Gyms Dinosaurs and Honesty

Black and White

Life cannot all be described as "black and white" as there's is a lot of grey as well in my opinion at least. Whilst I have said in my profile I hate liars I do agree that small white ones now and again to protect someone's feelings are excusable - I've done it myself. 

Years ago I went shopping with a very dear friend who asked my opinion on a dress she had purchased and was so excited that she had got it. The fact she looked like my grans  old sofa in it was not a comment I had the heart to make, neither could I say it's best to keep your coat on when you get there. So I just said she looked fine and she went off extremely happy and we still remain friends now many years later. That in my book is not lying, its a grey area granted but it isn't. Now apply this situation to Jonathan - "yep you knew that's where I was going to go didn't you?" We'll he can't do it, not even the little white ones which is frustrating and often hurtful especially after I ask "do I look fat" or "did you like my hair blonde" questions. I've always been less than pleased with the replies, this also applies to days out we have been on where I have spent money on tickets for concerts or shows for us both. All I want is a polite "yes thanks it was great" which would suffice rather than "that was Aspie hell" or "you owe me for going" comments he sometimes utters. 

This has also happened at home when I've spent hours wallpapering or painting a room only to have him tell me "it looks terrible" - I've tried so hard to live with this and to be fair he now says "what do you want me to say" which is kind of funny as I still know he hates it. Many times I've dreaded the kids or friends asking him stuff as I know they will get the same honesty which is often difficult to take. I try to remain calm in a a difficult situation but on occasion I have snapped and my retorts have not been very nice I have many times regretted deeply some of the things I have snapped back at him and i have seen the hurt expression on his face but he has often pushed me to snapping but I instantly regret what I have said  unfortunately he is  totally incapable of realising they are not always meant, and I do not have an endless supply of patience.

This is why I feel a support group is so important!

I joined a gym it was time for me to chill, relax, swim and enjoy time to myself. Not to necessarily jump on a treadmill and do a 50k run but more to recharge my head, a time to plug in my iPod and tune out my stress plus the chronic pain that's always with me. But blimey it's a stress in its self, nubile women with perfect bodies, toned tanned and gorgeous in the evenings or day times older ladies who dare I say it need ironing or frustrated mums with noisy children! I've had less stressful fillings! at the dentist. I have driven there and looked at the parking and turned the car around  and come straight home. Therefore I need the motivation to start getting out of my little Citroen C1 and going in because the only thing getting a workout at the moment is......my car. I always take the long way home and I will arrive home to a cup of tea and a smile and calm will have been restored so in that respect the gym is worth the money!

See life can be difficult it is for everybody but surely it's that difficulty that makes the good times so good and coming home to Jonathan after a bad day to his kindness, humour and thoughtfulness, to a meal he has cooked for me and his copy of the "History of the dinosaurs" that makes all the stress melt away 

All be it Temporarily .....

For you Amanda

Rocks or people?


Today's blog is one I hoped to write many months from now, a very dear friend of mine passed away from cancer yesterday after a long battle with the disease.  I loved her and we had a friendship that spanned about twenty years.

We worked together originally, then many years later we worked together again - much to her amusement. We were not allowed, after weeks of hilarity to sit together as we apparently disturbed the other members of staff. I will never forget her filling the bubble tubes in the shop (our first job) with bubble bath which eventually lead to an isle full of white foam about two foot deep - that isle floor was 3 shades brighter than the rest for many years!

Nor her antics with the microphone forgotten but best not repeated. Many times her laugh would penetrate across the shop floor or her choice of swear words - yes she often made me cringe but her sense of fun was infectious. Many years later she still had it despite terminal illness - she still rang and texted me regularly to make sure I was ok as she knew I was suffering with my fibro.

Rip Amanda you fabulous lady I will never forget you......

This leads me onto a topic or question that fascinates me, I really did love ‘Manda’ -  I got back from her, entertainment, support , friendship and a relationship that however much it hurts now I'm glad I've had. I can lay in my bed and replay some of the naughty things we did together and I still laugh! I can smile to myself when I remember her putting on her phone voice which sounded so ridiculous I actually had to leave the room. How could you prefer the company of a rock or a fossil to a person - a funny one of a kind like her?  I will never understand it, I am a people person I need others around me I am happy in their company whilst I do get days when I do prefer Horace that's down to me not them?

Jon has a built in affinity with stonrs and fossils but not people – they baffle him….he can’t share them the way I do

My fibro makes me tired it makes me scratchy some days but it will never stop me being me. In the same way I can't understand Jonathan's allegiance to stones, books and fossils but I have to respect that if they mean as much to him as she did to me then - who am I to tell him to get rid of them , I can't can I? It's what makes him Jonathan, all the boxes, books and piles are just part of his personality.

