rebeccaweston

… forget technicolour, I see the world in aspievision…


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What is that farmer doing in the field?

 For over thirteen years I have worked in the same office with the same view over the same field. Each year we watch and wait with interest to see what crop will grow from the seeds the farmer has planted, we comment and rejoice and complain dependant on the results. The rape seed year is remembered with distress by all the hay fever sufferers in the building, myself included, fortunately in thirteen years this has only happened once. We all remember with delight the year the field was left to rest and wild flowers in an array of brilliant colours waved their heads at us in the breeze. If we see grains growing we know that we will all be watching the combine harvester reaping the field as the summer draws to a close.

Today we saw a sight that we had never before seen in the field we had watched through the seasons throughout the years. First a farmer walked past along the edge of the field inserting rods into the ground at regular distances, he was followed by a second farmer with three large spools of wire upon his back which he fixed at even height intervals to each rod creating a wire fence. Now for thirteen years there has been nothing but a bank of grass and a few trees between our car park and this field. Locals wander through our car park to walk their dogs on the farmers’ field. “Why was a fence now going up? What is that farmer doing in the field?” came the excited whispers from around the office.

Then several hours later, amidst whoops of excitement and every member of staff (including directors and managers) rushing to the windows to press their noses against the panes of glass and watch as, for the first time in thirteen years, livestock ambled over the crest of the hill into sight. “There’s sheep in our field!”

Much discussion was had and gleeful anticipation of lambs in the coming spring months shared, followed by the disappointed realisation that they probably wouldn’t be staying in the field. The farmers land extends over the brow of the hill and down into the valley beyond through which a river runs. With the storms across the United Kingdom and flooding through many counties we have been relatively unaffected with localised flooding during the rainfall which dissipates after and large ponds appearing in fields, however the river is high and has spilt over into the field along its bank in places and the weather forecast is for more storms over the coming days. Collectively we deduced that the fast manner in which the fence was erected and the subsequent swift arrival of the sheep was likely to be because their normal pasture was either saturated with water or flooded or the farmer was pre-empting that this would be the case with the next storm. Then, as you would expect from an office of IT nerds (who with my recent diagnoses have all accepted that they too are on the autistic spectrum as to be fair I’m not as strange as them) and autistic financial managers (that would be me), great exhilaration was experienced as we realised we were witnessing in person the ecological effect of the flooding on our local environment.

You can be sure that we will all watch the news this evening with intense interest as the stories of the floods that have dominated the headlines for days now has meaning for us. We have witnessed first-hand a consequence of the natural disaster sweeping our nation that until now held no meaning for us as we had no connection to it. And yes I know a field of sheep in no way compares to the thousands of homes with no power or people evacuated due to flooding but until there was a direct impact on my immediate ecosphere I had no real association with the daily news reports of the devastation.

 


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And the trumpets sounded to announce the obvious finally being confirmed….

….that she has ASD!

“Rebecca’s developmental history and current presentation contain sufficient examples of deficits in the areas of social interaction, social communication, imagination and creativity, sensory sensitivities and ritualised behaviours to warrant a diagnosis of ASD.  Rebecca’s interactional style is very much like that of a woman with Asperger’s Syndrome, given the presence of cognitive skills within the average range (if not above) and the absence of early language delay.  Although all autism spectrum presentations are currently being described as ASD and indeed the latest DSM V (Diagnostic Statistical Manual, Fifth edition) manual no longer contains Asperger’s Syndrome as a separate category, we think it is important to observe that Rebecca’s presentation is better captured under the label of Asperger’s Syndrome, for the above stated reasons.”

I believe you could refer to this as a Eureka moment!


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CHRISTMAS OVERLOAD!

Everyone’s so full of Christmas cheer, planning for Christmas presents, parties and fun, and I can’t even get past the mental processing part of organising myself to get the Christmas tree out of the loft and putting it up….

I have managed (just) to do the shopping, online to avoid all the crowds, but still have a brain block on wrapping them and distributing them out.

Feeling very “Bah Humbug” and wishing I could just go into hibernation till 2014!!!

I am looking forward to seeing my closest family for a couple of days but just wish the Christmas elves would pop out of no-where and do all the little things that need doing for me! Write the cards, wrap the presents, send them out, decorate the house and then un-decorate it in the new year and put a big “DO NOT DISTURB” sign on my front door….

Am I the only one that views all the impending socialising with feelings of dread? Exhausted in advance at the mere thought of that inane chit chat! Knowing the “down time” I really crave to enjoy whilst on holiday will not happen and I will return to work on 2nd January almost relieved to be sat at my desk, lost in my screen and not talking to anyone!  


