Doesn't play well with others

Been writing a lot, not about me. Clues as to the kind of week I've had. I felt a little bit hypocritical posting wonderful posts about wonderful things when the internal life has in all honesty not had an enormously pretty week. Half term hasn't sat right, I've been surviving instead of replenishing as I'm supposed to in the holidays, and I'm scared witless of what will happen when I go back to work because of that. Poor Mr Peggy has barely seen me, and when he has I haven't really been there. He doesn't know about any of this because this is the only way I can manage to tell him. Sorry, and thank you, and I love you.

Anyway... enough of putting you honestly in the picture! The Brian told me to write about being misread, and the dangers of performing too well.

Indeed, I have required every coping method under the sun, good
and bad, and as my doctor commented, a few more besides!!

It's a well-known fact that people with autism (including people who speak and people with Asperger's) have difficulties with communication. Stereotypically, verbal people with ASC tend to take things literally, don't always get jokes, misread social situations etc etc. But how often do we talk about what happens the other way round? What about expressive communication?

When people speak and have honed their copying and performing skills sufficiently to generally pass as "neurotypical", it is likely that others will forget or be unaware that they may have difficulties with expressive communication. If you're "social" enough to survive conversations and social situations then you're one of the crowd and judged by their social rules.

That can be gratifying, but I discovered today it has its hidden dangers.

My doctor's surgery very usefully has an online service, which is great for people like me. I can book appointments without the dreaded speaking machine (well, if there are any... and not with nurses or Urgent Care), I can check when my appointments are (hello last minute - or any other time -anxiety!) and I can read my notes on there too (useful for all sorts of reasons).

I read my notes after an appointment and realised I had come across as "guarded", "closed" and elements of my demeanour were noted. Now, I don't have a problem with these observations because the are entirely accurate in a way, and I imagine are clinically useful, particularly in the context of how I may present at different times.

The thing is, although they would conjure up a very accurate image of my outward appearance, the assumption about my inner state, specifically my intentions, is misleading. My motivation (albeit subconscious) in avoiding eye contact and curling my legs up is to increase my communicative capacity. Despite appearing guarded and closed, by regulating my sensory and emotional world in these ways (eye contact is stressful and exposing at the best of times, and increased touch/proprioceptive input over more of my skin is calming) I am trying to con my body and brain into thinking they are safe and that it is OK access the important and very personal information and then to try and give that to somebody else.

The long pauses and short answers are testament to the difficulty I contend with to produce even the little information I am giving. They don't mean I don't want you to know. They mean it's even more important that you do know. They mean I know it's important and that's why it's more difficult for me to get it out. I need extra time, more clear and specific questions, understanding. (Although sometimes I might not be able to tell you because you've asked... that's a different matter and you'll probably receive exceptionally clear "I don't want to talk about this" vibes, even if I do want to talk about it but can't right now because you've just asked!)

So, the observation that I am needing to feel safe and I am not communicating is absolutely valid and a useful indicator of mental state, but it is easy to misinterpret these presentations as implying a wish not to communicate instead of the very real and painful need to communicate. I would hazard a guess that this doesn't just apply to me.

The thing that got me was that I wouldn't have known I came across that way unless I had read those notes, and it makes me sad to think that people might interpret my behaviour that way. Think of the potential impact of a lifetime of that kind of misunderstanding on someone's social life. And wellbeing. If I cross my arms it's because I need some more physical feedback, not because I don't like you or don't want to talk to you.

To dare to expose something real and important about oneself - a wish, a choice, a need, a feeling - is a terrifying, monumental task (when I finally finish the book I'm reading about 'Exposure Anxiety' I will write a big old post on it!). For some context, consider that my brain tells me that a blink of the eyelids or a pressing together of two fingers may even be an immoderate display of emotion; anything more could be an unforgivable betrayal of the insides. Please don't misinterpret my efforts to battle the anxiety brought on by even contemplating such a task as outing the ins.

So when you next see some communication expressed, question its intention rather than assuming what you would naturally infer. Use your knowledge of the person and their nature. You can try asking if you're not sure. We may or may not be able to answer. Maybe we'll write a blog post about it later.

Develop Your Sensory Lexiconary!

The second of my fabulous learning opportunities came in the form of Joanna Grace's Develop Your Sensory Lexiconary day.

It was long-anticipated and my appreciation was only increased by the external and internal barriers that threatened to get in the way right up to the last minute. (I won't digress here but thanks to nice people who are kind to me. You probably have no idea it was you who made that minute or hour or day manageable.)

