she saw the state of the packaging, if and when she eventually got her parcel.
“Ahaaa! ‘S’ Boat” shouted John to keep us all on point. “The hat, please sort my hat out Mrs Baxter, sorry Ellesmere” begged the man. “Ellsmoor!” I replied angrily, why cant people get it right. Its most irritating. I rolled the Hermes mans hat up which seemed to improve his mood. The box was still a problem though, as far as John was concerned it was a present, for him.
“Does he like pens?” asked the man…. ”
WTF was he thinking! surely he didn’t think John would be satisfied with a pen when the big present was clearly something really exciting like a model of an ‘S’ Boat!
” Pens!” I squeaked “You are going to have to come up with something better than that, pens!!”
The Hermes man looked offended, John was still looking for Mrs Baxter and I was looking for a way out of the situation.

I wish I could say it was an easy task, but it wasn’t. It involved lots of shouting…me. Lots of whimpering…the Hermes man…. and lots and lots of cake. You don’t need me to tell you who that was for!

As the Bard himself said “All’s Well That Ends Well”.

As a footnote I would like to dedicate this post to a very dear friend
Danny Greenstone, who died suddenly on Saturday.
Thank you for believing in me, for nagging me when I needed it and for making me realise what I am. You explained that what you and I do is much more important than just being authors, we are ‘Story Tellers’.
The world has just lost one of the very best. xx