The elephant in the room

Most people who know me will by now have some sort of idea that my mental health has been taking a bit of a battering recently. It's not great, my natural coping mechanisms are not healthy, and my work has been impacted, which is a line that I have always considered unacceptable to cross.

It's funny really, because I spend a reasonable amount of time promoting awareness of mental health issues and encouraging openness and conversation about mental health, yet I am still so very guarded about my own experiences. Perhaps I am not as stigma-free as I would like to think, or perhaps I just believe that I am somehow exempt from the compassion that I want others to experience!

BUT I am taking baby steps in learning how to live a better way.

I am learning to listen to myself, to act on the gut feelings I have about which situations I can manage when, and what I need to do in my unstructured time (or "down time" as those who don't frequent my work environment would say!). 

This isn't always fun or glamorous. It means letting people down (again unacceptable by my "rules"), letting myself down (cue even more Bad Brain Stuff), missing out, being boring, looking lazy or unreliable (another of my greatest fears).

As yet, admitting that I should avoid a situation doesn't even mean enjoying some quiet time to myself: it tends to mean a long battle with guilt, feeling worthless and useless, like a drain and a waste of time and space.

It is also risky: others may not agree with or understand my decision or preference. Those who know me well know that if I indicate a slight preference or wish for something to happen that is a sign that it is so enormously important to me that I have taken the risk to express it, no matter in how tiny or inconspicuous a manner. Those who don't will easily walk over the herculean effort I have made, completely invalidating it and making it even worse the next time I consider trying.

When I do succeed in listening to myself, articulating my discoveries and following through on them, and am stuck in that thought/feeling battle, I am learning to employ some "self-soothe" tools to help me to regulate and stay or become calmer. This is an approach introduced to me by my mental health team and is often used with people who experience high anxiety or distress. It may sound a bit whacky or irrelevant, but because of my awareness of the power of sensory experiences I had a fairly easy time embracing the idea (having said that, I thought I was doing it for about 9 months until I had one of those moments of revelation where suddenly something makes even more sense!). It still feels very wrong to care for myself when I feel that I have done something wrong, but I am learning that it is necessary and beneficial. It works really well as a calming toolbox for me, and with calmness comes the possibility of movement (both figuratively and literally!).

I am VERY SLOWLY learning to try and share with other people a tiny sliver of what is going on. I hate it. Every fibre of my physical being screams not to do it: it is like a complete block - a near impossibility. It is not safe at all in my mind, and fraught with risks and fears: I won't be able express what's inside, they won't understand what I am expressing, I will cause them discomfort (eg. fear, sadness, guilt), I will waste their time, they will be annoyed with me (even if they don't show it) or disregard the importance of what I am expressing, that they will think they understand, but not actually grasp it, and on and on and on. People trying to find out what is going on can make it even harder for me to share.

Occasionally by some miracle I manage to include somebody in what is happening in me (poor longsuffering Mr. Peggy and Ma Peggy and a couple of invaluable Work Peggies!). Sometimes it helps in some way. I'm hoping that through learning to talk about things with my psychologist it will gradually become more possible with other people. 

The "mental health" (or "mental illness") road is one that I am inclined to share even less than the autism road, but I think it is important to acknowledge it, even if not to go further in sharing it. Perhaps one day it will become as "OK" for me to talk about as my autism is now becoming, or perhaps not, but for now I will keep taking the little steps that appear before me which seem to be right to take.

Sensory Series Part III: Sensory Mindfulness

Following on from my previous post where I tried to describe the experience and effect of a shared sensory moment (and failed to recapture this in my re-write!), I'd like to put together my thoughts on mindfulness.

Mindfulness is currently all the rage in the mental health world, and can mean pretty much anything under the sun. Some find it life-changing; others are underwhelmed, and for others it is actively unhelpful.

The first kind of mindfulness I was introduced to is one where you are supposed to observe your thoughts as they go by, not engaging with them but acknowledging their presence and not letting yourself get distracted into thought. I didn't find it useful. Maybe I never cracked it, but it didn't do anything for me!

More recently, I have come across mindfulness described by several different people more as being present in a moment.  According to this view, I have recently come to realise that I naturally live in quite a "mindful" way.