As expected it was a captivating day, stuffed with knowledge, insight, inspiration and food for thought. Home time arrived and I felt like we'd only just started! I wish I could have brought everyone I know who works with sensory beings. (Sensory beings are people whose primary experience and understanding of the world is sensory, as opposed to linguistic beings who experience and interpret the world through language. Think about people with profound and multiple learning disabilities or complex autism, young babies and people with later stage dementia.) And then I'd have sent them on the Sensory Stories day and the Sensory Engagement for Mental Wellbeing day. I really must not sit and extol their wonders here. Suffice to say your understanding and practice WILL be transformed if you attend.

The day in full swing! Sensory delights galore!

I'm obviously not going to recount the whole course content, but in short, Jo takes her delegates on a journey through seven of the senses, exploring the development of each and ways to choose and use resources in an engaging and meaningful way. These sensory conversations, when facilitated effectively, support both cognition and mental wellbeing: I would assume this is a goal for anyone regularly interacting with sensory beings.

I fell asleep on the bus on the way home, but not a chance during the day: I was hooked! It's not just listening (although Jo is a particularly engaging speaker) - you are constantly exploring resources, experimenting, seeing snippets of theory in action through video, being thrown tantalising tidbits of research and rabbit trails there isn't time to explore, and learning through doing and through questions and comments from other delegates (it is also a great way to discover who else is in your area and what they are doing and to steal little bits of expertise or stash away contacts for later!).

Why, thank you for asking,
yes we did retro-nasally taste Skittles!

I've been on two of Jo Grace's training days before, but I still learnt plenty and came away inspired and full of ponderings on people I spend a lot of my time with. I didn't know that biting something really hard floods the body with calm chemicals (or why). I didn't know that detail is as exciting to the brain as high contrast black and white images in early development. I didn't know that rap might be more "beneficial" than Mozart for a baby. I hadn't thought about intentionally supporting the development of subconscious senses (eg. proprioception/vestibulation) with conscious ones: pairing a clear fixed visual experience (or very localised sound source or directional stream of air) with the vestibular activity to give the brain a double whammy of easily processed input to help make sense of the world.* And you can't afford to miss the empirically evidenced effects of swearing (including different types of swearing and why they have the effects they do).

You'll recognise this one
if you've heard
me on JABADAO!

I was reminded of what we get from early developmental experiences: they are the most easily processed - what we have had most exposure to and most practice interpreting. They are like junk TV for the mind: it can just lie back, not really engage and mindlessly (as it were) enjoy/survive the moment. It's why many of us sleep in those early snapshots of developmental movement, why pink light is calming,* why a heartbeat rhythm soothes and why heavy-based scents are relaxing (they are closest to our own natural smells which we are socially conditioned to declare repulsive).

Ever since, new thoughts keep coming to mind about the people I spend my days with. My friend who needs lots of squeezes and constant proprioceptive/touch input - would it be even more calming in a heartbeat rhythm? Another friend who needs to explore everything by mouth - I can support his development by providing resources he can hold at the same time to aid his mental mapping skills to develop through his hands as well. I could go on, but I won't!

When you are taken through all the jobs your brain is doing when looking at a red ball being moved slowly from left to right (and the difference between that and a static jiggling red ball!) it is a wonder anybody learns to understand the world visually, and really highlights the monumental effort and athleticism that people approach the world with every single day. Linguistic beings take so very much for granted.

We also miss out on so much. It's well-understood that it is beneficial to spend time with people of different demographics, and here is a case in point. Experiences created with sensory beings in mind benefit everybody (I won't ramble on about why - it may well be self-explanatory, but do ask if you're not sure and I will be happy to ramble!). Sensory conversations are fun, interesting, challenging and engaging just as any other conversation: they are time spent getting to know somebody, seeing the world from their perspective, hanging out with somebody, being present.

With all its flaws and quirks, I marvelled at the human brain today.

Just a couple of current favourite sensory experiences for me ;)

Credit for all those little gems to Joanna Grace. Find her on Facebook, Twitter and LinkedIn as well as her website The Sensory Projects to find out more (she can probably point you to the right research sources, which I am less likely to be able to!) 

* And as an interesting incidental link to my previous post, Jabadao already do this when they tour with the Tig: the dancers wear black, white and red and the lighting is pink. I told you their work is based in research, and it's not just the movement stuff!

JABADAO: A Playful World

I love learning. I just find it interesting discovering new things - sometimes the "whyness" of them is fascinating, or their implications; sometimes it's just pleasing to know a thing I didn't know before. Bees spit at their hive-mates in hot weather (maybe that's what our resident loft-bees have been up to - they seem to be thriving and exceptionally noisy this year!). There was one train journey with 42 different fares from London to Birmingham. In 2016 trips on the London Underground took on average 4 times longer for wheelchair users.

But I digress. I had some lovely opportunities for learning last week and I know no better way to process than by writing a blog post, so here you go!

A Playful World Blog

Running a session for colleagues is a great excuse to reignite my Jabadao-brain and I spent a good couple of hours lost to the world, mostly in avid consumption of this delicious blog from cover to cover (as it were).