So in order to keep all his possessions safe and not necessarily under my feet 

we just need a bigger flipping house xx

Goldilocks and the three bears

 Living with a literal thinker can be difficult if not a bit frustrating. Say for example, I dish up a couple of plates of fish fingers and chips, One with two fish fingers and one with three.Jon will say "which one is mine" - I will answer - "the one with 3 on it". A while later he returns into the dining room, a puzzled look on his face and no food - ? - because neither plate had a number 3 on it!  It wouldn't occur to him to count the fish fingers, you may laugh but it is so annoying - haha.

If I have a chicken in the oven and he goes for a drink of water and I say "have a look at the chicken for me" he will come back and say - "it's ok it's STILL IN THERE,,," - now that's just plain bloody frustrating but it's something that actually endears him to me even more - well eventually! It's that almost childlike ideology which is priceless and sometimes a great sense (source?) of entertainment.

I always try and take a deep breath, count to 361 and continue through gritted teeth - haha 

We helped out years ago at a school who specialise in children with Aspergers and most of the children boarded. All were tiny little dots under 5 and all mini Jonathan's, full of obsessions and the beginnings of collections with ideas all yet unspoilt by the everyday pressures life can heap upon you.

Every morning that week the children would refuse to eat their porridge, preferring to eat toast instead.  Not one child would touch it or even look at it for that matter. In conversation at the end of the week the teachers realised the children had been reading Goldilocks and the 3 bears. In the story at breakfast time Goldilocks sits down to eat her porridge whilst all the bears watch, the relevant line in the story goes something like this
 " so Goldilocks sits down to the table and all eyes fall upon the porridge"....

See - literally just like Jon - every child believed if they looked at it or tipped their heads down their eyes would fall in to their porridge .......... poor kids were terrified

Jon tends to use this literalism in his artwork - so it can be a pain but it can also be a source of unusual inspiration too - which works

Anyway more later but tonight my hands are bad so please forgive me but I'm signing off xx

Woody and Buzz Lightyear

Funny title isn't it? I bet you are wondering why I've chosen it .....

It's an analogy I came up with whilst talking to a councillor years ago,as to how it feels when Jonathan meets new people/artists whilst on his travels,it feels for me like Woody does when suddenly your not exciting enough anymore sad but true. Not all of his new friends but certainly a couple have had this effect but none of them have lasted the distance. 

I am Woody, the original toy who is always there like a faithful friend loyal and totally honest. Then along they come each one all, shiny new and exciting as they make all the correct noises and promise the earth - everything is wonderful, the conversations flow and suddenly their names crop up in virtually every sentence,  and all the warning signs start flashing - well for me anyway. Aspies often believe all what they are told literally,  therefore if you promise to help you must do so. If you are trusted enough to be allowed to hear his innermost feelings then don't months down the line abandon him or use them to somehow point score against him. These people or Buzz Lightyears, come and go but each one has left a mark on our marriage. Just for a moment don't get me wrong, we are not talking sex or a full blown affairs here, he is not like that but sometimes the in depth discussions with other women do feel like it as each one is always understanding things so much better than myself. The last time was the worst and I have refused to go through it again. I think he now knows the effect it has on me and the fact people cannot always be trusted.

I had a friend once who after leaving the place where we met to go and work somewhere else, returned to see me to persuade me that I should join her. I went and had a look and was impressed with what I saw I got an interview and indeed a job! I handed in my notice and my boss refused to except it ..... She had applied behind my back for my job! 

Whilst I have never met anyone else as evil or devious as her it taught me a lesson and a valuable one too, I just wish Aspies, Jon in particular could also learn it - but i know he cant. I have some good friends and I am grateful for their support over the years but I don't always believe what I'm told by everybody and being told you are the topic of conversation in the canteen hurts especially when it's your so called friends doing it. I can't protect Jon from such things as well, all I can do is be there and try not to become too involved - pick up the pieces afterwards. I do not  enjoy this in the slightest as so much of me wants to shout 

"I told you so" 

but its my responsibility isn't it ? as he looks out for me when he can.

He has a large collection of stones from places all over the world - he always has one in his pocket or on his desk. These are his friends, he feels safe amongst them and he has recognisable long term favourites too. I took one into work and he became very upset that I took that particular one - I had to return it as soon as I could. Whilst I don't completely understand, as I get older more of me does and I feel relieved he has them because they make my life a bit easier as they calm him down.

