Sensory Signals and Sensory Solutions

I have been glad this week that I am aware of my sensory world and how it interacts with my wellbeing. It is helpful that I have practised paying attention to what my sensory inclinations are telling me and how I can utilise sensory experiences as a tool. 

I have just begun some rather heavy and intense therapy work and have really noticed the impact in a sensory way - both as a signal of how I am doing and as a solution to how I am doing. 

I found this interesting because although sensory awareness tasks are often used for grounding, I didn't expect to see the effects of doing this difficult work in a sensory way. The work is cognitive and emotional: the after-effects should be too. Of course, they are, but they are also sensory, and noting that is helpful to me as it is easier for me to observe in myself than just guessing how I'm feeling. And if I were in danger of forgetting that I can use sensory experiences to calm and soothe, spotting the signs of unrest in a sensory way reminds me I can address the unease directly rather than getting caught up in cognition and emotions, which are infinitely complicated. 

It is important when you leave the sessions to leave what happens there as much as possible, to try and minimise the effect on daily life: it is even suggested to change clothes when you get home. As someone who can find transitions difficult anyway (although I do like to compartmentalise, which works in my favour here), when I came out of my session on Thursday I didn't feel ready to jump straight in the car and back into life. I felt I was in a hurry as there had been other things I was hoping to do, but I knew I needed to listen to my body. It wanted to have a little walk and calm and reorientate itself with its senses so that's what we did. I bundled Baby Peggy up and we took a slow and mindful (sensory-engaged/sensory-led) circuit of the Wander Path around the car park. I thought I had post about this path before but cannot for the life of me find the post to link to!

Cold air, bright sun, dark shade, birdsong, trees. Soft conifers to brush hands through, and their scent on your fingers after rubbing the fronds. This smell has grounded me well many times over the past two and a half years. I often used to return to the lingering remnants of sap on my fingers after sitting in my favourite pine tree in the hospital grounds. Even after washing them they would stick together, and the distinctive scent cut through whatever else my brain was trying to do.

And so I calmed and regulated myself with my senses and returned to the world when my body told me it was ready.

And then as the days went by I kept noticing that my sensory tolerance was not as accommodating as usual. I have been fine introducing solids to Baby Peggy and dealing with the mess, wet and stickiness but on Friday I did NOT want his Ready Brek on me. (And it was EVERYWHERE! Have you ever seen someone eat Ready Brek by the handful? Apparently it needs help to get from the spoon into the mouth...) On Saturday I did NOT want him touching my skin (other than hands!) and twizzling with my clothes. On Sunday I needed to use my Tangle to keep me grounded like I haven't for a long time. Which in turn became associated with times when I relied heavily on them. Which then required more grounding. My nails, which need cutting, are driving me mad. The flipsy-flopsy slappery flimmery labels on muslins and clothes are more bothersome than normal when they TOUCH me. (I know those aren't words you will have heard of, but they are my best way of expressing the yucksome experience of such a sensation.)

But the daytime contact naps that have returned with Baby Peggy having a cold mean his warm relaxed weight calms my body. The walk with the trees and the birds refreshed me perfectly. The snug cocoon of the duvet soothes my whole system. My stims like nail-rubbing regulate my general anxiety levels. And simply noticing that my tolerance is below par means I can choose to minimise stressful activities as much as possible, be kind to myself and do things that help me recover as much as possible. 

Snuggles always help!

Sensory awareness is such a useful tool as both a signal of problems and a solution to them, and because I can use it for myself, I can also use it as an aid to inform me about what other people around me might need - Baby Peggy, pupils in my work environment, even friends, family and acquaintances at times. Yay to signals and solutions!

Care

The other day I read this fantastic article about nurturing nose and face wiping. Oooh, it really got me thinking. If you ever in the run of your day find yourself wiping someone else's nose, you should read this article. If you don't, you could read it anyway - it's never a bad thing to broaden our awareness of different life experiences, and you never know when you might find yourself in a situation where the insight and understanding you gain could be useful. An aging parent or friend, a grandchild, niece or nephew, or even your own child, spouse, brother or sister can find themselves in need of physical care at any time, long term or temporarily.