A Playful World is a mother's account of her baby daughter's developmental movement from birth to about 18 months, complete with the games they found together, gorgeous clips of video, excerpts from theory/research and insights from observation and participation. I couldn't leave it until I'd finished the lot (oops - another late night!).

If you have any interest in developmental movement and Developmental Movement Play I couldn't recommend a visit more, and if you have an hour and a half you can get through it all! It's a great demonstration of all the things we touch on when I try and introduce people to Developmental Movement Play but don't have the time or the experience or the developmentally-appropriate bodies to hand.

How do you climb if your body can't?

It uses a typically developing body which may or may not show some differences to bodies you and I may be playing with, but the principles of the play - finding games, enjoying what is happening right now, having awareness of what might be trying to happen and conversing simply as two bodies - remain the same. As you will have heard me say if you've ever been unfortunate enough to hear me on the topic of DMP, all bodies are programmed with the same desires and map for movement, from the least mobile to the most. It may be that you spend months, years or a lifetime playing in the early snapshots of developmental movement or it may be that you hurtle through (which is not a goal and can bring challenges of its own), but all bodies long to have meaningful conversation where they are, and to run and to climb.

You would never guess how much is
learnt through tummy play!

The development of our movement supports the development of our senses and cognition: not just proprioception and vestibulation, but vision and touch which are the stepping stones to writing and reading, and interoception (vital if you're ever going to toilet train or look after yourself independently, feed and water yourself at the appropriate times). Our movement development from day one to at least 12 years of age also teaches us science through experimentation and exploration, and inquistiveness. It teaches us perseverance, achievement found through playful struggle and so much more. When joined by helpful, informed, playful adults it brings us the foundations of interaction, conversation, negotiation, shared attention and the joy of sharing space, sharing achievements and sharing life.

A Playful World explores the joys and the challenges of providing for Developmental Movement Play and shows beautifully the theory in practice with ideas, inspiration and a really cute baby!

An excerpt from the first entry:

One of the things I have noticed in these early few days is how much Ruby has enjoyed opportunities to be hanging upside down, and on her tummy right from day one. 

Hanging forward over a helpful adults hand or knee is her position of choice... 

A little theory…

...On a physical level, movement that seeks to establish stability is the most basic human movement and the cornerstone for our physical development. The development of stability takes place in direct relationship with the force of gravity- the gentle and constant force that helps to build bone density and muscle strength.

Physical Development

The organisation and reproduction of movement doesn’t stem, as you might expect from the motor cortex part of the brain. Our movements are directed from the sensory cortex. When we first decide to perform an action we first recall a ‘sensory engram’ created through past repetitions of that particular movement. We remember (in sensation) what it felt like, then our motor systems reproduce the remembered sequence of sensation laid down in that engram… We need to pay equal attention to sensation as well as movement, therefore, if we want to work in depth and detail with the body as a source of learning- enabling our bodies to dance with internal sensation is every bit as important as learning to read and write… we must practice tuning into sensation as a route to using our body thinking processes.

Hopping Home Backwards

Why is this interesting to me…Holding Ruby in this way, and playing with her upside down, from day one, I was often met with ‘watch her little neck’, ‘You’ll make her sick’, ‘I wouldn’t do that, I’d drop them.’

Even though I knew ‘the theory’, I was doing the same as every new parent and muddling through, finding the ways to be with Ruby. Following her lead, and ignoring the voices around me led us to being upside down- so that is where we wallowed.

Most parents will naturally rock babies and children- which is working with the same sensations as being upside down & playing with gravity. Some babies will always indulge in going further than you might think.
When I think about it she has been upside down for the last few months so being up-right all the time must seem strange, why wouldn’t she be happy there!

The second post, Games played in the first week, gives some really early developmental play ideas, and the third, So much more than just feeding or sleeping, is a reminder of what is happening and trying to happen in the really early snapshots of development as well as a snippet of theory and some of the challenges of living in our culture. I will restrain myself from summarising the rest of the blog post by post, but do go and explore: it's a veritable treasure trove!

And for thoughts about how this translates with bodies that move differently, visit the Jabadao website or search for Jabadao on YouTube for a couple more videos of The Tig...

Sensory Self Care Saturdays

On Saturdays I roll out all the coping strategies.  Every Saturday is a self-care Saturday. They're not necessarily the same every week, but some of the current favourites (I won't list the negative ones...) are walks in the countryside, cuddles with the Piggy Peggies and painting by numbers. Today as you can tell by the blogging activity, writing has been one, as has seeing a friend.

I've written before about how sensory experiences can help with my wellbeing (here is a good place to start) and because one of the aspects about my autism that I get asked about most frequently is sensory needs, I thought I'd give a window on one of my coping tools of today.

