It never hurts any less, it just gets longer ago

It’s two years today since my second pregnancy loss. It’s two years today since the worst day of my life. It’s two years today since I went for the scan that changed everything. It’s two years today since I found out you’d gone.

I knew something was wrong when there was just black on the scan. I knew something was wrong when he turned off the screen. I knew something was wrong when he spent ages probing me. I knew something was wrong when he didn’t say anything. I knew something was wrong when he asked me to go to the loo. I knew something was wrong when he went to get a colleague. I knew something was wrong when his colleague nodded. I knew something was wrong when he said, “I don’t know how to tell you this…”

I remember thinking he looked like Robbie Coltrane. I remember thinking about the poor women sat in the waiting room. I remember thinking my two year old had never seen me screaming. I remember feeling stupid for not knowing sooner.

It’s funny what you notice when the world stops. It’s funny what you remember when your body goes cold. It’s funny what you think when your heart breaks. It’s funny how you can miss someone you’ve never met.

I want you to know you have a named decoration on our Christmas tree. I want you to know you are remembered every day. I want you to know you will be spoken about always. I want you to know you are one of my four children. I want you to know you are part of our family forever. Even though you are gone.

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On the twelfth day of Christmas

On the twelfth day of Christmas my baby gave to me… twelve gummy smiles
On the eleventh day of Christmas my baby gave to me… eleven shrieks of laughter
On the tenth day of Christmas my baby gave to me… ten minutes bouncing
On the ninth day of Christmas my baby gave to me… nine foods gone flying
On the eighth day of Christmas my baby gave to me… eight special hugs
On the seventh day of Christmas my baby gave to me… seven cooing strangers
On the sixth day of Christmas my baby gave to me… six puffy nappies
On the fifth day of Christmas my baby gave to me… five hours sleep
On the fourth day of Christmas my baby gave to me… four attempts to crawl
On the third day of Christmas my baby gave to me… three spit ups
On the second day of Christmas my baby gave to me… two tiny naps
On the first day of Christmas my baby gave to me… a perfect triangular poo

© Catastraspie, 2018

Out of place

Here we go again.  Back in the place where they torture hope.
Waiting for my numbers in some perverse kind of lottery.
Fate written in a computer print-out, a lab report, a post it.
Shrodinger’s baby, neither dead nor alive until that next scan.
How can I possibly make those 48 hours pass quicker?
In a previous life I would have filled this hole with alcohol.
Instead I’m just left with my unstoppable thoughts.
And the soft lonely splintering of my heart.

© Catastraspie, 2017.

Overestimating understanding… (or not)

A recent article in the British Psychological Society’s Research Digest got me thinking.  It’s called, “Most of us are overconfident about how much we understand things – this simple intervention can help” – and it describes a strategy to give people insight into their actual level of understanding about things.

It says that humans, in general, are prone to overestimate their own understanding of a wide variety of things, from common household objects to political policies. I have always frequently been accused of being overly modest and underconfident in my own knowledge and abilities, by parents, teachers, friends and work colleagues.  This applies to me still at work where, on paper (by level of qualification), I am an expert in my field, but I still feel like a beginner. I would rather say nothing than say something wrong, and I would rather decline something I’m not certain I can do. People who don’t know me well may think I am trying to abdicate responsibility for tasks I should be doing, or fish for compliments to stroke a fragile ego.

In academia, thinking all your successes are just down to fluke or “good luck” is often called “Imposter Syndrome” (and it’s pretty bang on for how I feel).  However, this article made me wonder whether people on the autism spectrum may have a more accurate awareness of their own knowledge in certain areas, and tend to be more realistic about (some of) their abilities. Many of my Aspie friends are incredibly hard to praise for their achievements, because they always strongly feel that they could have done better, and have not attained the level of perfection they require to feel the job was well done.

It also made me wonder whether ‘special interests’ may partly be our way of gathering what WE consider to be a sufficient amount of knowledge to thoroughly understand a topic, object or hobby, and be able to talk about it confidently to anybody without fear of getting something wrong.  After all, other people know *everything*, right…?

© Catastraspie, 2016.

Image: David Whittaker
(source: https://www.sfu.ca/dean-gradstudies/events/impostersyndrome.html)

 

 

Observations on Asperger’s at work

I’ve noticed that in my current and previous job (in admin) tasks that I have actively sought out, enjoyed and done well at, are often tasks that others are more than happy to pass on to me.  Slightly repetitive jobs, audio-transcription that means I can wear headphones and legitimately ignore everyone, staffing the office whilst people are off at meet-and-greets, filing, compiling stats etc.  It’s a double-edged sword though.  When I’m good and speedy at things people find difficult or tedious, they make assumptions about what else I can do.  It can come as a bit of a shock when I struggle with something they find simple, like selecting a photograph for a publication, introducing myself to a group of people, or judging how long it will take to do something.  Obviously I try my hardest never to spoil their illusion 😉  I guess it’s something about finding a niche and being allowed to flourish.