Hah! - Maybe they might work for Horace who at the moment is running about madly in the sunshine chasing his shadow? I am learning everyday but now I am wondering what the heck I've started and can I ever stop ...........?

Sleepy Pussy Cat

Sshh Sleepy Horace after today's excitement

 

Peace and quiet

Jonathan goes away sometimes , just over night whilst he works at Cambridge Autism Research Unit. I used to dread these trips but now I kind of treat them as a form of almost respite care - haha. Time to myself to wallow in deep baths, to watch trashy soaps and to watch as many adverts as I like! 

The last statement is correct if not a little bizarre - Jon hates them and when ad breaks appear will flick maniacally through the channels often cursing whilst doing so. I often point out the ad breaks are nearly always at the same time on all sides but I don't think he has grasped this - haha. I have also been to our local M&S at 8.30 as they close at 10pm just because I could! I tidy the house the day he goes and I don't need to do it again until he returns with loads of washing, fossils and train time tables (more about that later in another blog) 

Strangely enough though after a couple of days I begin to miss him and the constant noise he insists we have to listen too (he has a radio on most of the time). I find myself sleeping in his T shirts and talking to the cat. I get excited when he rings then annoyed as he often just tells me what he has been up to, telling me everything hurriedly in a kind of matter of fact manner. I will have had a take away and driven through the drive in, a luxury he won't ever experience!? I don't get why but he refuses. By this time I will be feeling guilty as I've eaten to many calories and am very lonely. He is my life you see, my world, without him I am lost. I've become so used to looking out for him I've kind of lost my identity in the process- this I hope to reclaim through my blog. I am striving to step out again on my own as myself even if its only for a few moments whilst I type new words and mould sentences. Please don't think I resent him I don't I adore him and the crazy madness he has added to my life but if you step away from it you realise just how manic it can be.

At this very moment I can hear him upstairs playing with Horace acting out some battle or something, bombs, planes - the works, so let's step back in to regain some order in the house before one of them gets hurt........

It's been a good day

Link for Jonathan

PS

In case you were wondering what Jonathan actually does I have attached a link to his project blog for his work as artist at The Autism Research Centre with Simon Baron Cohen - I will over time also show you some of his illustrations etc but please enjoy this for now x

http://www.a-n.co.uk/artists_talking/projects/single/2266871

Driving from A to B

Driving me - from A to B 

I learnt to drive years ago before my first daughter was born, I had seen all these poor mums with prams shopping bags and toddlers on the bus and I decided that was not going to be for me. I took ages learning but once I had passed my test and I had purchased my first car I was independent and I loved it.......

Then I met Jonathan!

Suddenly I was not the confident driver any more and the dreaded speedo was more important than the bloody road! We will be going along and he will say "your doing 31 love" or "it's only 40 along here"  or "speed camera" now. I am not a maniac, speed freak or a budding formula one driver but blimey 31 how shameful. Also he has set my sat nav to ring a bell every time I go over the speed limit - so I have both of them on my case. I find myself on long trips almost resigned to the fact that within 30 mins my blood will be boiling and I will have planned his murder at least 3 times. The last time I actually demanded the sat nav was turned off or he had to get out. All this aside, he can go anywhere once and even years later he will still remember the way - incredibly. I get lost almost weekly, in fact when we moved into our house I went out for a loaf and had to ask my way back from some kind old lady - haha. Anyway, his memory is amazing, mine is not! In fact, I worried for months if I was perhaps developing altziemers or something, as I would find my bin liners in the freezer or washing machine still not turned on after I was convinced I had done so. After I watched 'Finding Nemo' I related to the character Dory so much, it was her 'just keep swimming' attitude that kind of works for me. All this forgetfulness has since been attributed to my fibromyalgia.

Fibromyalgia sucks, its chronic pain in the soft tissue that as well as the arthritis in my bones means I pretty much hurt EVERYWHERE. This and the itchy skin, lack of sleep and fuzzy head, oh and the sudden urge to launch myself onto the floor legs akimbo - makes me a catch to say the least.  With all this including Jons panicking we really are the ideal dinner guests, in fact that's probably why we stay in a lot. My condition is very closely linked to chronic fatigue or ME, so I'm often to tired to venture out. I long for a job I really enjoy that would give me the freedom to do other things but I feel this is pretty much 'IT' for me, so I am really enjoying the freedom this blog is awarding me. The release from stress sharing the pain and 'aspiexcitement' - kind of makes it slightly less frightening - well at least for me anyway, you guys could be tearing your hair out reading it for all I know.