I had a shower.

Sounds simple, but let me see if I can give you an idea of how I had a shower and what the shower did for me.

Before I had my shower I stayed in bed. Usually my self-care Saturday begins with a lie-in, followed by pilates - just the ticket (combined with Friday night yoga!) to getting back in line with myself. This was a hard week though, and Friday was difficult and included bathroom floor time for lunch, yippee. I have learnt that it is both survivable and at times beneficial to follow my body's hints that departure from routine would be wise. I cancelled pilates and stayed in bed. For ages. The weight of the duvet(s) gives wonderful proprioceptive feedback to the whole body and savouring the experience nourished me.

When I had finished duvet-ing I took the luxury of leaving my contact lenses out and showering with the light on.* I'm very short-sighted so this transforms my sensory experience: my eyes focus on the water cascading immediately before them, glistening in the light - sparklewater! (see also. sun on the sea or a river...)

I had no time limit on my shower; no deadline for leaving the house, no stressful event to prepare for later. I closed my eyes and tipped my head back, focusing on the sensation as the water woke my scalp and face. Nice and warm - bed temperature eases the transition on the body... calm. Tappy tappy touch dancing on my skin.

I have my phone set to play "My Mix" on YouTube - no stress of deciding what playlist I want to listen to, no decision making, but music that I like because it's made from my playlists.

I turn around to join the sparklewater again and become absorbed in the way the shadows of the water drops play on the white bathtub if I shake my hands and move my fingers.

Eventually I move on to wash my hair and myself, with familiar scents and an unchanging routine. When I start to overheat I know I've been there long enough and I share a last few moments with the sparklewater before I say goodbye. My shower has a five-second delay on its "stop" button - this Godsend makes the transition more bearable. And I know I can come again soon. I am so very grateful that I am privileged enough to be able to access this form of self care: physically, culturally, financially.

Photos just don't compare.
Go and try it for yourself if you can.

*It's funny, because it's there every day, the sparklewater, but it's a special treat to see it. My contacts give me so much (I cannot focus beyond about 20cm without them and I have much better vision than with glasses, not to mention they are so much simpler, especially in my job!) but in entering the world of the distance-seers I lose the beauty of the morning sparklewater. On weekdays I also shower with the light off because dimmer light is more calming for me and our bathroom fan makes an unholy racket too, and I need to retain all the calmness I can on schooldays!

Stigma: Mental Health Awareness Week 2019

I thought I'd address stigma as that is obviously one of the main aims of Mental Health Awareness Week: to get people talking and reduce stigma, to remind people that "people with a mental health problem" are just people (most of us will experience some aspect of trouble with our mental health at some point in our life), to help reduce feelings of shame and isolation.

As I pointed out earlier, I write about mental health on here because it is something that closely ties in with my autism and a large part of my life recently has been managing these. I consider myself pretty understanding of issues concerned with mental health, I try and educate myself on how different aspects affect different people, I try and be a good friend. I will happily fight for other people's needs and increasingly voice my own on occasion and I will shout (metaphorically) about whatever is needed to reduce stigma.

So what should I post as a special for Mental Health Awareness Week? It would be appropriate to write a big reveal of my whole mental health story, of a condition that desperately needs people to do just that. But it turns out I, the inclusive, mental-health-aware person, have too much stigma. I still have too much shame to tell the world the less palatable truth about the ins and outs of trying to live with and recover from my particular brand of Brian. It's fine if it's someone else, but the fact that I can't own up to my own truth displays a level of stigma I don't care to be associated with.

Because I like to make people happy and to reinforce to myself the positive aspects of life and recovery I tend to make sure I end on a positive when I'm writing: the positive coping strategies I've used, the fact that it's OK to have difficult times, the silver lining to the cloud. This is a good thing, and it's important to highlight hope because it saves us, but it might leave you with a false image of me as a super-well-adjusted person winning at living with and recovering from mental health problems. I still have shame. I still cry on bathroom floors. I still use bad coping mechanisms. I still hide, so this is a bit of a non-post really.

But in usual style I will come round to the positive at the end. My new GP gave me a beautiful nugget this week. She is fab and seems intent on supporting me as I carry on post-discharge. She asked about things I do to help when I'm having a difficult time and I ended up explaining as I have to many people before "I am the queen of positive coping strategies. I have them coming out of my ears (metaphorically). And yet we're still here".

And where would you be if you didn't have them?

Hm, touché my friend.

(I'm pretty sure others have pointed this out before - my favourite Welsh Peggy for certain! - but for some reason it hit the spot at that moment). It still leaves me wondering where to go when I've used every tool in the book and still need the oh-so-effective maladaptive strategies, but at least I have strategies to get me this far. And re. my last post, just because I'm where I am right now doesn't mean I will be forever.

Maybe I'll tell my story another year.