We had a fire drill at 12.20pm today.
This was a rearranged one from last week - I had been told the original date/time and left the building 10 minutes in advance to ensure I didn't get caught in it (as I am allowed to do by our H&S officer) but when it got rearranged due to an unavoidable issue my only information was that they 'hoped to have it next Tuesday' - no confirmation, no time, and the first day back after a 4 day weekend . . . (I spent most of today thinking it was Monday, despite knowing yesterday was Easter Monday!)
So, its 12.15pm and I'm knee deep in a particularly tricky report I'm working on and quite frankly feeling fairly below par already as the weekend (being a family orientated one) was fairly tiring and I hadn't managed to get enough sleep Monday night as my brain kicked into overdrive at about midnight and didn't turn off til gone 3am!
12.20ish and the siren suddenly wails through the building.
Now, I'm actually pretty good at the first reaction part - I can compartmentalise my base reaction and squash it viciously whilst dealing with the 'getting out of the building' part but once outside all the rush of panic, sensory overload, claustrophobia (from coming down the stairs with a dozen other people) and general anxiety comes out in the form of hyperventilating and pre-meltdown behaviours emerging.
Its worth noting here that I'm incredibly lucky in working for the same organisation as my mother, and by sheer luck we were both working in the same building today so she was able to take care of me when I needed help with my recovery process.
The fact that my colleagues still don't seem to understand the implications of things like fire alarms on me is disappointing. Co-workers I encountered over the course of the afternoon seemed surprise that I was still suffering 2-3 hours after the drill, not realising that a post meltdown recovery can take hours. I actually never progressed into full meltdown as I retained a level of control during the incident but I was certainly on the very limit of my capacity for control and came very close to toppling over the edge into full blown meltdown at least twice.
It took me until nearly 8pm to feel fully 'normal' again this evening; only after eating junk food (dominos to the rescue) and taking a 2 hour nap on my sofa did I finally feel back to my baseline levels. I still don't know how I'll wake up feeling tomorrow - that will all depend on tonight's sleep quality.
The hardest part of the whole afternoon for me was trying to verbalise my pain to people - I have a multitude of different categories of headache but explaining the difference between 'dull top vice' and 'consistent mallet' to people can be interesting - especially when I'm tripping over my own tongue as exhaustion robs me of some of my fine motor control. I also lose control of some of my external 'masks' and allow my autism to show through more, become more abrupt and harsh with people and a lot more demonstrative of my displeasure - when you're in pain other people's feelings/opinions become a lot less important!
The tiredness is also a shock to a lot of people, they seem to think I can just 'shake off' a reaction and be fine 20 minutes later, they don't seem to understand that, a lot like a burn, sometimes the initial pain isn't the worst part and that the damage can still be developing over time. I'd like to see them moving at full pace when they have a brain that's occupied with self-preservation and healing.
The sad thing is that one day they will all realise what its like because a lot of what I describe my recovery process to be like is how my grandparents describe ageing - the frustration of not being able to think/move/react as quickly as before, the slipping of hand/eye coordination and motor control, the verbal mistakes, the brain 'blankness'.
Maybe one day research into Autism or brain conditions such as dementia or strokes may shed some light on how to help people like me in meltdown recovery. Until then I'll keep doing what I'm doing and try not to get myself fired in the process!
Tuesday 29 March 2016
The A Word - thoughts and feelings
Its been hard watching 'The A Word' series on BBC1 as it brings out a lot of painful memories and feelings about my own journey from ignorance to diagnosis and beyond.
I love the concept of the show and think its wonderful that the BBC commissioned a show that can help bring Autism to a wider audience, however I do worry that by nature the show is 'drama' and may end up pushing a more dramatic/extreme journey on its characters just for the shock factor.
The latest episode dealt with the concept of home schooling and the specialist vs mainstream vs alternative approach argument. Its a topic I care passionately about as someone who works within the education field; my place of work is technically a mainstream school as its not an EBD/Special school but as a PRU we do have more flexibility than standard secondary schools. (Don't get me started on academies, that's a whole separate issue!)