This stormy sea was a thrilling sensory experience: the roar
and crash of the waves, the cold water on my face and hands,
the smell of the salt water and the taste of it round my lips, the
wind and rain rushing at me. I could have stayed all day,
 completely absorbed in the moment, but my companions may
 not have been so keen!

Walking along in the airport just yesterday I noticed my awareness of the rain dripping down the windows of the tunnel, the weight of my rucksack on my back, the fact that one shoe was tighter than the other. Mr Peggy, when I enquired as to the contents of his brain at that moment, was aware of the stories of all the people walking alongside us - why they were travelling, where they were going etc. We found it an interesting comparison!

A technique often suggested for people with anxiety or panic attacks to regulate or ground themselves is to name one thing they can taste, two they can smell, three they can feel, four they can hear and five they can see. I do this automatically.

The tree above my bench

I take my lunch breaks outside, where I often lie on a bench. I listen to the sounds of the birds, the river, children playing, dogs exploring, the leaves moving. I feel the breeze, the warm sun (occasionally!), the wooden bench on my back or raindrops. I smell fresh rain, cowpats, flowers. If I open my eyes I see the blue of the sky, the green of the leaves, the clouds slowly moving, the light dappled through the leaves and branches, the bright light of the sun.

It adds up really (in my head anyway!). At Jo Grace's Sensory Engagement for Mental Wellbeing training day, she commented that according to the general definition of mindfulness (similar to the one I use of being present in the moment), sensory beings are by nature always mindful. Their experience of the world is primarily sensory, and they are therefore constantly present. (She then went on to explore what mindfulness for mental wellbeing could look like for sensory beings - being completely caught up in, engaged in and delighted in a moment.) I'm not a sensory being; I am a linguistic being - I am writing this, after all - but my sensory awareness is perhaps higher than that of some linguistic beings.

I lost my track of thought there, but I think this is mainly me bringing together all my previous thoughts as I have been discovering the sensory world, and realising that my natural inclination towards sensory mindfulness could be a useful tool to mental wellbeing.

Not only this but it with the right people and in the right contexts it can be even more than that: a vehicle to connection and communication from others, which in everyday life I can find stressful or draining. This connection itself is of course a contributor to mental wellbeing.

So at this point in my exploration of sensory awareness and its effects, I think I am going to employ my discoveries by putting meaningful sensory experiences, and especially shared sensory experiences, down as a tool to boost my wellbeing and to be intentional about pursuing such opportunities.

Any thoughts?

Sensory Series Part II: Sharing the Sea

I accidentally deleted this post, so I'm afraid the new version isn't quite as compelling as the original, but I wanted to have a go at rewriting it anyway.

Last week I went to visit my family, who live near the sea. My Mum and I decided to make an impromptu visit to that wonderful place where the land and sea meet. Impressive in itself for two people who are not good at decision making!

Now, it's not a new idea to me that my Mum and I experience the world in a similar way and share a love of "real" life and being outdoors. In fact this is shared by my two sisters too. We all get a great sense of freedom, peace and life from being in nature.

Mountains are the best

People tend to baffle at the way we can spend such a time, hours sometimes, in one spot, just being. Popping out, having a quick wander and taking a photograph is enough for many people to have "done" a place, but for me it takes time to "absorb" a place to its full potential. I appreciate opportunities to go with similarly-brained people because I know they experience it more like I do. They're not going to be bored, or think I'm mad. They're not going to interfere with my experience and mine isn't going to interfere with theirs.

As my Mum and I walked along the clifftop we chatted intermittently but our comments quickly turned towards our current experience, sharing observations of the way the light changed over the sea, the sky and the hills. The way the sound of the sea changed to a low roar as the land rose between the path and the cliff edge, and how it came back in full force again afterwards (I definitely didn't run up and down the bank playing with this change...). The springy turf under our feet, the way the water fountained up in one particular place and sparkled as it sprinkled back down, the shapes and lines of the layers of rock, the cold metal of the hand rail harsh on our hands and muted through our sleeves, the great crashing of the waves. The weight of my legs as I swung on the rail.

