Happy Holiday

We have recently returned from our 27th, yes you heard it right, our 27th holiday to Wales. We spent the first 23 of them in Abersoch and the last 4 in the hills above Caernarfon, within sight of ‘The Mast’ and a 15 minute drive from Bridge Oi Oi Ig and the Steam Trains.
John’s reaction is always a sight to behold, it’s as if he is seeing it all for the first time and it would melt the coldest of hearts.
This year I feared he would render us all unconscious as he leapt around the harbour like a salmon. Slapping his head, tapping mine, slapping his own again and finally Scoobie Doo’s, before loudly informing the gentle folk of Caernarfon that ‘Queer Mary’ was going to be in Liverpool the following weekend.
Oh yes, if we thought we may just possibly have a ‘Queen Mary’ free week, we were soooo wrong.

It was all my fault of course, if only I had waited until we were back home before telling him the news but no, I was so excited for him that I blurted it out when I picked him up the day before, and then instantly regretted it.
John is now so obsessed with Cunards finest Queen that the walls of his room at Nelsons croft are covered in photographs, posters and newspaper cuttings showing Mary and her sister ships, Elizabeth and Victoria in all their elegant glory. He also has a model of her proudly berthed on his radiator.
It reminded me of my own bedroom in the late 60’s early 70’s when the walls too were covered in so many photo’s and posters that you couldn’t see the wall paper underneath. The difference being that it was the not so elegant Noddy Holder and Slade that stared back at me from every angle. My dad would walk past my room shaking his head and claiming that Noddy needed a hair cut and a few years in the army would soon sort the lot of them out. He couldn’t bear to look at the tv when Marc Bolan and T.Rex were on Top of the Pops. His tight velvet trousers and the glittery stars on his cheeks were just too much. Marc Bolan’s that is, not my dad’s.

Anyway I digress…..back to me letting the Queen out of the bag.

When I arrived at Nelsons Croft to pick up John I imagined I would be packing several boxes containing most of his toys and gadgets. How wrong could I be! There was only one box containing 2 talky alphabet tablety type of things, his clock, a mobile, Tinky Winky, Scoobie Doo and several hundred photo’s of his beloved ship. That’s when I let it slip that the she would be in Liverpool the following weekend, John immediately wanted to change the plans and stay home so he could be sure of not missing it. After 364 sleeps, all eagerly and repeatedly counted down on a daily basis, he didn’t want to go. Me and my big mouth.
It took a while to convince him that we weren’t moving to Caernarfon for ever, that he would definitely get to see Queen Mary next week and no she wouldn’t be going through the Bridge Oi Oi Ig even if I did manage to phone ‘The Man’. I agreed that we would come home on the Thursday thus ensuring that John had 3 days to prepare himself for the big event.

Caernarfon was now playing catch up to the much more exciting prospect of John getting to flirt with his Queen for an entire day.

The following morning after carefully arranging all of the photos, bits of newspaper cuttings and the 12″ model of Mary on the dashboard, we set off on our jollies. I needn’t have worried, apart from Tinky Winky who kept asking for Po, at least I hoped that was what he was saying….and Scoobie Doo continually mentioning that he could smell cheese burgers, the journey was pleasant and without any hitches.
The Queen Mary sailed up and down the dash board all the way to Caernarfon, tooting loudly and occasionally falling off into the foot well, much to Johns delight.

As I mentioned John went completely bonkers once we arrived and as always happens after several minutes of yelping, slapping, leaping and crotch grabbing he cleared the harbour of tourists, seagulls and anyone else who might have been enjoying the sunshine.


Being a good lad John shared his news with whoever was still around. Running over to a man and his son who were quietly catching crabs off the harbour wall he startled them by yelling ‘Yeehaaaa! Queer Mary twoo’
They both jumped, well you would! The crab took advantage of the situation by wriggling of the hook, I am sure I heard it squeak ‘Cheers Johnny boy’ waving its pincers at him as it plopped back into the water. ‘Cab’ shouted John pointing to the empty hook and roaring with laughter ‘Gone’ he added unnecessarily nodding his head. I apologised and tempted him away with a piece of cake before things took a turn for the worse.

We sat and ate our picnic while John and Scoobie fought over a cheese sandwich, by the look on Scoobies face, John won.


Bridge Oi Oi Ig swung several times and the pleasure boat ‘The Queen of the Sea’ chugged in and out of the harbour all afternoon, ensuring that the start to John’s holiday was about as perfect as it could be. I am not sure the locals shared our view, even the gargoyles on the famous castle walls had their fingers in their ears.

The rest of the week was taken up with daily trips on the ‘Queer oh Thea’ as John pronounces it. He took his camcorder, iPad and Tinky Winky with him on every trip.  As the boat sailed out of the harbour and off into the Straites, John carefully filmed the bridge swinging open while his dad, looking very uncomfortable, held on to Tinky Winky, who could clearly be heard saying ‘Tinky Winky wants Po’. I cant really describe the expression on his face!



Every afternoon was spent in and around the little Highland railway station waiting for trains to puff in and out. Once everyone was off the train John would jump on and film the air vents above the windows in the carriages. No idea what he finds fascinating about them but he shot about 4 hours of footage.
Over the years the station staff have got to know and love John and he loves them back. ‘Johnelmo oh Queer Mary twoooo sayyay’ he announced as he walked into the little building and up to the lovely lady behind the counter. She looked at me for help. I translated….’He is saying that he, John Ellsmoor, is going on the Queen Mary 2 on Saturday’
Immediately John started jumping up and down thinking I was saying he really was going on the Queen Mary. I realised my mistake ‘No! John you are not going on it, just going to see it, now stop jumping for a minute the display shelves are shaking’
The handsome man who spends a lot of time in the office came out to see if Caernarfon was experiencing an earth quake. ‘Aw Johnny boy isn’t it!’ he laughed, managing to catch two books and a plastic Thomas the Tank Engine which had been bounced off their shelf.
‘Queer Mary Libubub’ said John. I explained to the handsome man that she was coming into Liverpool next Saturday.
He laughed ‘I knew a Mary once you know, oh yessss, a proper girl she was, you know, magnificent.’ he winked at me to get his point across. The handsome man has had many conquests and he loves to tell you all about them. He held his hands wide apart indicating her figure, saying ‘She was built like a sea goddess herself you know, oh yessss, totally magnificent. I had many a good voyage with that one I can tell you.’
Fortunately before he could start to reveal more about his voyage around Mary, the lovely lady behind the counter spared all our blushes by flicking the switch that turned on the big flat screen which was on the far wall and played DVD’s of the various Highland railway journeys. John immediately yelped, bounced over and stood transfixed at the screen. Having been disturbed by the earthquake, the little instore coffee machine started to pour forth water, so the handsome man had to dash over to turn it off. The lovely lady looked at me knowingly, she was clearly well used to the handsome man and his stories. He disappeared back into the office probably to relive his time with magnificent Mary.