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Processing failure, possible reboot required…

Can someone tell me how to process this all please?

  1. My Son has his final statement review next week before leaving school
  2. My Son finishes school next Thursday and is then doing GCSE’s from the following Tuesday and I have to remind him every 5 minutes to revise or he “forgets”
  3. I have to go to my Sons Leaving Ceremony on Thursday 9th May
  4. My Daughter has her first of five settling in sessions at Nursery next Tuesday before she starts full time on 20th May
  5. My partner starts working full time again on 20th May
  6. I have an assessment booked for 21st May by the Mental Health Team for AS
  7. I have a hairdressers appointment tonight
  8. Both my Son and I have Osteopath appointments next Wednesday
  9. I have an appointment on 7th June with a Consultant Orthopaedic Surgeon arranged by the company trying to claim damages for the Lorry driving into me on the motorway last November
  10. I am waiting for an appointment through to either have an MRI or see an Orthopaedic Consultant prior to having an MRI as my Osteopath referred me to my GP who has referred me for an MRI to see if the numbness and decreased reflexes on my left side plus increased Migraines has a muscular or skeletal cause which has been made worse since the bloody lorry drove into me
  11. At work I have to get everything up to date as of… Yesterday?… As the MD has me project managing the implementation, including all work flow rules, of a completely new system and training of users and apparently I need to be a “Super User”
  12. I need to send My Sons Statement and Young Persons Transition Plan to both Colleges that have offered him places and arrange to met with the SENCO at the College we haven’t had a meeting with yet
  13. I need to worry about Money and how we are going to pay for the Nursery each month

On top of all that whirling around in my head I need to do the ASDA order tonight and function through “normal” daily tasks while staying “connected” with my family rather than withdrawing and possibly being found under a desk hugging my knees while rocking back and forth!

I know I’m struggling to process; the fact that all food appears to be poisonous to me and results in daily throwing up and I have been unable to manage most meat for several months now is always the first clue!

In the last few months the difference between how my partner and I “process” and deal with the never-ending demands of life and parenthood has become increasingly apparent. My partner becomes hectic trying to run around and do everything and be everything to everyone while becoming ever more vocal on how tired he is, or stressed, or how much he needs a break. In stark contrast I have become quieter, to the point my partner says I don’t tell him anything and we don’t talk anymore, internalising everything, plodding on through the endless lists with each step seeming harder to take than the last while physically I become sicker and sicker.

Anyone who is diagnosed or believes they are on the spectrum will know some days are harder than others and sometimes the days become weeks and the weeks become months.

When did I reach the point where I have to remind myself to make eye contact with my 15 month old daughter?

It’s become a tick list, remember to smile at her, make eye contact, don’t leave without giving her a hug, talk to her in a voice that’s becoming increasingly like that of a presenter off CBeebies as you don’t feel like saying anything at all! Reminding myself all the time that I will get through this and when I come out the other side I don’t want to realise that she has felt my distance, lost her connection with me, that I have failed her!

With my Son it was easier; he needed downtime himself so when I felt like this there was a break, enforced by his need for time away from the human race! But even so there was a particularly challenging period when he was about 6 years old, when I become so distant he noticed but said nothing. Nothing until I got through it and then, as I started to feel and connect again with the world, in floods of confused tears he told me how let down and abandoned by me he felt! I had failed him then and I have tried in every way to never let that happen again no matter how much I am struggling.

I cannot allow this to happen, I will not let my Daughter feel abandoned by me nor will I let my Son go through it again!

So let me repeat the question, can someone tell me how to process this all please?


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Can an Aspie have STYLE?

“A change in perfume can cause distress to a child with #autism”

Recently I saw this retweeted on Twitter and it brought back a flood of memories from my son growing up, from not liking a new haircut to declaring when confronted with me in a new item of clothing “it’s just not you!”

Fortunately my son copes better now with any changes in my appearance but persists in wearing old items of his own clothes that no longer really fit rather than any new item I have purchased for him! There are also certain t-shirts that he can no longer even put on that remain in his wardrobe as any attempt to throw them away causes extreme distress. He physically feels “wrong” when putting any item of clothing into a bin. It’s a feeling I can understand as I have to admit that I feel this myself and it stays with me for sometimes up to an hour after putting any clothing (including footwear) in a bin, it’s like the feeling of crawling skin but instead of my skin it’s inside me.