It was real. I was real. I was connected. For me, such an experience brings a sense of completeness: wholeness and truth, and being comfortable in myself, knowing who and what I am. (This ties in with my next post, too) And as I drank it all in I realised that it wasn't just that I was connected. I appreciated the fact that my companion was not only not interfering with my experience, but that she was also experiencing that realness and connectedness, and through our mutual connection to our spot in space and time we were connected to each other.

I have discovered that my sensory world and my powerful way of experiencing life doesn't have to just be mine, but can be a way of meaningfully connecting in a fundamentally "real" and true way with others. Maybe this is the greatest gift autism has given me.

Sensory Series Part I: Sensory Experience can be Shared

I've had a blogging hiatus. No particular reason, but I haven't felt the urge to write anything for a while. It's been an interesting time in my life, blog-writing hasn't seemed to be the right response, and I have perhaps had less space for bloggy thoughts to develop.

The idea has been tapping at my brain cells a little recently though, and I thought autism awareness week would be a good opportunity to make a comeback (missed it slightly!). I've had plenty of food for thought, with some genuinely life-changing training through my job, which will probably come to you soon in some form or another!

What I want to talk about today comes from a bit of a journey of sensory awareness that I've been on recently.

I've discussed before that I don't have too many really troubling sensory problems, but over time and with discussion with people similar to me I have come to realise that my sensory world nonetheless has an enormous importance in my life.

It has the power to make things a bit more tricky (I am thankful that it doesn't generally have the power to render me drastically less functional), but more importantly it has the power to make things amazing! My sensory world (which is really just my experience of the world) can hold the key to calmness, freedom, joy and even connection to others.

Curling up in a blanket always wins!

I learnt fairly quickly after discovering my autism that I can benefit from sensory input. Touch and proprioception are the biggest ones for me: I love to be wrapped tightly in a fleecy blanket or to wear clothes that give tight, even pressure, I love to lie on the floor, I feel safest when curled in a ball, when as much of my body surface is in contact with something else as possible.

Recent training with JABADAO in "Developmental Movement Play" gave me so much insight to the importance of awareness of our bodies' sensory needs - for myself and others - that I will probably write a separate post about it (or several!). It is no exaggeration to say that my life and the lives of those I care for have been changed and will continue to change as a result of the time on this training.

This was the first time that I discovered that positive sensory experiences didn't have to just be for me, on my own. They can actually be an invaluable form of communication between people, much deeper and more fundamental than linguistic communication that people with spoken language naturally turn to.

Upside-down is good too!

Through JABADAO and my work, I also came into contact with Creative Humans, whose director Amy Manancourt not only runs this truly inclusive (a word I'm actually not fond of for many reasons, but Creative Humans really are just a group of people being and creating together) company but provides massage therapy and yoga therapy too. Amy demonstrates a profound understanding of the body and what it needs. Through practising my own movement play and visiting Amy for treatments, I have begun to attend to my body and what it needs, having a greatly beneficial effect on my wellbeing.

At my most recent treatment, Amy suggested that I attend her company's upcoming workshop for an opportunity to move my body. It didn't take much persuasion, and as I knew pretty much what to expect, my excitement overrode any anxieties I would normally have about the new situation. I was not disappointed. My anxiety tends to be primarily social- and communication-based, and I have to say that this is probably the least stressful occasion I have ever attended!

Now, movement play is all about bodies and what they need, and communicating on a fundamental level without words getting in the way or lack of words being a barrier. Words are simply not used. Even (or maybe especially?) for a wordy person like me, this is a perfectly freeing environment. At the workshop, I didn't have to negotiate anything verbally. The session begun when I arrived, and I could just slowly join the area, moving as my body wanted to.

What took me a little by surprise was how much and how easily I connected with the other dancers and participants. There was freedom to observe, to copy, to try things out, to make suggestions, to be alone or to be with others. I was strangely aware of the therapeutic effect of the environment I was in. I was truly me, and actually connecting in the most real, authentic way that I ever have. It was safe, I was real, and I was a part of things without having to pretend or "translate". I had only really experienced that maybe twice before: once during an "experiential" session on my Music Therapy module at University, and then during the JABADAO training when Penny (Penny Greenland; JABADAO founder and director) came and worked with me briefly.