© Catastraspie, 2015.

A flower flourishing

The road to hell is paved with good intentions

I’m very fond of coffee.  In particular I am very fond of strong coffee from a well-known chain of coffee shops that sprinkle a chocolate bean logo on the foam.  When we go into town with my stepchildren, I consider it to be my reward to pick up a large cappuccino, either to drink in or to take home.

The particular branch we go to has a very kind and active manager who does his best to keep the traffic flowing through a narrow doorway in a busy town centre.  When I was pregnant, he used to pull me out of the queue, sit me down at a table and bring my coffee to me.  It was very kind and very much appreciated.

Now that I have a pram, he still pulls me out of the queue and helps me find a table.  In such an overwhelming environment, this is can be a lifeline, because the most anxious thought in my head when I’m heading towards a café or coffee shop, and standing in the queue, is, “Where the hell am I going to sit?”  This has become more pressing now with the pram because it will only fit in certain places without blocking a whole walkway, and quite often other groups of people send a scout ahead of the main party to find and reserve the best tables.  I suspect that the careful squirreling away of prams is more the manager’s motivation than my anxiety, but nonetheless it is still really helpful.

Today, however, it all went wrong.  I had gone ahead with two clear jobs – to pre-order the coffees and find a table, whilst my partner and children went to buy some shoes.  The moment I stepped inside the door, the manager rushed up and queue-jumped me, in front of about a dozen people who had been patiently waiting their turn.  Awkward.  Then, because I had requested a table for four, even though I was by myself at that point, he ASKED ANOTHER COUPLE TO MOVE TABLES.  He actually asked them to move, so that I, together with my giant pram, could have two tables pushed together and be waited on.

As someone who likes to blend permanently into the background, being made to feel so conspicuous and inconvenient meant I was totally mortified.  I was ready to mouth, “I’m so sorry!” to the poor couple, but they steadfastly avoided eye-contact with me, as they picked up their coats and bags, and drinks and food, and cutlery and napkins, and moved tables.  Just for me.  Me and my giant pram.  So I just sank apologetically into one of the three chairs at the tables (three, because I had not communicated that the four people didn’t include the baby).

The manager had gone off at this point, carrying the extra chair, and without explaining how I should go about ordering the coffees.  I can cope with chaotic environments like that, provided there is a single, well-marked line in which to queue, and a clear protocol to follow to get in and get out.  I queue up, I ask for my coffee, if I can’t see a table, I ask for it ‘to go’.  If a place has ambiguous or non-linear queuing, I simply leave and don’t go back.  This deviation from any kind of known system left my brain completely frozen, it wasn’t a table-service type of establishment and I wasn’t in the queue.

The baby was over-heating, so I took her out of the pram and out of her coat.  She needed changing.  Should I leave the pram at the table to show it was being used, and get into the queue holding the baby and all my stuff?  Should I carry on sitting at a table for four by myself with no drinks, and wait for my partner to arrive, even though he hates queueing in coffee shops, and was expecting to arrive with coffee ready waiting?  Should I go and change my daughter’s nappy?  She was hot and bored and fighting me to pull the pram over.  Should I ring my partner and say it’s all gone horribly wrong and I need his help?  Oh wait, he’d not got his phone with him.  How was I going to order the coffees from sat at a table?  If I’d stayed in the queue I would have been served by now.  I had two jobs – coffee and sufficient seats – and I’d failed at both.  My brain started to shut down.

The man at the next table picked this moment to start talking to me (the man on the other side, not the poor couple who were forced to move).  He was rambling on about how he’d bought his friend, who was a monk, a box of After Eights and told him to eat them or throw them away, because it was his money and they weren’t for sharing.  I tried to force a smile, between anxiously scanning the room and picking up toys and socks, but I must have looked very unfriendly.  Another man came out of the toilet and touched my baby’s hand to say hello.  Had he washed his hands?  Why did people keep talking to me?  Where were the others?  I was trying so hard not to cry.  Three attempts at waving down a member of staff and saying, “Excuse me…” in a quiet mouse voice, got me nowhere.

When my partner finally arrived, I thought I’d been rescued and signalled to him that I was about to have meltdown, but he just said crossly, “Well you wanted to come here, where am I supposed to sit and where’s the coffee?”

Time to find a new coffee shop then I suppose… this one’s too friendly.

