Jump off the world for a minute

I spent my dinner break the other day lying on the bathroom floor. I don't tell many people, but it's not an unusual or particularly negative place for me to be.

I try not to spend my whole break there too often as it's usually more beneficial to walk to the nearby gardens and lie on my bench under the trees in a few minutes of sensory mindfulness.

Occasionally I don't make it that far, and Thursday was one of those days. I just about made it to the bathroom before it all imploded and my body found the way it needed to calm itself. This time it was lying flat on my stomach on the floor with my face in a fleece, still as can be until the motion-controlled lights time out (3 minutes) and then the fan (5, I think).

By this time the crying has calmed somewhat, and the dark and the quiet help me to calm further. It's not a full-on shutdown. The sounds of the school day going by outside bring me back to my current location, and as I become able to open my eyes I observe the light reaching under the door from that other world of the corridor.

I am removed yet connected. Close, yet apart and unseen. I am safe.

What's in the Box?

Trigger warning: mild self harm reference

An excellent question! The Box, of course, is my "self-soothe box" in the language of mental health services, and my sensory box in every day conversation. I don't discuss it with that many people, but for the lucky few ( ;) ) this is familiar language as they already move in circles of sensory difference.

After my previous post, a curious reader enquired as to the contents of my box. I am very happy to share!

The great thing about the items in this box is that they can be used not only in a crisis or tricky moment, but whenever I  have a spare minute (I keep my box in my car so it's with me wherever I go) to keep regulated throughout the day as a preventative. I'm not as proactive about this as I could be as I am very busy and often in a rush, but it does make a noticeable difference when I take time out to invest in staying well regulated.

In my box:

A small jar of cinnamon. I find this smell so comforting, and it's cheap and easy to replace if it loses its effect. The reused miniature jam jar doubles up as physical/auditory input as the button can be clicked too! (Or "depressed" as some jars say. Always seems so cruel to intentionally depress a button...)

A tiny tin of coffee beans. These are great and multi-sensory too: not only do I love the smell despite hating the taste of coffee, but it sounds and feels pleasing to shake the tin back and forth. The hard cold of the metal is soothing if I hold it tightly in the palm of my hand, and the beans can be poured out and tipped from hand to hand.

A tube of bubbles. A wonderfully pleasing visual with the added benefit of controlling the breath.

A small tub of glue and spreader. This one is particularly good if I know I'm going to stay anxious for a while and need distraction within a situation where I can't access my tools. Once the glue has dried on a small area of my skin (an interesting cool, wet sensation), it can be peeled off. This is also an especially good one when I feel like hurting myself. It's a bit less "calming" than the others and can channel that urge in a less destructive manner. Please note, I don't advocate painting glue on your skin. It's probably not very good for it, but I'm just sharing something that I discovered works for me.

I had a small glitter jar, but it needs replacing and I'm not very good at making them! A great visual, with slow movement and sparkling light, and with a glass jar, there is the added weight in the hand and cool of the glass.

Putty or slime. Mr Peggy gave me mine and it has glitter in! I love it! Great for squeezing and using my hand muscles when the anxiety has an edge of frustration, or I just need some more forceful physical input. It smells good too.


mp3 player and headphones. This is loaded with music I find calming or expressive, including tracks from my JABADAO! training, which have an instant calming effect on me either because of some intrinsic value or their associations for me (or both).

A small soft toy. Comforting to hold in the hand or against my face.

Fabric soaked with bleach in a smell-tight container. This is associated with swimming for me, which I love. The movement for my body and the sensations of the water make it a great positive activity, and the smell evokes a positive feeling in me.

Fabric soaked with Tresemme hairspray. This reminds me of dance shows and exams; again an instant whiff of "good".

Elastic that I can pull if I need more intense or resistant physical input. This is just some I had in the house and I have to double it up two or three times to get the resistance I need, or I sometimes pinch a Theraband out of my dance bag, which does the trick! (see also, spiky massage balls, foam rollers, physio/yoga balls...)

Quotes. I have four or five of these: phrases people have said to me that really resonate with my mental health. I find most inspirational quotes sickening, so these are usually things people have said in passing, but have somehow hit me in a meaningful way (often it is quite like a physical hit when it happens, causing me to pause in whatever I am doing or thinking!) and managed to actually inspire me towards getting better.

A small colouring book, with pens, pencils and sharpener. I don't usually have time to use this, but it can be helpful when I do.





A notebook and pen. To remove excess thoughts from my Brain!

Recent additions: Ziploc bag of sawdust. I have recently given a home to two scrummy guinea pigs (what a wellbeing boost they are just by being there) after a ten year gap since the hamsters of my youth. Opening the woodshavings to prepare their hutch was an almost overpowering sensory memory moment and completely unexpected. Couldn't miss an opportunity to harness that: the calm of years of pet-induced wellbeing recreated by bagging some sawdust! Discovered it's not only great to smell and put the hands in, but it's pleasing to lay the bag flat and feel it squashing under the fingers too!


My Toroidz spiral. I have great friends who buy me sensory toys for my birthday! I could lose myself for hours playing with this! Mine is UV so you can use it in a dark space with a UV torch for extra amazing-ness. The combination of physical sensation - the light touch and movement with the cool metal - and visual is entrancing, and there is potential for infinite exploration of how I can affect the quality of these sensations.

And of course, a blanket! I'm becoming quite famous for my love of blankets as I learn to be more open about myself. People are beginning to get used to seeing me around with one. Wrapping myself tightly makes me feel safer, providing an even firm pressure all around my body, containing me. If I'm less anxious holding it in my hands, on my knee or against my face is a good boost to my regulation.

Bonus item! A firm favourite of mine for sensory regulation is my fleece bodywarmer. I can wear it all day at work if I need to and it helps me feel OK. It's tight enough to give me pressure round my middle, which I find very safe and calming, and it can be done up right up to my chin, so I can have a cosy safe feeling round my neck and face which really helps too. It's squashy, soft, cosy and lovely to touch, and just an ordinary everyday item of clothing that nobody would think twice about. Winner!

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