For me it's novel to be calm whilst connecting

Movement play was just the beginning of my journey with sharing sensory experiences. It works with the touch, proprioception and vestibular senses, which tend to be my "best" - my "go-to feel-good" - senses. If I need to put myself right, get myself feeling right in my body, feel real, it's movement, curling up, wrapping up that do it for me. So I suppose it's a bit of a no-brainer that I felt I had found my people when I discovered this area of work.

However, starting from that point has prepared me for an expansion of awareness of my sensory world and the possibilities of connecting through it. The other training I have been on this year has been with Joanna Grace of The Sensory Projects. Jo is a sensory engagement and inclusion specialist and came to my workplace to deliver a training day on Sensory Stories. Just as with Penny from JABADAO, I could have spent days listening to Jo! Some people seem to have an almost endless well of insight, wisdom and experience to learn from, and an engaging manner of presentation to match. These are two of those people!

After the Sensory Stories day (which I would recommend to anybody working with sensory beings - people whose primary experience of the world and understanding thereof is sensory rather than linguistic - or in fact many others in the care or education sectors) I was lucky enough to be able to attend Jo's annual training day on Sensory Engagement for Mental Wellbeing. I was astounded and quite outraged to hear that although one study found 84% of their survey group of people with PMLD (profound and multiple learning disabilities) to be displaying signs of low mood/depression, most of these people have no appropriate mental health support because they are unable to access what is routinely provided. Add to this that the problems are often not recognised due to apparent lack of change in wellbeing, or changes being attributed to pre-existing conditions, and it can make for a pretty dismal state of affairs.

"You have time for me" is another of the
strategies for mental wellbeing

Thankfully people like Joanna are working to change this by finding and sharing strategies to support the mental health of sensory beings: how can we make it true for every person that "I am safe", "I can effect change", "The world is a place I can explore" etc? I'm not going to go into an of the content here, but you can find Jo on her website (see link above), Facebook, Twitter, LinkedIn etc.

My point in all this rambling is that I began to properly link together sensory input with its effect on my mental wellbeing (and to begin to observe that in others). When working with sensory beings, here is a basis for the fundamental connection that I feel so strongly through movement play: a place where people interact as equals, both providing valuable input and opinions. It doesn't only happen through movement - that is just where I found it first, and maybe the most meaningful channel for me.

When we find that point of true connection, we do wonders for the wellbeing of both parties.


P.S. This post had a sequel but I deleted it in a moment of brain malfunction, so you'll have to wait until I've re-written a less good version. Sorry!

Book recommendations

I've read some great books recently and thought I'd share so that other people can enjoy them too.

My Son's Not Rainman, by John Williams
From the perspective of a parent celebrating life with his son, and the ups and downs they have. John Williams is a comedian and I love his writing style: such an easy read, very real and down to earth, full of moments that made me crack out a smile and very poignant moments too. What I love is that John Williams really understands his son, he "gets" why he behaves certain ways and what is important to him. He doesn't sugar coat their life, but he shows the positives that onlookers might otherwise miss. A very real and relatable story of two people that I felt I could rather identify with.

Fingers in the Sparkle Jar, by Chris Packham
This is a book quite unlike any other I've read. I first listened to Chris giving a talk about his book at the Hay Festival, and was immediately drawn in. The book takes the form of a series of snapshots of Chris's life, from boyhood and the present, and magnificently expresses what it is like to be Chris. The style of writing is almost poetic, which is not a style I would usually seek out or appreciate, but the way in which it immersed me in the world through the eyes of this boy was eye-opening and wonderful. Not for the faint-hearted: there is much pain to be found, but also so much beauty.

The Life you Never Expected, by Andrew and Rachel Wilson

This too will pass

I am sad tonight. It's an evening when school staff unanimously celebrate: the last day of the summer term! We've all been awaiting it for weeks, counting down, looking forward to the peace and quiet and all the things we will do in our spare time. But I am so very sad, almost unbearably. My sadness, like my autism so often, is invisible. It's too difficult to get it out of me to share it with somebody else, so nobody will know what's going on inside. They say we have no empathy.