© Catastraspie, 2015.

No, I really *really* can’t get the train…

I don’t often bother talking to people about my sensory issues and my intolerance for daily living,

After all, everybody at some point feels too hot, or too cold.  Everybody feels pain.  Most people have a food they don’t like, or a smell, or a texture.  And most people at one point have been failed by their senses and wished that they were more or less sensitive.  But what nobody can really ever know, is how someone else experiences their environment, how someone else responds to and is affected by exactly the same stimulus.

Sometimes I need to explain, but I bite my tongue and proceed with caution.  I’ve learned the hard way that some people will just hear ‘flaky’, or ‘overreacting’, or ‘awkward’, despite my best efforts to describe things.

Ok, so nobody likes it when the train is late.  And nobody likes being shoved into the armpit of another passenger.  Well imagine if disruption to your expected routine would ruin your whole day, and possibly your week?  Or if having to talk to strangers (or the possibility of having to talk to strangers, or even being in the same space as strangers) made you so stressed you might not accomplish anything else that day?

I really do want to see you, but I really can’t take the train, not today.

© Catastraspie, 2014.

You see Thomas…

 

2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 11,000 times in 2013. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

The Xmas Grinch… Asperger’s at Christmas

My partner lovingly calls me the Xmas Grinch, because each year I am seemingly reluctant to get in the spirit of things.  It got worse the Xmas I was writing up my PhD, when I had a deadline of 22 December, and I completely banned Xmas altogether until I had handed in.  That year made for some frantic shopping!  I have step-children who are all old enough to appreciate Xmas now, and they have also noted my lack of festive cheer.

It’s not because I don’t like Xmas, I really do.  I have very fond memories of Xmas growing up.  My parents made a lot of effort to make it special and I can remember putting out carrots for the reindeer, and making a Santa Trap (a string with bells on to wake me up when he came into my room – unfortunately I shared my plan with my parents and it didn’t go off for some reason…).

I think the problem is that once you get to be an adult, and Xmas is then your responsibility, it stops being so much fun.  If you think that Xmas is supposed to be all about spending time with family and friends, but you’re not the sort of person who (for whatever reason) enjoys spending lots of time in social settings, and you throw in some sensory issues, it can be challenging.  And not in a way that is easy to explain to people who really enjoy it!

Some reasons why I find Xmas difficult:

• Flashing lights everywhere
• Obligatory office Xmas parties (attending or declining can be equally difficult)
• Overcrowded shopping centres months before Xmas
• Having to pack a lot of friends and relatives into a short holiday
• Not knowing how to choose a good present for someone
• ‘Scratchy’ Xmas decorations
• Sending lots of cards but not getting many back
• Extra chores and responsibilities with no reduction in regular commitments
• Having time off work, but not really getting to do anything relaxing
• Music with jangly instruments in public spaces
• Overcrowded restaurants that require a booking and have a restricted menu
• Changes in daily and weekly routines
• Having to fake enthusiasm for my Xmas plans

To my credit, I have put up a tree this year, and a bit of tinsel, but I haven’t written any cards yet.  Luckily, I do look pretty cute in a Santa hat, so I may get away with it for another year.

© Catastraspie, 2013 (aka the Xmas Grinch)

Upside Down Xmas Tree (Photo credit: Wikipedia)

You know when… it’s time to move on.

You know when you’re so angry with someone you want to rip their face off, but you know you won’t because you never want to see them again?

You know when there are so many things to say and people to tell, that you’re not sure you can even face starting?

You know when something was so much a part of your life and your soul, that you’re not sure if you’re the same person now it’s gone?

You know when there’ve been so many lies, that you don’t know if there were ever any truths?

You know when you wish and hope more than ever that karma is true, so that the universe will resolve things for you?

You know when something was so known, that to realise that it’s unknowable is unthinkable and unbearable?

You know when you’re thinking about some things and someone says, “you look really angry”, and you think, “yeah even I noticed that”?

You know when something is so devastating, that you know you have to find a way to get over it quickly before it destroys you?

You know when you finally see the light, and it’s so bright that it melts all the scales from your eyes?

You know when you feel so many things at once, that you’re not sure if you’re feeling anything at all anymore?

You know when something is so despicable, that it absolves you of any self-blame or guilt you ever, ever had?

You know when you’re so afraid of what people will think, that you tell them you’re ok?

You know when someone is so bad for you, that they highlight all the good in your life, what you do still have, the people who make your life better, the things that are there to look forward to, and it happens at just the right time, at a poignant, life-changing time?

I guess everyone has a purpose.  It’s time to move on.

© Catastraspie, 2013.

Truth lies (Photo credit: Wikipedia)