The weather was very kind to us all week and John loved every minute, inspite of needing constant reassurance that he would be seeing his beloved Queen Mary on the Saturday. Its impossible not to be impressed with the cottage and surrounding countryside. Its a peaceful haven of wildflower meadows and the wildlife that depends on them.

I felt our 27th holiday was more of a success, this due mainly to the fact that we only lost John once. Last year we, or I should say I, lost him 3 times!
One evening before tea he managed to sneak away while I was chatting to the owner, he is great fun and always has lots of stories about people who have stayed in the cottage over the years. John has the freedom to wander around safely without being in danger from a road.
When I called him in for tea on this particular day I didn’t think much of it when he didn’t come running in to ask how many sleeps it was until Saturday or for a piece of pre tea cake.
I called again, nothing. His dad told me to leave it as he would be watching something on his dvd player and would be down in his own good time. Five minutes passed by and by then I knew with certainty that he had been kidnapped. Abducted by aliens even, who knows! John was definitely no longer in Snowdonia and most probably not even in Wales. All reason goes out of the window with me as I panic at the thought of my vulnerable son being lost. His dad pointed out that Alien abduction would be more likely than a kidnapping, John being 6ft tall, weighing 17.5 stone and bellowing like a bull would scare the kidnappers to death and they would almost certainly run off. He had a point.
I calmed down and we split up to look for him. We searched the cottage, the cars, the garden, the surrounding fields and the river bank but to no avail. A vein started to throb on John’s dads temple so I knew he was a bit worried. He started shouting ‘Sausages’ at the top of his voice which set a pack of dogs barking and howling in a nearby farm. Again ‘Sausages, JOHN c’mon there’s a good boy’ I looked at him ‘Will you stop shouting sausages, the dogs are going to break out and come after us’ He looked at me ‘You think of something then’. I thought for a minute… ‘Sausages, Sausages JOHN’ I yelled ‘c’mon its tea time.’ By the sound of it I think the farm dogs started eating eachother.

As we stood in the drive we heard a faint sound, a weird nonsensical, indescribable voice drifting on the warm evening breeze. We strained to hear what it was saying and where it was coming from. We followed it across the drive, through the sheep paddock…there it was again, only more clearly now….’I smell Cheeseburgers!’
John and Scoobie were sat in the large chicken coop having a wail of a time playing hide and seek. The chickens were long gone having made a tasty meal for Mr fox. John had both hands over his mouth to stifle a snort. We all started laughing, goodness knows how long he had been hiding waiting to be found. He looked at me, guffawed loudly and said ‘Sausages mummy?’


There’s Nowt So Queer As Folk And Molluscs

It’s been an exciting and at times strange couple of months in John’s world . Firstly there have been weeks, nay months of eager anticipation for the visit of the Three Queens to Liverpool. Those of you who know John will already have discovered that he can’t pronounce words like ‘Green’ or ‘Queen’.   The letter G sounds like a Q  and any word which ends in ‘N’ ……he substitutes it for the letter R….. therefore it all sounds very un PC.

If you haven’t already, and before you report us both for being homophobic please take a quick look at the ‘About’ section in the menu and it will explain it all. Autism is extremely un PC.  John says what he sees and tells it like it is, in the unmistakable language of ‘Johnelmo Speak’

John has been madly in love with The Queer Mary 2 for the past year and has looked forward to seeing her and her two sisters with ever mounting excitement. He has been regularly getting me in loving headlocks on Saturday mornings, presumably incase I tried to make a run for it, and dragging me to the end of the road, over the little queer and onto the prom. Yes you have guessed it, there is a little ‘Green’ at the end of the road separating the houses from the promenade.

John would then stand with my head under his armpit, pointing theatrically towards the Irish Sea and shouting ‘Queer Mary. Libubub. Maaaaay. Yes! OK!’  Followed by a well choreographed bout of head and thigh slapping whilst still keeping a firm grip on me. I tried to balance John’s mispronunciation so that every time he shouted ‘Queer’ I yelled ‘Queen’ thereby letting the good folk of Meols know that Queer Queen Mary would be visiting Liverpool in May

He did mention Elizabeth and Victoria too but honestly the two names sounded nothing like what they should sound like and I think passers by thought he was yodelling whilst trying to strangle his poor mother. I hoped my waving and smiling reassured them.

Finally the great weekend arrived and John was up at the crack of door, he can’t pronounce dawn either. He wanted to get an early start and the best view. He went with his favourite support workers and had the most wonderful time. He shot hours of camcorder footage and his voice can clearly be heard above all the deafening music, thousands of chattering people and the tooting of ships horns, as he jumped up and down waving and calling to his beloved Mary, and the other two which he can’t pronounce.

He is now looking forward to them all popping back to see him next year…….not sure how we are going to explain that one to him.

A couple of weeks after the Three Queens Visit, John was upstairs looking at photos on the computer and laughing helplessly. That’s nothing new as he is nearly always laughing so I didn’t pay much attention, although it did go on for a while. There was lots running in and out of his room and slamming of doors accompanied by John squealing and snorting with glee.  During one particular raucous session he shouted me, ‘Up mummy up peas, now’.  He was bouncing and spinning around the computer room on the wheelie chair and pointing to the screen and the keyboard. I waited for him to explain what he wanted me to do. Usually he either wants a song on YouTube or words putting into the search engine. He does really well to communicate and is always very patient as I try ever so hard to guess what some of his more obscure requests are. This was a particularly difficult word to fathom. It began with a T, possibly followed by a W or was it a U? a couple of dodgy ones in the middle but it definitely ended in an A or a Y or did it?

John tried many times, gurning and smacking his lips trying to pronounce the word. It tickled him as I tried in vain to guess what he wanted and he guffawed loudly at my pathetic attempts. ‘Is it Train John?’ He shook his head, hand over his mouth to stifle a snort. Maybe it didn’t start with a T, ‘Does it start with T John?’  I asked him, laughing with him at this lovely exchange. He nodded, bounced and clapped. ‘No Thee’ he said unhelpfully. ‘Oh right, so can you just say the first letter of the word you want to tell me’ I asked hopefully. ‘Thee’ said John nodding furiously. ‘ But you just said it isn’t T, make your mind up’  I sneaked a sly kiss onto his cheek while he thought about it. ‘Yes Thee no’ he replied licking my cheek in return.