I will miss my children. Their parents would perhaps not approve of my calling them "my" children, but I have spent 30 hours a week with them for a year or more, and they are a huge part of my life. Most of them will not be in my class next year. I will miss them climbing on the tables, I will miss them throwing the sand, I will miss them giving me a shove and a shout when I annoy them. The twiddles of my hair, the tired cuddles, the new words, the tiny breakthroughs. Will their new classes learn quickly to understand the words that I translate so naturally? Will they realise she needs to perch up high and learns better by watching from a distance? Will they find out how much he can do with the right boundaries? How will their summers be? What will they see and hear? Will they have opportunities to have fun, explore, learn and relax?

I will miss my grown ups. All the team in my new class are new to me. When I go back to school that first day, I won't be going in to my classroom, my home, with the people who welcomed me, accepted me and became my friends. From the very beginning I felt I could be myself with them, and I willingly invested many spoons in getting to know them, allowing them to support and encourage me, and hopefully doing the same for them. The new team are very nice; all very lovely people. But will they "get" me? Will I ever be able to be comfortable? I can't explain what it feels like to anticipate those first few weeks. It's like starting a whole new job, but one that I never even applied for. Walking into a room of strangers, and having to spend all day with them. And all of the next day, and the next day, and all the days to come. When just up the corridor is a classroom full of the people who are almost like family.

These are the obvious things that I will miss over the summer and in September, but I've discovered that right now I will also miss school. I will miss the routine, the familiarity and predictability of the different things we do each day. This is the bit where I'm different from my colleagues. I've started to almost get some kind of "holiday anxiety." It's come from observing over previous holidays that I don't function as well when I'm out of routine. My sleeping pattern gets messed up: my eating pattern does the same. I get grumpy because I'm not doing as much exercise. I either see too much or not enough of the outside world. I find it very difficult to find balance.

So tonight, as everyone is out celebrating, I am scared about the coming weeks and particularly September (I started having problems last September after the holidays, and I hadn't even moved classes then; how on earth am I going to cope this time round?), and I am very sad to say goodbye to the children who have become such a big part of me, and to be separated from the people who have got me through some times when I really thought I might break this year.

And you would never know.

We like resilient people: unconscious stigma

As I've mentioned before, I'm really lucky in my workplace. When I disclosed to my employer she showed understanding by acknowledging the trust I was placing in her by telling her, she checked whether there were any ways in which work needed to be accommodating me, and she didn't make a big deal out of it. She's never treated me any differently. Not that everything's been perfect, but I've always felt accepted and safe. When I started having some difficulties a few months later she again looked for ways to accommodate, and she encouraged me to share my diagnosis with my immediate team and facilitated my doing this. She was right: it did help. My close colleagues are amazing and it's largely due to them that I haven't exploded or dissolved entirely during the last few months!

But over time I have also noticed that even though I work in such a supportive environment and one that is by nature highly aware of disabilities and differences, there remains an underlying low level of stigma, or perhaps lack of understanding. 

It was highlighted by one particular comment which stuck in my head a week or two ago. We had been discussing how a colleague had worked fantastically hard and achieved great success in a training course when home life was really hard. The throwaway comment which hit me like a ton of bricks was "we like resilient people." 

Now I'm fairly sure the comment wasn't designed to have the effect it had on me, but because the person that made it knew I had been really struggling for quite a while, the spontaneous sentiment metaphorically floored me. I really haven't been feeling particularly resilient recently! Do we not like people who are using everything they have just to keep afloat? Are non-resilient people worth less? I suppose to a business they are. If they require more time or work from leadership then that would make them a bit of a pain. Nobody likes a whinger.

It's just a bit sad and frustrating that just as I am learning to try and articulate the problems I have and ask for the help I need, I am once again reminded why I have always found that it's best to just hide it all away and get on. Don't make a fuss, don't cause a scene, don't require time or attention, and most of all, don't appear weak. We like resilient people.

I'm very tempted to put my tortoise shell back on and keep on crawling.