The main argument in all this is not necessarily about which style of education is best for the autistic child but about the social inclusion nature of childhood - if you spare the young child then pain of school/classroom due to fears of bullying, exclusions, SEND problems then unfortunately I really believe you are creating larger problems down the line.
Unless you fully intend for the child to live out their entire adult life in sheltered supported accommodation and make no form of contribution to society then you owe that child the right to learn the skills they will need for adult life. If you overly protect them as children then how do they learn the required skills to cope with post-16/18 life? There were parts of school I absolutely hated but I would not exchange those hard-earned lessons for anything now - I needed to learn that not everyone could be trusted, that not every 'friend' truly was, that I was going to fail at somethings and succeed at others and that sometimes there is no rhyme, reason, consistency or logic to life, sometimes its just not fair!
Being made to cope with the mainstream classroom allowed me to cultivate a thicker skin about Joe Public and their opinions/actions, it also allowed me to develop the coping mechanisms I use regularly now about sensory overloads - particularly in the workplace and when out at social events.
I'm not saying that mainstream is right for every child or that every autistic person is capable of living the kind of life I do, but I do feel that by restricting the child's experiences of 'normal' you are creating a stunted, unprepared adult who will not be able to cope with this crazy world we all exist in. People are more understanding now of the damage emotional neglect can do at a young age - maybe we need to be considering what long-term effects can come from not allowing children to experience the nastier sides of childhood as well as the positives.
After all, life is about balance isn't it?
I love the concept of the show and think its wonderful that the BBC commissioned a show that can help bring Autism to a wider audience, however I do worry that by nature the show is 'drama' and may end up pushing a more dramatic/extreme journey on its characters just for the shock factor.
The latest episode dealt with the concept of home schooling and the specialist vs mainstream vs alternative approach argument. Its a topic I care passionately about as someone who works within the education field; my place of work is technically a mainstream school as its not an EBD/Special school but as a PRU we do have more flexibility than standard secondary schools. (Don't get me started on academies, that's a whole separate issue!)
The main argument in all this is not necessarily about which style of education is best for the autistic child but about the social inclusion nature of childhood - if you spare the young child then pain of school/classroom due to fears of bullying, exclusions, SEND problems then unfortunately I really believe you are creating larger problems down the line.
Unless you fully intend for the child to live out their entire adult life in sheltered supported accommodation and make no form of contribution to society then you owe that child the right to learn the skills they will need for adult life. If you overly protect them as children then how do they learn the required skills to cope with post-16/18 life? There were parts of school I absolutely hated but I would not exchange those hard-earned lessons for anything now - I needed to learn that not everyone could be trusted, that not every 'friend' truly was, that I was going to fail at somethings and succeed at others and that sometimes there is no rhyme, reason, consistency or logic to life, sometimes its just not fair!
Being made to cope with the mainstream classroom allowed me to cultivate a thicker skin about Joe Public and their opinions/actions, it also allowed me to develop the coping mechanisms I use regularly now about sensory overloads - particularly in the workplace and when out at social events.
I'm not saying that mainstream is right for every child or that every autistic person is capable of living the kind of life I do, but I do feel that by restricting the child's experiences of 'normal' you are creating a stunted, unprepared adult who will not be able to cope with this crazy world we all exist in. People are more understanding now of the damage emotional neglect can do at a young age - maybe we need to be considering what long-term effects can come from not allowing children to experience the nastier sides of childhood as well as the positives.
After all, life is about balance isn't it?
Friday 18 March 2016
Rollercoaster week
What a week.
Its been Schools Autism Awareness Week for the past 5 days and I wish I could say I've seen much evidence of it but it seems to have largely passed my local area by, even my own school didn't really bother with it much except to allow me to run an afternoon/evening conference on Wednesday.
Despite the numbers of children diagnosed each year climbing and the ever increasing importance of autism awareness and reasonable adjustments being needed it still feels like a lot of school staff, employers, colleagues, general public don't really give two figs.
I worked incredibly hard to pull off our conference on Wednesday and while I'm very proud of my own achievements in that regard, I do feel somewhat let down by the attitude of my colleagues towards my event and the campaign in general - yet again autism is something that has been dismissed as 'not a priority' which disappoints me.