Thankfully we have overcome it to a degree as between the two of us it could have genuinely become an issue… there are those that probably think it is an issue considering my sons old t-shirts and my two double wardrobes that you can hardly squeeze anything in but that I, in reality, only wear about a quarter of! However I consider this an achievement, we no longer hoard my sons socks that are either too small or full of holes and I no longer hoard clothes that are more than 3 sizes smaller than my current size… well I had to apply some rule to the discarding of clothing and it seemed reasonable to assume that I would never shrink more than 3 sizes! On the down side my size has somewhat plateaued over the last few years so the two double wardrobes are no longer really containing all my clothing and shoe size never changes so I have far too much footwear!

But I have digressed from the original retweeted tweet “A change in perfume can cause distress to a child with #autism” and the sequence of thoughts this generated in me! So let me try and lead you through them, and I apologise in advance if we meander along the way!

Now, where had we got to…  retweeted tweet… my son not liking my changes in appearance or style… my son’s dislike of new clothing!…

Now let me just clarify that last thought, my son will wear new clothes when purchased in line with the following criteria…

  1. He must have chosen them
  2. They must be in primary colours
  3. All labels must be cut out
  4. They must not have any wording on them that he deems inappropriate

 

Now you may suppose that point number 1 invalidates point number 4 as surely if he has chosen the clothing he will have assessed the suitability of any wording on the clothing? You would however be mistaken! What he may initially find humorous he will then decide is inappropriate for a certain audience or occasion and once that small seed is planted, it grows, until eventually it is inappropriate for all occasions and is left discarded in his wardrobe, but not so inappropriate that it overcomes his clothing/bin phobia until I force the issue!

Now here’s the link in my chain of thought so follow with me… Why does he change his mind? When he was little he didn’t! If he liked it that was it!

It started as he started trying to find a sense of self in his style as he grew through his teens, and that’s the problem with Asperger’s Syndrome, awareness that you are different and don’t fit in which causes you to try too hard to fit in. Like most kids on the spectrum my son just didn’t care about his appearance, he would wear something because he liked the colour or it had Thomas on it (one of his childhood obsessions guaranteed to make any item of clothing acceptable to him) but as his peers in secondary school changed, found their style, joined a group, became a type, my son was left wondering what the hell was going on while being acutely aware he didn’t somehow fit into their defined styles or groups or types. This was the start of a much laboured and as yet unfinished journey as he sought his style identity while having no concept of style! He liked Family Guy so step one was to buy a Family Guy t-shirt, which was later discarded as he discovered that what Stu said and made him chuckle didn’t correctly represent what he would say and was therefore deemed inappropriate. There was then a serious of humorous quotes t-shirts, these all made him chuckle in the shop as it was very obvious humour, shall we say “carry on style” or “toilet humour” and if your British this will definitely provoke an image, however in reality these quotes were tantamount to making a statement about his level of confidence, both as a man and a person, therefore they were deemed inappropriate. Then there was the added confusion of not being associated with the wrong group, as it turns out in particular he did not want to be considered a “Chav” as he did not agree with what he perceived to be their views. This meant despite the fact that he was more comfortable in track suit bottoms these were now deemed inappropriate and as his understanding of style is limited he couldn’t distinguish between track suit bottoms that were chavvy or just sporty and therefore “the baby was thrown out with the bathwater” as the saying goes. This led to a long search for comfortable jeans. I have tried to intervene at points, especially when I realised that his extensive collection of primary coloured clothing meant that he had somewhat the appearance of an oversized toddler! However no amount of persuasion can convince him that a primary red t-shirt would look less like he was a giant 3 year old if worn with a grey or black hoodie rather than primary blue or green one!

At this point my thoughts divert along the path of colour and what colours my wardrobe consist of, so here goes….

My wardrobe is predominately black! If I were to sort my clothes into colours there would be too many black items to fit in one of my two double wardrobes. Which, in point of fact, is one of the reasons I stopped sorting by colour some time ago and now have a system that includes tops in one wardrobe and bottoms and dresses in another with the more frequently worn tops in the wardrobe on the left of the chimney breast put on the left hand side and the more frequently worn bottoms on the right hand side of the wardrobe on the right of the chimney breast with the dresses in the middle and the never worn items on the left!… Well it makes sense to me anyway… Over the years I have tried to force myself on occasion, mainly initiated through comment from others, away from black and this has lead to a collection of grey items and neutral tones. I also now have a smaller collection of “one off” colours that I can manage to wear if everything else is black, for example a blue top with black trousers, a black cardi and black shoes.

This led to me thinking beyond the colours to the styles and realising that at 38 I am still trying to find mine! While friends I have manage to move with the fashion while retaining a sense of their own style I struggle to have any style! Which leads me back in full circle to my first sentence and my son declaring when confronted with me in a new item of clothing “it’s just not you!”