At times like this it’s better to see if he can find a picture in one of his books or in his pile of photographs which will help us work out what he wants me to search google for. So I asked him if there was anything he could find that would help me understand. He thought about it, roared laughing, nodded and took me into his bedroom. He sat on his bed with his hands over his eyes rocking back and forth, the way he does when he is too excited to look at something. After a few more moments of hysteria he opened his eyes and his bedside draw where he keeps his underwear and rummaged around in the multicoloured selection of underpants. He looked puzzled, I was equally as puzzled as he has never asked me to Google underpants before, and the word he was trying to say wasn’t anything like ‘Underpants’.  Having said that, regular readers will know that the rule doesn’t always apply. Take ‘Oi Oi Ig’  for instance…..John speak for ‘Caernarfon’ where incidentally we are going very soon for his annual holiday and which John calls…. Abersoch…..see it makes no sense at all does it.

Anyway I digress, back to rummaging around in his underwear, so to speak. The only other items he keeps in his underwear drawer are his glasses , he pops them in there when he is in bed and ready to sleep, but he had them on so it couldn’t be them. Finally after taking all the underpants out he found what he was looking for. Upside down in the palm of his hand was a snail. A large garden snail, slightly traumatised but very much alive. John took me and the snail into the computer room, pointed to the Google logo and said ‘Pickies’. Slightly puzzled and keeping one eye on John incase he hid it somewhere else, I obliged by typing in Snail and selecting  ‘Images’. Immediately John and his new pet were joined on screen by several hundred of its relatives.

I had to bribe John with an extra large slice of cake in return for him handing the snail over. It’s all still a complete mystery, not only where did he get it from in the first place but how long had it been in his undies drawer. Eiw!

Never Say Never

I haven’t had time to post for a while so here is what John was up to this time last year! I hope you enjoy it.

Close Encounters of the Autistic Kind

I am not sure if John will ever forgive me for not getting him a goat. He didn’t speak to me when he came home to find he was goatless in spite of his heartfelt requests. He slouched about moaning, groaning and shooting me sideways glances under his lashes, absolutely refusing to look me in the eye.
‘No goat, no goat’ he chanted all weekend, even refusing to have a look inside the shed. He hid his eyes every time he walked past it, it was just too painful a reminder of what might have been had I not been such a selfish, thoughtless mum.
My report that weekend clearly stated ‘Could do better’.

In my defence I never once said it was even a remote possibility. I was however in the minority. After my last blog post everyone who knows John either phoned, text, emailed or facebooked me to…

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Easter, Christmas And Another Brush With The Law.

The Easter weekend seemed to pose a bit of a problem for John, in that he decided it should be Christmas. “Chrimmas yes ok!” shouted John as I chased him around Nelson’s Croft trying to get him to help me pack his box of tricks to bring home. “No it’s Easter John, you know, chocolate eggs” I puffed as he gave me the slip yet again,  diving into the conservatory and chuckling away to himself.  He was having none of it “Chrimmas prehen, twee,” he yelled “Dah”. I knew it was not going to make a blind bit of difference to John but I corrected him anyway. “No Christmas tree, no star, no presents, just Easter eggs John. Sorry but that’s the way it is.”  He appeared in his doorway eyeing me suspiciously in the way kids do when they think you are telling porky pies. Having decided I was a pathological liar he poked his tongue out, slapped his head and declared finally that it was indeed “Chrimmas”.

And so it was that John spent the whole weekend wondering why the Christmas tree wasn’t up and reminding me by pointing to the corner of the lounge where it should be. “Chrimmas twee now” he demanded every fifteen minutes.  Autistic people can repeat the same phrase for hours on end if the message they are trying to get across is important to them. Sometimes they repeat it just because they like how the words sound and how it feels to say it. I find it very difficult as a parent to cope with the constant repetition and whilst I understand completely that he has to do it, it takes a supreme effort not scream. I gave up saying it wasn’t Christmas and therefore I would not be putting up the tree, after I developed a nervous twitch in my right eye due to the stress. John continued to remind me and I spent all of Saturday inadvertently winking at strangers.

Many of you will know that one of John’s favourite activities is watching the “Bridge Up” as he calls it. It is a road bridge over the Alfred lock in Birkenhead and when ships come in from the Mersey it gets raised to let them through and lowered once they are safely in the lock.  John’s excitement goes off the scale when this happens, I am sure his whoops and hollers can be heard for miles.  There is so much head slapping and crotch grabbing that I fear he will end up in A&E. Every Sunday I phone ‘The Man’ in the hope of some ‘Bridge Up’ activity for John before he goes back to Nelsons Croft. It’s his dad who usually takes him back and therefore gets to enjoy the full spectacle. John also gets to go to ‘Bridge Up’ during the week with his support staff from Nelsons and they love it just as much. There is nothing in the world, for me at least, than to see and hear John having a good time.

So on Sunday morning we had the obligatory but somewhat disappointing egg hunt. It was  disappointing because John was clearly wanting Christmas presents, crackers, poppers and a roast turkey. The look on John’s face made me feel like The Grinch.  Fortunately when I later phoned ‘The Man’ he confirmed that the bridge would be going up twice and suggested we get there for about 12.00 noon when the first ship should be arriving in the basin. This took John’s attention away from his very lean Christmas and he was fit to burst with excitement as we packed up the car and headed for the Bridge at 11.00 o’clock. John likes to be early so as to make sure he doesn’t miss a thing.

We parked in a little spot by the gates to the lock and wandered over to wait for as long as it took, 3 hours to be exact! To pass the time we sat and had a picnic, as you do, on a piece of waste land full of empty muscle shells and stinking of fish. I played eye spy with myself trying to identify various bits of debris floating in the lock. I think I saw a dolphin and a dead body but none of the passers by seemed to notice so maybe I was mistaken. That’s when I spotted the police car, crawling slowly passed and looking at John and I. He did this several times and then put his blue lights on and swerved to a halt behind my car. Ok so I was probably illegally parked but that didn’t call for blue lights surely. I told John I had to go to see the policeman but he wasn’t listening, he was jumping up and down yelling “Yeee Haaaaa” as the first boat entered into the lock.  As I got to the police car I noticed another  car had parked next to mine and the policeman was having stern words with the driver as he ‘helped’ him out of his vehicle. The man was waving his left arm about in protest as the Policeman had a firm grip on his right one. I don’t know why I did this, maybe it was the stress of the past three days of Christmas, but I poked the police man in the back to attract his attention. He swung round, clearly not amused at me butting in. “Erm hi” I squeaked “Should I not have parked here? it’s just that…” “You are fine” barked the policeman now struggling to keep a grip on the man. “I have his disabled badge if you want me to pop it in the window” I babbled on pointing at John and failing to read the policemans body language, which was clearly saying  “FFS!” I gave him my best smile, reserved for moments such as these and was about to let him know how grateful I was when he interrupted me through gritted teeth “You are fine Madame, really. Enjoy your picnic, now if you don’t mind….” He inclined his head in the direction of the man in his grasp and then nodded in the direction of John. “Oh yes, sorry officer, yes, I do apologise….” On and on I babbled as I went back to John who was waving a cheese sandwich at the men steering the big ship into place.