Its a pervading attitude that I worry is indicative of the way non-autistic people think of autism in general; its too easy for people to 'pay lip service' for a short while then go straight back to carrying on as they always had been with no regard for what we live with every minute of every day. Its not like my sensory issues come with a dial or pause button that I can utilise when it suits someone else.
They certainly wouldn't be allowed to 'get away' with 'forgetting' about the specific needs of a diabetic/nut allergy sufferer/paraplegic/blind person - in fact I'm pretty sure sometimes more effort goes into be considerate of my colleagues gluten/wheat/dairy intolerances than goes in to making sure I've got a sensory environment that wont give me an overload migraine every few hours!
Anyway, stressful week over - its time to crack open a bottle of wine, watch The Last Leg and enjoy the thought that I have nothing planned for the next 48 hours apart from watching the England team lift the Six Nations trophy!! (Lets make it a Grand Slam please boys?!)
Its been Schools Autism Awareness Week for the past 5 days and I wish I could say I've seen much evidence of it but it seems to have largely passed my local area by, even my own school didn't really bother with it much except to allow me to run an afternoon/evening conference on Wednesday.
Despite the numbers of children diagnosed each year climbing and the ever increasing importance of autism awareness and reasonable adjustments being needed it still feels like a lot of school staff, employers, colleagues, general public don't really give two figs.
I worked incredibly hard to pull off our conference on Wednesday and while I'm very proud of my own achievements in that regard, I do feel somewhat let down by the attitude of my colleagues towards my event and the campaign in general - yet again autism is something that has been dismissed as 'not a priority' which disappoints me.
Its a pervading attitude that I worry is indicative of the way non-autistic people think of autism in general; its too easy for people to 'pay lip service' for a short while then go straight back to carrying on as they always had been with no regard for what we live with every minute of every day. Its not like my sensory issues come with a dial or pause button that I can utilise when it suits someone else.
They certainly wouldn't be allowed to 'get away' with 'forgetting' about the specific needs of a diabetic/nut allergy sufferer/paraplegic/blind person - in fact I'm pretty sure sometimes more effort goes into be considerate of my colleagues gluten/wheat/dairy intolerances than goes in to making sure I've got a sensory environment that wont give me an overload migraine every few hours!
Anyway, stressful week over - its time to crack open a bottle of wine, watch The Last Leg and enjoy the thought that I have nothing planned for the next 48 hours apart from watching the England team lift the Six Nations trophy!! (Lets make it a Grand Slam please boys?!)
Tuesday 8 March 2016
Burning the candle at both ends
One of the things I find hardest in the world is to say 'no' to something I really want to do when I know I just don't have the time or energy for it.
This seems to be a growing problem for me this year; on one hand I'm incredibly lucky that I'm being offered some amazing opportunities and have so much going on in my personal and professional lives, but on the other hand I am starting to worry just how much damage I'm doing to my health . . .
I would love to be able to bottle up the excess energy I have on some days, the quiet ones where I don't interact with the wider world much or the long warm summer days that are just so peaceful and content. If I could find a way to store this calm motivation and be able to access it on the tough days where I just reach the end of my rope that would be fantastic!
Unfortunately life seems to conspire against me at the moment and seems to take great pleasure in ensuring my peak work stress matches up beautifully with my Master's deadlines! I'm in the first of two years studying an MA in Autism Studies, part-time, distance learning and its getting pretty tough going. Maintaining the self motivation to keep up with the reading and required work for assignments is starting to be a real challenge, particularly given that I'm in the middle of a massive piece of work for my manager at the moment which is taking a lot out of me each day!
Of course it probably doesn't help that I spent the Saturday just gone out all evening at a charity fundraising event; a wonderful night but very loud and social interaction heavy - I was paying for it the next day in both alcohol and sensory hangovers!
Hopefully this weekend I'll be able to catch up on sleep and processing time to get my head back to where it should be as I've got a very important event next week that I'm really excited about!!
This seems to be a growing problem for me this year; on one hand I'm incredibly lucky that I'm being offered some amazing opportunities and have so much going on in my personal and professional lives, but on the other hand I am starting to worry just how much damage I'm doing to my health . . .