Jon has reacted well to me being ill, he is used to me falling over and now carefully piles all his stuff up at the side of the room - not in the middle! He has taken over certain jobs in the house completely including cooking as  can no longer get hot stuff out of the oven as well as forgetting its in there - he has to do it. We are a good team despite us both being ill in very different ways and are learning to adjust to each others needs. 

Since the children have fled the nest, this stage of our lives should be about things we want to do after many years of 'duty' but I find life rather cruel in some ways as I'm not able to easily do the things I dreamed I would once free. Oh well in reality neither of us has an actual death sentence as it were and we can still laugh.

We laugh lots, oh yes we LAUGH lots but sometimes for the life of me I just can't remember why!? 

Trains pains and Theatres with patience

'Trains, pains and theatres with patience'

Every couple argue, in my book it's healthy to have a bloody good shout to clear the air. I prefer the shouting kind of man rather than the sulky kind of man. Years ago I went out with a chap who if he didn't get his own way would refuse to talk to me for sometimes days. I got very sick of his sulking and kicked him into touch very quickly, I'm not one to pander and beg a man to talk to me nor will I not stand my ground if I honestly believe either my opinion is correct or valued. It can be very frustrating therefore living with a literal thinking man and it can be a challenge to say the least! 

When we got married, only a few years ago, my very much missed mother-in-law actually publicly thanked me for not killing him much to everyone's amusement but she was not joking - not really. How can you go through life without being able to scream obscenities and know the person on the receiving end knows you really don't mean it. It's just you letting off steam as you've either have had enough of all the questions or have had a bad day. This is the reason I held back on writing this blog as I do not want Jon to become a figure of fun - it's not like that at all But if I can make just one person laugh, I will be delighted.

I have received some wonderful comments a few have actually made me cry, this crazy mix of counselling and patience is and has been my life. It's a life I wouldn't change for the world but I have craved the odd day off now and again. You see I see it like this, when my girls were little if I went shopping and I went through the checkout loaded with shiny  sweets I knew they would play up! So I would wait in one that didn't have any sweets, my choice which made life easier unless of course some person in front had shed loads of food with not enough money. It did happen to me once, haha - but you get what I'm saying  obviously (sorry I'm rambling). Well my life is like that, I have to plan in advance, no instant days out, no short cuts home, no surprise presents or parties - every thing is planned. It can make for an exciting Christmas I can tell you, but that's another blog post. 

We went to the theatre today, a treat for me as my fibromyalgia has been shocking again - some more in another post later about that. I was pleased the people we sat next to were not drowning in perfume nor did they sing or talk to much (Things like that I dread as they can spoil our trip - Jon cannot stand it). It turns out the show was delightful, no one ate noisy crisps or kicked the back of the seats, then as we left, behind us I noticed a small boy about 5 dressed from head to toe in a Darth Vader costume including mask !!  He marched past with a swish of his cape ....So cute !

May the force be with you............

Today has been a good day x

Check checking and check again

'Check checking and check again'

Well I'm very excited as I had some nice comments regarding my first effort - I hope this one is as well received so here goes:

Every time we leave the house the conversation goes like this........

Jon "is the door locked ?"
Me "yes "
Jon "are you sure."
Me "YES! "
Jon "ok let's go"
I then start the engine and drive off
Jon "you sure you locked the door?"
Me in a rather louder tone "YES"
Jon "I'm not sure can we go and check?"

Aaarrrggghhhhh

So I turn car around and drive back to the house and we start all over again !!!


Once I refused to go back and I swore at him loudly ...oops ...all day he worried we had left the front door unlocked in fact he drove me so mad with the constant questions we came home early. So I've learnt it's far easier to just go along with it, this applies to the windows, doors ,kettle and even the toaster that has to be unplugged just in case it decides to toast thin air whilst we are out! All of this is frustrating to say the least but its part of him, I can't change it, so I try and have a giggle, after all I knew what I was getting into very early in our relationship or did I?

I had emergency surgery very early on in our relationship, when I awoke from my operation I was surrounded by hand drawn pictures and a plastic camel! The camel I still really don't understand but from that point I realised Jon was special if not a little different.
I can still remember the ward nurses being more worried about him than me as he appeared to be completely lost and visibly upset when he had to leave, so much so they agreed he could have an extra hour by my bedside! That in my book is love, not the expensive presents, the flashy hotels and meals in restaurants (and the credit card bills that go with it for most of us anyway!) don't get me wrong now and again they would be most welcome!! Jon yes that's a hint but that camel means a lot to me, even now.