As we waited for the second ship to arrive in the lock we sang a song. John had chosen Jingle Bells and he jumped up and down as we sang it about 53 times, there’s that law of repetition again. The police man had presumably won the arm wrestling competition with the man and had let him go. He was now moving his police car through the gates nearer to where we were. I waved to him as John and I sang……again…why did I do that!? He got out and stood by his car, talking to his chest. It always looks like that from a distance. John suddenly stopped singing and jumping and dashed off towards the policeman. I followed behind trying to look windswept and interesting and failed miserably. I can’t stand for long and as we had been at the lock for a while my legs were doing strange things.  I tried to disguise my wobbly gait as best I could but sadly I looked like Quasimodo as I rolled and staggard towards the by now visibly alarmed police officer.

I think it’s best to say at this point that John and I were at crossed purposes. I thought he was wanting to look at the police car because he loves them. John however needed to go to the toilet,  although in my defence he didn’t say so or even sign to say he wanted to go. As there aren’t any public loos around, and as he and his dad regularly stand in this area for hours on end, he was making for some bushes which were situated behind the police car.  He obviously knew he would be able to relieve himself without being visible to passers by. Oh if only I had known.

I told John to stand by the police car next to the policeman and I would take his photo. John pointed to what I thought was the car but I now realise was the bushes, so I said “Yes Just stand by the car John”.  Turning to the policeman Quasimodo said “You don’t mind if he has a photo taken with you do you?” flashing him my best Quasi smile. “John, come on and stand here” I pointed to the policeman and the car. John pointed at the bushes. I think the policeman smiled although I can’t be certain, John who is a good lad and tries his best to do as he is told jiggled about next to him gurning and pointing. “Keep still John, say cheese there’s a good boy” I commanded.

John desperate to do as I said, did his very best to smile, the policeman could have tried harder in my opinion but I took the photo anyway. John who by now must have been bursting, in a lot of discomfort and realising the bushes were too far away, turned around and weed all over the police cars wheel. You couldn’t make it up.

A Serious Issue.

When I decided to write this blog it was first and foremost a way of reaching out to families who may be struggling one way or another with Autism. I wanted them to realise that they were not alone and that with the right support network around them, living alongside autism can be fun as well as challenging. Secondly I wanted to tell as many people as possible about my funny, bright, gorgeous boy who makes my heart burst with pride and leaves me gasping for breath with his bear hugs.

I have had some wonderful comments and received countless emails from followers around the globe all saying how much they enjoy reading about John and that they can relate completely to the situations we find ourselves in. One lady from Australia emailed to say, and I kid you not, that John is very big down under!

I have been both delighted and moved in equal measure by how it’s all turned out. None more so than when a few weeks ago a young mum called Jayne contacted me, she reads the blog and regularly leaves comments about her children, both are autistic and both with very different needs. They sound wonderful. She thanked me for making autism sound fun even when we both know it can be anything but. I admit that I had a bit of a wobble at that as I thought I might have been coming across as a bit smug, all ‘Oooh! Look at me, I am having such a great time with John and not a worry in the world’ kind of thing.

I questioned myself about my writing style, was I being true to myself and to my reasons for writing the blog. When I voiced my concerns she reassured me that I had completely got the wrong end of the stick and that I was definitely not coming across as smug. Such a relief, thank you Jayne for calming my inner doubts.

Thanks also to Jayne, who is rapidly becoming my new BFF, I have recently had the pleasure of meeting with her family plus two others, Gill’s and Sue’s. All three families are going through the same struggles with their sons and daughters that we went through with John at the same age.

Two of the families are currently experiencing problems with Social Services as their children are approaching 18 and their futures are being discussed although nothing appropriate to their children’s needs is being offered. The other family is within a year of their son leaving school with still no concrete evidence that they will be granted the funding for their child to be placed with Wirral Autistic Society as the local authority are quibbling about funding issues. They are all stressed out, exhausted and demoralised. They also feel very much alone in their individual struggles.

Jayne and Gills families have been told by social Services that yet again WAS will not be considered as a placement for their children inspite of their numerous requests. Instead they have been shown around day centres which are totally inadequate for their children, in some cases even at the centres own admission. It would seem that once again children with autism are being placed in completely the wrong environment which can only lead to problems in the future. As far as respite goes they are being given no choice at all except for a very small unit belonging to adult services which presumably won’t cost the local authority anything. Social Services claim it will  be able to fully meet their children’s needs but in all probability it will fail at the first hurdle.

As parents they are all very switched on in terms of the level of support their children require. I am amazed at how they have all coped and are still smiling even if it is through gritted teeth at times. I asked their permission to include them in this post; it’s a bit different from my usual ones. I wanted to talk about their story alongside our own struggle, to highlight the importance of needing the right support for the future of your child if he or she is to have any chance of a happy and fulfilled life.

Even more worrying is that it has been 12 years since we had to fight for John’s right to be referred to WAS which we believed to be the placement best suited to him, and yet here are three families all these years later that are going through exactly the same stresses and anxieties that we did. The reasons are all still the same, lack of funding therefore lack of provision.

When your child is diagnosed with autism you start on a journey that seems to be all uphill. It would be wrong to say that there are not good times, there are and there is lots of laughter along the way too but if you ask a parent of an autistic child what their lives are like I doubt the word ‘Fun’ is first on the list.

Every time you think you are doing ok something comes along to test you even more, maybe behaviour problems or additional health needs. Something’s not right at school or maybe you can’t even get your child to go to school. We had 2 years of struggles to get John to school and there is nothing more depressing than starting your day with a high anxiety incident which can last for an hour or sometimes even longer. Once he was on the bus I would be too exhausted and wrung out to do anything except cry. Of course you don’t really tell anyone about your troubles you just get on with it. John would then be upset and struggle to cope for the rest of the day. He started taking his frustrations out on me and would regularly attack me because it was his only way of communicating how dreadfully difficult his life was becoming and he wanted me to make it all right for him again. I wish it had been that easy.

Maybe you can’t get your child to go out of the house, or if you can then they scream all the time they are out because their senses are being assaulted by the light, the dark, the noise, the silence, the sunshine or the rain. Their need for routine can be of paramount importance to them and if something unpredictable or unplanned occurs it can leave them unable to cope, resulting in a meltdown. There will be problems with sleep, or lack of it. Some children can stay up for almost 24 hrs without any apparent adverse effects; I know this because John didn’t sleep through the night for years. Anything and everything has the potential to cause your child fear and anxiety, you are constantly running on adrenalin which is draining in the extreme. Is there any wonder that you need respite but when you ask for it you can’t always get access to it, usually when you needed it most. We were lucky when John was with children’s services as the respite centre staff were very aware of how tough life with John was becoming and they always phoned me if there was a free bed to see if I needed it for the weekend. We didn’t always take it but on occasions it saved our sanity.