I would love to be able to bottle up the excess energy I have on some days, the quiet ones where I don't interact with the wider world much or the long warm summer days that are just so peaceful and content. If I could find a way to store this calm motivation and be able to access it on the tough days where I just reach the end of my rope that would be fantastic!
Unfortunately life seems to conspire against me at the moment and seems to take great pleasure in ensuring my peak work stress matches up beautifully with my Master's deadlines! I'm in the first of two years studying an MA in Autism Studies, part-time, distance learning and its getting pretty tough going. Maintaining the self motivation to keep up with the reading and required work for assignments is starting to be a real challenge, particularly given that I'm in the middle of a massive piece of work for my manager at the moment which is taking a lot out of me each day!
Of course it probably doesn't help that I spent the Saturday just gone out all evening at a charity fundraising event; a wonderful night but very loud and social interaction heavy - I was paying for it the next day in both alcohol and sensory hangovers!
Hopefully this weekend I'll be able to catch up on sleep and processing time to get my head back to where it should be as I've got a very important event next week that I'm really excited about!!
Social interactions
My job is a bizarre mix of independent solo working within a very social-interaction based environment. This can be really quite draining sometimes and days by the time I make it home I'm so mentally drained its all I can do to function long enough to make/eat dinner.
I've had to develop a few strategies for coping with my work environment, one of the strongest ones in my armoury being my ability to fake interest in a topic being discussed around me.
I try not to utilise this too often as I don't like presenting a fake front to anyone really, but there are times I genuinely don't care about someone's son's girlfriend or the latest soap plot but I recognise that its not a situation I can politely escape from any time soon!
Over the years I've asked trusted family members and friends to let me know of the 'tells' I display when I'm starting to grow bored or irritated so I can try to keep them under wraps when need be - of course this doesn't always work and there have been many times I've utterly failed at keeping my internal thoughts from shining through my body language, still, I like to think the rates are improving!
The main thing I've found is that I have started to recognise when other 'normal' people are doing this around me as well, I wonder just how much of human interaction is made up of faked interest to conform to what we believe social expectations are?
I've had to develop a few strategies for coping with my work environment, one of the strongest ones in my armoury being my ability to fake interest in a topic being discussed around me.
I try not to utilise this too often as I don't like presenting a fake front to anyone really, but there are times I genuinely don't care about someone's son's girlfriend or the latest soap plot but I recognise that its not a situation I can politely escape from any time soon!
Over the years I've asked trusted family members and friends to let me know of the 'tells' I display when I'm starting to grow bored or irritated so I can try to keep them under wraps when need be - of course this doesn't always work and there have been many times I've utterly failed at keeping my internal thoughts from shining through my body language, still, I like to think the rates are improving!
The main thing I've found is that I have started to recognise when other 'normal' people are doing this around me as well, I wonder just how much of human interaction is made up of faked interest to conform to what we believe social expectations are?
Monday 7 March 2016
All about me!
I self-diagnosed as being Autistic at the age of 15 but didn't receive my official diagnosis of Asperger's Syndrome until I was almost 22!
I work full-time in my own office within a school and live alone in a town in Hertfordshire. I initially grew up in East London before relocating to Hertfordshire aged 8 where I stayed until leaving for university in Canterbury, Kent at 18.
My university career lasted 5 years having switched my undergraduate to a BA Social Policy after having completed a year and a half of an Astrophysics degree! I'm now half way through the first year of a part-time MA in Autism Studies as a distance learner which is a lot of work but really satisfyingly challenging.
I work full-time in my own office within a school and live alone in a town in Hertfordshire. I initially grew up in East London before relocating to Hertfordshire aged 8 where I stayed until leaving for university in Canterbury, Kent at 18.
My university career lasted 5 years having switched my undergraduate to a BA Social Policy after having completed a year and a half of an Astrophysics degree! I'm now half way through the first year of a part-time MA in Autism Studies as a distance learner which is a lot of work but really satisfyingly challenging.
Subscribe to:
Posts (Atom)