It's so easy to get completely sucked into spending copious amounts of money on sparkly diamonds and designer labels but do they really make life so much better? See I don't have to worry about Jon saying he is somewhere he isn't, neither do I worry he is out drinking with the boys. The best thing about living with an Aspie is his almost child like honesty and the fact he is incapable of being anyone else - that is priceless in my book.
I've learnt a lot over the last 13 yrs, I've been present when Jon has been a guest speaker at universities and schools. Often this is to audiences who have also struggled as he has with dyslexia or Aspergers but he is not ill, he has no disorder or disease as i have heard it referred to. He has a difference yes but it's that difference that makes him Jonathan and for that I am glad! But I've learnt too never ask him does my bum look big in this? If I'm not prepared for the reply!

Be kind it's only the first one

Be kind its only the first one - April 4th 2013

This week it was Autism awareness week I felt it was a good time to start this blog. I have wanted to for a few years now after a few kind words from a lady who I spoke to once many years ago who described me as the strongest person she had ever met.  I was amazed as at the time I was a quivering jelly like substance who cried every time someone even looked at me strangely but a lot has happened since and I've never forgotten her.

I felt it was important to write this after I had enquired many years ago, if there were any  help lines/support groups for partners of Aspies who struggle with the day to day realities. A place where you can go AAARRGGHHHHH and people understand! Most of the people I have spoken too do not. I love my husband to bits but there are days when I could easily cut him up and bury him in our back garden but comments such as "leave him I would" are neither helpful nor constructive. I was told that there are no groups for partners but lots for parents? when I asked why I was informed no one stays married? This is ridiculous we have been together 13yrs? and I have since learned I am not alone. It's ridiculous to say such a thing he is a brilliant husband thoughtful, loyal,honest and hardworking but also well a bit nuts. This is the BEST quality of them all and the one I want to share with you as he has made me laugh and cry over the years but life is never boring.

I don't think I could live with anyone else now I have learnt the ONLY place for the coffee table is in the center of the lounge, country music summons up the devil and the colour yellow tastes of mold. Such things have almost started making sense, I say almost as I feel its a slippery slope that .... lets not go there eh?. I am neither clever, talented or even beautiful for that matter but the one thing I do have is a sense of humour and this has carried me through the last 13 years.  I have often been told I should write a book but I cant spell and have no knowledge of grammer at all, and I write as I speak with all my school reports stating if I was as interested in my studies as I was in talking I could be Einstein! so here goes 

I joined a gym as I was very unhappy and thats where we met, he was a struggling artist/poet who invited me to see his etchings and I was actually very disappointed as he did actually mean his etchings. I have since learned he never says anything he doesn't mean. He has a sense of naivety about him that I find very attractive and he has never lost that. Don't get me wrong I am not looking at it in a way as a mother would but he is not the typical lad who talks women and football, I found him a breath of fresh air. He treated me like porcelain he text-ed me when he said he would he listened to me intently and he appeared to know more about me than anyone else ever had. I didn't need to explain, it just was 'I became his world'. I would find notes cards etc all confirming this and I loved the attention, i felt loved and special so I fell head over heels in love with him.

One day I found him crying as he was so worried about wallpaper colours as he couldnt live with any run of the mill print I would choose. He had to have the final say in any decor as he is unable to compromise which struck me as odd and I really didnt understand what he was trying to tell me I do now. 

OH 

        I

           DO

                NOW 

Every house we have lived in the coffee table is always in the middle of the lounge, no more can I come home from work and move the furniture around like I used to as the furniture either 'tastes right or wrong' therefore its always the same. I cannot have the brilliant white paint work i used to love and I cannot have the wild bright prints I used to have every where. Our house is a mad mix of William Morris prints and greens and greys. Waterhouse ladies on walls and no carpets on the floors. Our cat Horace, a very resent addition has learnt that certain areas of the house are no go areas and that all the pebbles/stones in piles are in fact not to be played with but Jon's precious friends gathered over the years but I'm afraid the dried seahorse he has had since he was a child has since lost his head, oops naughty cat! 

It is a mass of stuff most of which kept since childhood and deemed to be precious. I used to spend hours sorting and chucking stuff in my home and a 'trip to the tip' was always exciting but again this rarely happens now. Don't get me wrong I love our house the clutter the loft/office full of boxes its ours but I do often crave open space and anything from IKEA.

I came home from work once to see all my knickers and bras strung up on fishing wire outside our flat blowing in the wind, all my tatty ones as well! Jon and the kids all smiling and laughing it was a celebration of me coming home. I was bloody furious to start with but over the years I've warmed to it and it really was kind of sweet. They were genuinely pleased to see me, few people have love like that the kids have grown up but Jon is the same. I was lucky and that feeling keeps me going even now nobody has what I have its not always easy but its always different and i wouldn't swap it EVER