You take all the challenges and heartache on your shoulders because there is no alternative. Week after week, month after month, year after year your hill gets higher with few plateaus while your burden feels heavier. No one who hasn’t experienced it can ever imagine how hard life can be. You are weak, exhausted and just when you think it can’t get any worse you are faced with ‘The Future’ Something you have probably been trying to avoid thinking about for years. Your child might have become even more challenging, they will probably be bigger and stronger than you and yet you love them more than ever because they are at their most vulnerable. Their lives and therefore your lives are about to change immeasurably.

This is where Jayne’s and the other families are right now, at the top of the hill and scared to look down, hoping upon hope that their gorgeous boys and girls will be supported as adults in an autism specific environment. Is that too much to ask when there is an award winning  centre right on their doorstep, the only one in the North West?

It hasn’t always been ‘Fun’ for John or our family, there have been plenty of tears and gnashing of teeth and I have touched on some of the difficulties faced in earlier posts. I am going to tell you a bit about the struggle John’s dad and I had when at 15yrs old John was being prepared for the transition from children’s services to adult services which would take place when he reached 16. If everything went to plan your he would remain at school, as an adult until he was 19.

At that time children’s services was nestled in its jolly, primary coloured world being fed by a nice healthy budget. The schools were bright and full of laughter and still are, they were places where the staff excelled at supporting and developing our children with love and commitment. They managed to support the families too, always watchful for signs of a stressed out mum or dad. There were holiday clubs and play groups to entertain the children during school holidays.

The respite centre was fabulous, all beautifully painted and stuffed with toys and games to suit every child. There was a sensory garden, a computer and a huge soft play area. The bedrooms were all themed and a wonderful extension was built for the more challenging children who struggled to make sense of their world. A place where they could chill out if they needed to be alone.

Adult services on the other hand lurked in a murky world of drabness and peeling décor. There was far less funding available, way too many clients and too few staff. What staff they did have were buckling under mounting pressure to try to deliver what they recognised was an inadequate service to desperate and vulnerable clients and their families. Pressure was mounting and moral was rock bottom.

I was horrified at the differences between the two services and what they had to offer. You weren’t even allocated a named social worker once your child reached 16, you were just dealt with by whoever was on duty, and therefore no one really knew who you were or what your child’s needs were. In fact you were very lucky if someone even answered the phone.

The respite centre was a shock to us and I was in tears as we walked around. It was huge, noisy and the corridors were grubby. The rooms were ok but very basic. I guess it is very difficult to maintain the look of a building with very little money. In truth it was only the dedication of the staff and our very real need for a break from the stresses of everyday life that made it seem acceptable. I cried every time John went, mostly out of guilt for needing the time away from him in order to recuperate and regain some energy.

Once he became 16 he immediately had to use the adult respite centre with people years older than himself. John was never really happy there as it was too noisy and echo-ey but the staff were wonderful with him and managed to indulge him with promises of being allowed a go on the hoist which was used to lift people in and out of the bath. John loved this ‘oist’ game and it was on the top of his Christmas list that year.

The transition team from Connexions visited the school every 12 months from when John was 14 to advise us what was available for him once he left school at 19. I had earmarked Wirral Autistic Society as the place best suited to Johns needs a couple of years previous and I was adamant that was where he should go. The girl from Connexions dismissed it immediately and said it was not possible as there was a huge waiting list and that WAS operated a locked door policy. When I asked her how many children had gone on to WAS she said she didn’t know of any. I asked her where she got her information from and she said it was common knowledge but when pressed couldn’t be certain of names, more that it had always just been that way. I wasn’t convinced of any of it and refused to listen to her alternatives. We didn’t really see eye to eye over the next few years, I just repeated myself and she continued to tell me I was wasting my time.

How could finding the best placement for my son be a waste of time?

Our social worker from child services was wonderful and supported us in every way through the transitional period except whenever Wirral Autistic Society’s name cropped up, which was often. I was determined to keep that ball in the air for as long as I needed to. As Margaret Thatcher famously once said ‘The ladys not for turning’ and neither was I on this one. (I never thought I would hear myself quoting Lady T!)

Both our social worker and the transition officer from adult services (who was a social worker under a different name), admitted that they had never ever placed anyone with WAS because it had a locked door policy, whatever that meant and anyway there was an 8 year waiting list. Exactly the same information I had been given by the Connexions team. Whoever came up with that excuse must have been clutching at straws, but scarily it had worked and adults with autism were being redirected to day centres if college was deemed inappropriate.

Day centres cater for a wide range of needs and therefore in the main will not be appropriate for people with Autism. They are staffed by wonderful, dedicated people who do a great job, but the two we were shown around were clearly not able to offer John the level of support he needed if he was to progress and develop.

There was little scope for him to be supported in discovering new interests and activities and the noise level would have caused his anxieties to overwhelm him. I was more determined than ever that Wirral Autistic Society was the only place capable of meeting all of John’s needs and with the expertise to support him in all areas of his life. We were only looking for day services for John at this point but still Social Services or the SS as I like to call them were not for budging.

We were involved in a kind of Mexican standoff, we were refusing to accept the day centres, we didn’t believe that there could be an 8 year waiting list for WAS, it didn’t even make sense for goodness sake, and I felt that the transition officer, who I liked very much, could see that our reasoning made sense. I caught him nodding a couple of times when I was talking; had I spied a chink in his armour? On the other hand, the social worker from Child services, who I also liked very much, was getting increasingly nervous as she had never before dealt with anyone who politely but flatly refused to take what was on offer.  After many weeks and months of bouncing back and forth with suggestions by them……all declined by us……requests by us for a meeting with WAS…..all declined by them, I said we would dispense with their assistance and speak to the people at WAS ourselves.

This baffled the social worker who had been conditioned for years by the SS into thinking WAS really did have a locked door, asked how I would go about getting in!! It made me laugh out loud, John’s dad laughed out loud too and eventually the transition officer joined in. Only our poor beleaguered social worker couldn’t see the funny side. I then tried to explain that I would just knock on the bloody door and there couldn’t possibly be a waiting list of 8 years, it wouldn’t work and was a ludicrous suggestion, but she just kept saying “But it is that long, it really is”

Eventually I struck a deal with them both, I didn’t really care whether they agreed to it or not but I wanted them to see for themselves that the SS had been scaremongering for years. My deal was….  If the social worker would ring WAS to arrange the meeting,  and the transition officer would agree to come along too,  and if after talking to the director of day services and having a good look for themselves at what was on offer in terms of the facilities, the support and activities, IF and it was a big IF due to their brainwashing by the SS, if they still thought it wasn’t the right placement for John then we would part as friends, I would take on the SS by myself with John’s dad as rear gunner and they would be rid of me forever. How could they refuse?