How strange to realise that he was right, even as a toddler, as I went out and tried so hard to buy a new outfit that was fashionable while correctly portraying “me” yet when I put it on it was like a stranger staring back at me from the mirror…

Who am I to comment on his journey to present himself as himself to the world while I still struggle to do the same?

At the end of the day what is wrong with him looking like a giant 3 year old and me looking like a middle aged Goth?

Maybe I should just let him be, encourage him to stop trying to fit in and just wear what he likes (currently anything with a star wars theme does the trick) and maybe I should do the same. Accept that my style has nothing to do with the normal concepts of style and more to do with the self imposed rules that every time I ignore in an attempt to be fashionable just leads to another unworn item of clothing in my wardrobe.

So here’s my list of rules.

  1. Buy black
  2. If black is not available then grey or neutral tones are acceptable and occasionally muted blues or greens
  3. Do not buy red, you may think it looks striking but you will NEVER wear it
  4. Buy V necks
  5. Never buy anything with a high neck as you will never wear it because you will be worried you’ll feel like you are being strangled all day
  6. Remember you’re more comfortable showing cleavage that covering your breasts so they join together and look like a monoboob!
  7. You are 38 so you’re not going to suddenly acquire the confidence to be okay with “skin tight” that’s the truth so just deal with it!
  8. Remove all labels before wearing
  9. Stop trying out new perfumes when you only want to wear paco rabanne ultraviolet and you only do it because you’re worried it’s more of an evening perfume than a daytime perfume, you like it so wear it!

 

So what if I looked like a middle aged Goth who shows too much cleavage and smells like she’s on a night out! That’s just how I roll… and yes the giant 6 foot 3 year old standing next to me is actually my 16 year old son!


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The world of Autism Bloggers, a delight and a minefield!

It’s been a week since I joined twitter and happened upon Autism Bloggers, both Parents of Autistic children and those that are Autistic themselves, and it’s opened up a whole new world for me to explore!

I am discovering a wealth of information and developing a profound respect for the unadulterated honesty from some of these Autism Advocates. There is so much knowledge shared and just hearing someone describe experiences and emotions you have yourself lived through and felt makes you realize there are others who could conceivably empathize with your own experiences.

Now I know that there have always been groups out there that I could have joined, but being the way I am… well, being a “joiner” has never been something that has appealed! Walking into a room full of strangers… I think not!

However this new world seems to have a whole new set of rules, acceptable and unacceptable terms, etc, etc… It’s taken 38 years to get some sort of grasp on the Neurotypical world… and counting… a work in progress shall we say… and now I have to learn about a whole new community with it’s own social conventions, generally accepted standards and criteria but no-where does it stipulate what these are!

There also appears to be division and discontent with how others within the community are portraying themselves and people feeling that this does not accurately reflect their own experience with Autism… A drawback of Autism, an inability to “put yourself in someone else’s shoes”, which takes me back to my previous comment that reading some of these blogs “makes you realize there are others who could conceivably empathize with your own experiences” and I question whether I am searching for a grail that is unattainable…

… So here I am, one week into the world of Autism Bloggers, definitely a concoction of admiration, delight and knowledge all liberally sprinkled within a social minefield!


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You made my special world, our special world!

My son has now been in America for five days and his absence has really made me appreciate the sparkling radiance that illuminated my world the day he was born.

Until that day I was alone in my special world, as a child this was a fantastical place, filled with adventures and creatures conceived in my imagination fuelled by my love of literature! However as I grew up the demands of my peers for me conform to their concept of an “acceptable member of conventional society” penetrated the stratosphere of my reality. The latter part of my teenage years seemed to be a period in which the darkness sought out and extinguished every last flame of belief and hope in this magical existence… Much akin to the way “The Nothing” swept across Fantasia consuming everything in “The NeverEnding Story”.

However this all changed the day my son was born. Little did I know on that day, as I gazed in wonder at this perfect miniature person, how not only would he dispel “The Nothing” from my special world but that I would no longer be alone as it transformed into our special world.

It’s the little things sometimes that make it so amazing, the shared routines, the mutual understanding of how we interact with our environment, the ability to laugh together at our “Specialness”.

Each day “The Nothing” has been forced to retreat ever further, and since my sons diagnoses with Aspergers 6 years ago there is no remaining sanctuary for “The Nothing” within our magical kingdom as with each step taken to understand what this means for him I have learnt increasingly more about myself and my journey.

It is hard to explain in words what delight in my existence he has given to me, how the perception of my “quirks” has altered from disadvantages to gifts, how a shared Aspie reaction or “tic” can cause uncontrollable “my cheeks hurt from laughing too much” hysterics rather than embarrassment or shame.

You made my special world, our special world, and I thank God for that every day.