They agreed! They also said that I was cheeky and a nightmare. I thanked them for the compliments and the rest they say is history.

I am happy to say that a few of John’s friends from school also accessed the day services and I like to think that our social worker had put the word around about the excellent service being offered by Wirral Autistic Society.

They still provide an excellent service, John is who he is today because of the care and support he receives by the staff at WAS.

Besides knocking a chicken unconscious in his first week, he also learned how to drive a tractor and he can operate the trailer to tip it up too, his squeals of delight can be heard around the entire site. He mows all the lawns, knows all there is to know about the mowers and absolutely loves it. He uses the leaf blower which he finds hilarious and adores all of the staff who support him. He looks after pigs, goats, chickens, geese and goodness knows what else. He uses the gym and particularly likes the running machine. He gets his support worker on it and increases the speed when he thinks they are not looking.

He is much more independent too although he still needs one to one support and as you know he even gets to go to Belfast and back on the ‘S’ boat. He has also been a resident for the past 7 years; he loves his life at ‘Nelsons Croft’ and is happier than he has ever been.

John would not have accomplished all he has had he not been placed with WAS. Life is indeed very good for John and our family, we look forward rather than down and the only hill we encounter is the one with the mast on in Wales that John is completely potty about.

I will do everything I can to support Jayne’s, Gill’s and Sue’s family through what is proving to be yet another exhausting battle as they fight hard to secure the very best outcome for their children, just as we did for John. I have feeling that Jayne, Gill and Sue are all as cheeky and as much of a nightmare as I was!

Finally, I think I can now say that even if I never write another word, Jayne has proved to me that the blog has done what I hoped it would, by proving that she is not alone in her struggles.

It’s A Fair Cop

I recently read a really interesting article by Jo Worgan an editor of the online magazine ‘autismdailynewscast’, regarding law enforcement and young people on the autistic spectrum. It is entitled ‘I Am Frightened’  Jo’s article is excellent and definitely worth reading. Young people who have autism are vulnerable and can inadvertently find themselves in all sorts of trouble at the mercy of police men and women with little or no experience of autism. Please do have a  read of Jo’s article by following the link below.


I am happy to report that personally I have always found the police on the Wirral to be excellent in terms of their understanding of autism and the way in which they handle sensitive situations. By way of an example I would like to share with you some stories concerning you know who and the ‘Peez’ as he calls them.

The first time John and I made the aquaintence of our local ‘Peez force’ was when John made a decision that he didn’t like seat belts and refused to keep his fastened. He was about 12 at the time. We would start out on our journey all safely seatbelted up and after a few minutes he would unfasten it and bounce up and down giggling helplessly. He liked the clunk click sound that the belt made when it clicked in place but he didn’t like to feel the belt restricting his movement. This is not uncommon among some autistic children but it made driving anywhere very difficult and the journey to the shops five minutes away, could take an hour.

I would stop the car, tell John he had to wear his seat belt, click it back in, get deafened by his squeals of laughter at the noise and then restart the car. 100 yards later he would take it off again and we would repeat the whole thing over and over until eventually I would have a sense of humour failure and John’s frustration would boil over.

“Seat belt ON John, please. Mummy can’t drive if you don’t wear it.” I would fight to get it back over his big tummy while John wriggled and hooted, he loved the ‘Seatbelt Off’ game.

“Oh” John would reply unfastening it. “ON not OFF” I would reply sternly, trying to convey the serious nature of my demand. “OH” he would yell back clapping his hands with glee. Just for the record in ‘John speak’ ‘Oh’ means both on and off, John pronounces both words the same which at times is very confusing but when playing the dreaded seatbelt game I knew for sure that ‘Oh’ very definitely meant off.

We would kangaroo every 100 yards with me shouting ‘On’, John shouting ‘Oh’ and the poor car spluttering and stalling. It was much more stressful and a lot less fun than it might sound, at least that’s how it was for me. John on the other hand just thought I was being a party pooper and ruining an excellent game by being miserable. All my anxiety and my raised voice was just stimulting John even more but in a negative way. He would eventually end up angry and frustrated because I wasn’t playing the game properly or fully appreciating how hilarious Clunk Click actually sounds. It always ended up with John being unable to cope and his behaviour would then deteriorate. I am ashamed to say that my own  behaviour wasn’t much better. It was a real struggle for both of us in general at this time in John’s life as we tried to make sense of his world.

During one particular frought car Journey, ending with John screaming and banging the window with his fists and me crying and banging my head on the steering wheel in frustration, I decided that I couldn’t do this anymore. “Ok ok, you don’t have to wear your seat belt, I give up John. OK I GIVE UP” I put my head in my hands. John stopped banging and screaming, I don’t think he knew why I was upset but from my perspective at least it had calmed the situation. To John I was just a bad looser in his favourite game. “Oh?” Enquired John tentatively……”Yes off” I replied inbetween sobs. “Unclick the belt John, but please just sit still” I was clearly more upset than the situation warranted but the continuing every day stress of trying to do normal things yet failing miserably was tough on both of us. I was beaten by the seatbelt game and I didn’t care. It had been months of trying to make him wear his belt and I was worn out. So what if I got stopped by the police, if they locked me up it would at least be a break from this craziness.

Over the following weeks our car journeys were much more pleasant, we continued to play the seatbelt game with the only difference being that when John unclipped it we both shouted ‘Hurray’. Well I did, John shouted ‘Ay’ and gently slapped my head.

It was during one of these games that I noticed I was being followed by a police car. In fairness to him it must have looked as if John was beating me up as he bounced around and slapped my head. Before long I was pulled over. I wound my window down. “Peez ok” shouted John leaning over me to get a closer look at the policeman. “Lie nana peez’ he continued while I tried to push him back into his seat. “Lie lie lie nana’ squawked John as I managed to poke him in the ribs to move him over. “Shhhh please John, let mummy talk to the man.” Catching my reflection in the mirror I realised I must look very odd, my hair was all over the place from the head slapping and I was red in the face from being crushed by John in his attempt to get a good look at the ‘Peez’ man. I smoothed it down as best as I could and smiled in a way that I hoped indicated that I was in control. Yeah right!

The policeman looked at me closely and eventually asked if I was ok. I assured him I was and that we had been playing the seatbelt game. John immediately obliged by fastening and unfastening his belt and we both shouted Hurray. John then slapped me on the head and squealed laughing. I looked at the policeman and gave him my special smile again. I explained that John was autistic and as such found it difficult to wear his seatbelt. “Lie lie nana” shouted John unhelpfully. To the policeman It probably sounded as if John was telling him what a dreadful fibber his nana was, so I thought I should explain

“He wants you to put the lights and sirens on”  I said nodding in the direction of the car.  Suddenly the police man started to laugh “Oh I get it, he was saying nee naaa and asking me to flash the lights”  Then suddenly and without warning he cupped his hands together and ‘Nee naad’  so loudly and realistically that  John and I both jumped out of our skins but rewarded him a well deserved round of applause.  He got a bit carried away with his virtuoso performance and continued to ‘Nee Naa’ inspite of receiving strange looks from passers by. John thought was hilarious.

The policeman then went round to Johns side of the car so he could have a chat with him instead of leaning in through my window. John obliged by opening the window, “Hah peas mummy yes ok” he asked as he tried to pull the policeman’s cap off his head. I think he has taken a fancy to your hat I explained as John pointed to his head and then at the cap. “Here you are John” obliged the policeman as he plonked his hat on Johns head and pulled it down over his eyes. Johns squealed, bounced and giggled with delight. “Be good for your mum now John, ok” he said retrieving his hat before turning to me. “Now then about the seatbelt, he should be wearing it at all times but in situations like yours we are flexible. Looks like you have enough to contend with love. I will say one thing though, it’s not good getting your head slapped while your driving, maybe come up with an alternative eh?” I just nodded, what could I say he was absolutely right. “I will, I promise, thank you for being so understanding.” Right on cue, John slapped my head and shouted ‘Lie Lie nana’.  I gave the policeman an extra special smile as I drove off.

The next time he had a brush with the law was a couple of years later when he was out with his one of his carers from an agency. They were all wonderful and we couldn’t have managed without them. They would take John out to have a trip on the ferry or over to Liverpool for a couple of hours three times a week, this gave his dad and I a much needed break and some time for eachother. However John could be temperamental in his younger days and if things didn’t go his way he would lash out. Anyway apparently he spotted a bus that he often went on but this time the bus was going straight back to the depot. The the carer tried to explain to John that he couldn’t go on the bus. To John this didn’t make sense, the bus was there with ‘The man’ sat behind the wheel as normal, so why couldn’t he get on? He was allowed on every other time so why not now? All perfectly logical to John, all very difficult to explain for the carer. John became more and more wound up and as they crossed the road John suddenly lashed out and hit her.  Fortunately there was a police car parked across the road and what they saw was a big lad hitting a girl so they ran accross the road to break up what they assumed was a domestic incident.

The first we knew about it was when a police car pulled up in the drive with all the lights going but no sirens. John was in the back being entertained by one of the policemen and having a fantastic time. They explained what had happened, assuring us that as soon as they got to John and the carer they realised he had special needs. They had been fantastic, made sure she was ok before allowing her to drive herself home and then they drove John home the long way round via New Brighton, because they could tell how much he was loving being in the police car and they wanted him to have a bit of fun to make up for his disappointment over the bus. They had demonstrated an amazing insight into Johns needs and I can never thank them enough. They even agreed to the flashing lights once or twice.

We were so grateful for their kindness and for the way they dealt with the situation, it could have been so much worse. John was calm, happy and clearly felt safe in their company. The two officers made sure we were ok too as it had been a bit of a shock. Of the many things John’s dad and I worried about what we might face as John got older, our boy being brought home in a police car wasn’t one of them!

Once the officers established that we were all ok they both gave John a big hug and jumped back into the car. We waved them off from the end of the drive with John jumping up and down and letting everyone know in a very loud voice, that his Nana was a liar. As the car sped away the blue lights flashed for one last time and the neighbours curtains twitched violently as they wondered what on earth had been going on in ‘The mad house’ this time.

Queens, Elephants and The Birthday Boy

John’s birthday weekend promised to consist of very little sleep and lots of cake, just like most weekends really but with the added bonus of presents. The anticipation of his favourite celebrations are often more exciting for him than the actual event.
He always lets me know well in advance what presents he wants and we talk about them for weeks leading up to the day. It starts on Boxing Day and gathers pace once the New Year celebrations are over.

This year he asked to go on the Queen Mary 2 with an elephant.
It took a bit of working out to understand exactly what he wanted. He can pronounce ‘Queen Mary 2′ very well. We have been practicing at bath times inbetween singing rude rugby songs. He has almost got it off to perfection apart from calling her Queer Mary, but the word elephant took some explaining.

First he tried the word…’E-e-um’ I shrugged my shoulders, “I have no idea John, sorry try again”
“E-E-UM” he bellowed down my ear. He often does this if I don’t understand him, believing it will make it easier for me if he ups the volume.
“Nope, sorry I haven’t a Scooby Doo what you are saying, try again.”
“Scoodoo” replied John giggling to himself “Scoodoo mummy” and was helpless for the next few minutes as he played with the new word.
After he calmed down he tried again. “Ehu hum” then he pulled on his left ear until I thought it would tear. “Ehu hum” he said nodding and still holding his ear. Then he let go and waved his arm around in front of his face. “Oh aeroplane! I get it now John you want an aeroplane” he usually pronounces aeroplane quite differently but hey, maybe it’s street talk innit.

“Noooooo er o pay” said John shaking his head for several seconds to make sure I understood he most definitely didn’t want an aeroplane.
He stomped around the room, his arm outstretched and waving it from side to side. That’s when the penny dropped “Oh an elephant,” I said excitedly,
“You want to go on the Queen Mary with an Elephant” I clapped my hands in delight at his marvellous attempts to be understood. John joined in, he loves a good clap does John.
Once the applause died down John celebrated further by giving me a bear hug to let me know how appreciative he was. He jumped up and down on the spot still with his arms wrapped tightly round me, please don’t try this at home at least not unless there is someone on hand with a Blue Peter Badge in CPR. We pogoed around the room until I managed to squeak “Cake”. John was on it immediately and released me with just enough breath to enable me to stagger into the kitchen to get him a large slice of cake. Maybe this would help soften the blow when I broke the bad news.

I took a deep breath and went for it. “John, there is no way you can go on the Queen Mary 2 with or without an Elephant, I am sorry really I am, but mummy can’t make this happen. I haven’t enough money for you to go on the Queen Mary 2 and even if I did the man won’t let elephants on the ship. ( I always blame ‘The Man’ ) Let’s think of some other presents shall we?”

The silence was deafening. John just stood waving his trunk around and slapping his head with it.
I started twittering on about DVD’s, CD’s, talky toys and birthday cakes. I even promised trips to the zoo to see the elephants. John loves the zoo but only for the mono rail. He bounces up and down in the carriage yelling ‘Elephant’ and ‘Giraffe’, waving his arms around and slapping himself into a frenzy. I know that’s what he is saying but to the uninitiated it looks as if he is taking part in an exorcism

The mention of the word zoo seemed to cheer him up a bit, he stopped waving his trunk and said “eBay peas mummy”. He ran off upstairs and I hobbled after him. He wanted me to find DVD’s of Queen Mary and the other two Cunard Queens, Elizabeth and Victoria. I can’t go into how long it took me to work out the names or we would be here all night. Suffice is to say that after it was over I needed to lie down in a darkened room listening to whale music.

His birthday celebrations were exactly as predicted. He was too excited to sleep, needing to keep popping into my room to remind me he was going to be “Twehee thev” and flushing the toilet every half hour. This has long been a favourite way for John to celebrate and it makes him laugh uproariously. At 4 a.m he decided to turn on the shower to add a certain je ne sais quoi, flush the toilet again and then he put his talking Tinky Winky next to my ear, in case I wasn’t quite awake.

He wanted his presents in the afternoon when his dad, Grandad and Rach would be here, so we amused ourselves in the morning by visiting the smelly and the not so smelly shops that are dotted around our little village.
“Burdy Johnelmo” he boomed as he bulldozed his way into the first shop, sending a rack of assorted ladies garments into a spin. He went straight to the CD’s “Chrimmas mummy” he explained as he started to rifle through a big box of them looking for anything Christmassy.
To my horror he found Michael Ball’s Christmas Favourites and tucked it under his chin, to this he added The Mongolian Swamp Singers Christmas Songs and Carols from Strangeways. Ok so maybe I’m exaggerating but they were absolutely dreadful whatever they were called. John told the kind lady behind the counter that it was his ‘Burdy’ and she gave him the CD’s as a present. I thought that was a lovely thing for her to do.
He adopted this method in the next three shops and we ended up with a bagful of free CD’s and some boiled sweets, some of which still had the wrappers on….Eiw!

John loved all of his presents, yes he got the DVD of the three Cunard Queens, (that sounds so wrong ) and I had also managed to get him a model of the Queen Mary 2, he loved it. He also received an assortments of noisy games together with an ambulance and a fire engine with real sirens that wailed at the touch of a button. Cheers James and Rach!

Finally after a busy day, lots of laughter and even more cake than usual he announced at 11.00pm that he was going to bed. He had his ‘Queer Mary’, his ambulance and his fire engine all in bed with him. I tickled him, kissed his cheek and told him I loved him. “Luh u Mummy” replied my gorgeous birthday boy.
“Night night John” I whispered as I tucked him in.
“Neeenaaa Neeenaaa” replied the ambulance and the helicopter while Queer Mary maintained a dignified silence.

Christmas 2014

John was understandably excited when I collected him from Nelsons Croft to spend Christmas at home. As you know by now, when he is excited he finds everything hilarious and can barely breathe for giggling. He was running around the house like a dervish when I walked in, laughing, clapping and slapping himself on the head without ever missing a beat.
All his goods and chattels were packed ready and he had a huge bag of presents from the staff to go under his Christmas tree. A few years ago it would have been difficult to prevent him from jumping into the boot with the presents so that he could open them on his journey home. Thankfully he is more mature now and just feels it necessary to tell me at three minute intervals, exactly how many presents are in the bag.

” Teh pesans, yes ok!” he squealed, helpless with mirth as we heaved the big Father Christmas bag into the car. “Teh!” he giggled down my ear, getting me in a festive headlock so I didn’t miss him pointing at the bag.

“Yes alright John” I wheezed trying to prise his arm from around my throat “I can see the bag and the presents, so get off my neck there’s a good boy” Fortunately just as the pressure behind my eyes rose to dangerous levels John let go and jumped into the car.
When the flashing lights stopped and my vision cleared I drove us home. We sang “Dig dog oh hi” as John calls it and at the end of each very long ‘Gloria’ he leant over and yelled “Teh Pesans” down my ear, guffawing loudly out of the ever open car window while I shivered and froze…..such fun, as Miranda would say.

We stopped as always at our local Sainsbury’s for sweets. John now likes to get out of the car and stand outside by the sliding doors, jumping up and down, slapping and yelling as they go back and forth. I forget how odd he must look because I am used to him, he always draws a crowd, some sharing in his obvious delight while others just staring……you get used to that too and besides it was Christmas, not really the time of year to punch a rude person. John wanted everyone to know how many presents were in the big Father Christmas bag but not everyone quite understood what he was saying. I had to agree with one rather ‘refreshed’ gentleman who had obviously just fallen out of pub across the road, that it did indeed sound as if John had a bag of peasants in the car.
After much chortling the drunk and John shared a bear hug, it was probably a bit longer and tighter than the drunk anticipated and as John let him go he tried to enter the shop by the exit door and walked smack into the glass with a loud bang. John thought it was hilarious and shouted ‘More bang, peas, more bang’ meaning he wanted him to do it again. Dazed and confused the drunk tottered around looking for the right door, seizing the opportunity John and I made our escape.

One of John’s great joys at Christmas is to trawl around the neighbourhood admiring the fairy lights in peoples windows. Over the years we have been mistaken for nocturnal owl watchers, drunkards and even intruders.
I have to admit that the police were very understanding when I explained that as the house appeared to be in complete darkness except for the candle bridge beautifully lit in the window, I had assumed the owners of the property were out, otherwise John and I would not have stood in the driveway staring through the front window for twenty minutes. I told them by way of explanation that John loves candle bridges and has three of his own in his bedroom which are lit up all year round! We hadn’t meant any harm and yes of course I understood completely that old Mrs Johnson, widowed and living alone must have been terrified. I promised never to do it again, at least not at the widow Johnson’s house, and only from a respectable distance. We have kept our promise….well sort of!

Christmas eve and Christmas day consisted of no sleep( John and me) lots and lots of presents (John) and lots and lots of wine (Me) It was as always a wonderful day and I wouldn’t change it for the world. John looks forward to it all year round and he keeps the magic of Christmas alive.
Nearly everything that John received either sang, spoke, played a loud tune or did all three at once. Dad took his hearing aids out and I relied on my tinnitus to drown out the din.

Wishing a happy and healthy New year to you all, have fun, love eachother and stay safe in 2015 xx

How Many Sleeps To Christmas?

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

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

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

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

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

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

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

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

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

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

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

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

Merry Christmas xx


I wrote this post last year after mum died, a couple of memories that make me smile. I just wanted to share them again on her anniversary.

Close Encounters of the Autistic Kind

John’s beloved Nannie, my mum, recently passed away after a long illness. I thought it would be a fitting tribute to her to share with you a couple of stories about the two of them which still tickle my chuckle muscle to this day.

When John was younger mum and dad looked after him for three days a week after school. Being a very creative person mum always enjoyed ‘messy play’ as John called it. She would spend hours with him finger painting, glueing toilet roll holders and various cardboard boxes together, making trains, bridges and generally having lots of messy fun.
One memorable occasion when I arrived to pick John up, it was mayhem. The pair of them were covered in brightly coloured paint and they were both wearing an assortment of cereal boxes fashioned into hats, with paper pom-poms on florists wire stuck in the top. Mum and John were…

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