The article is full of quick, easy practical bullet points to consider, yet it relays the true essence of care with brief explanations of why each aspect is important.

It is all about increasing the wellbeing of the person being cared for by supporting their understanding and anticipation of what is happening, valuing their personal preferences (eg. amount of pressure, type of movement, smells or lack of them) and autonomy, promoting their dignity, privacy, comfort and physical wellbeing. 

I keep wanting to copy and paste bits but then it's all so good I wouldn't want to miss any out! So just go and read it!

But it also got me reflecting more widely on care. Everybody will at some point in their life find themselves in a position of caring, whether this be in employment or personal life. We generally find ourselves there because we do care for that person. Because we want to make a difference and support somebody's wellbeing in whatever ways we can. 

We are also almost certain to require care at some point. We all required it as babies and children and to lesser or greater extents will be cared for throughout our lives by those closest to us or by professionals.

Can you think of any moments when someone's care has really made a difference? It's easy to pay attention to times when we have been failed or let down, but what was it in the times when you felt cared for that made the difference?

One moment I will forever remember is when I opened my eyes a slit as a particularly bad panic attack was beginning to ease, to see the support worker catching my streaming snot and saliva with a big wad of tissue. That image sticks with me. No disgust, no revulsion, no big deal, no expecting to be thanked or that I was even aware of that particular action. Just two people being with me, facilitating me to recover in the best way for me: waiting until I was ready, using minimal language, taking care of my physical needs when I couldn't and wasn't aware of them, maintaining my dignity as far as possible.

I'd love to hear of any moments of care that have stuck with you, big or tiny.

The beauty of a reasonable adjustment

Oh bless the beautiful little cotton socks of my GP surgery (and the invention of the SHOUT service that does not require verbal communication, and the people who have worked to help me accept my needs).

With the encouragement of the volunteer on the SHOUT line last night, I psyched myself up for one last phone call (feel I'm doing well on the resilience front here!), to my GP surgery, to explain my situation and ask for help.

I went in autism-focused, spiel written, and began with "I will read it out. Please don't interrupt until the end because I have autism and will get mixed up." She listened and waited until I had finished, before asking if she could continue. She said she would get a doctor to ring me back.

And here we reach the climax of the work I have achieved: instead of being a good patient (or just being overwhelmed and on autopilot) I responded that that would be a difficult problem!! And the beautiful woman uttered glorious words, the like of which have never previously been heard from the mouth of a GP receptionist (or something...): "would email be any better?"

Dear lady you, you, are the Queen. Nothing would be better than email. 

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!

"You did it"

So I did it. I completed half a term with no major work crises, no going home, no sick days. Cue congratulations and jubilation. "You're doing so well", "I'm so proud of you!"

The trouble with outwardly succeeding... functioning... completing something... is that it seems to blind others to the cost of the achievement. Once there is a visible outcome all people can see is this "winning against all the odds" . They want to buoy you up with the positivity, the "...but you did it!"s, the "well done"s and pass you on as inspiration for others who are struggling.

Positivity and celebration are valuable and important in general life, in recovery and in maintaining wellbeing, but the response above misses something vital. What was the cost of the success? Losing months worth of ground in recovery behaviour. Responding to children in unconstructive ways (what are all the potential knock-on effects of this?). Losing months worth of ground in the brain. Being absent from my home life and Mr Peggy who deserves so much more. Tipping the balance of believing in recovery back the other way. Reinforcing the belief of self and others that pushing through works. (When you use my achievement as "encouragement" for someone else struggling it may well do the opposite: make them feel useless and hopeless because they see no way to such achievements, invalidated and alone because you do not accept their current state, and worthless because the implication is that people are worth more when they achieve.)

IT DOESN'T. It is not worth it. I don't want to have to fight the recovery fight again now: I only just fought it.

Yes, I "did it" - I turned up every day and did my job more or less, but what have we really achieved? Reinforcement of every negative coping strategy that makes it even harder to crawl out of the hole that I tried so hard not to fall down again. So please don't congratulate me. Don't assume because it happened that I'm fine and better. Ask me how a long difficult term affected me. Tell me you're there no matter how many times I fall. Stay with me when I can't get up right now. Remind me that it doesn't have to be square one and that it's never too late or too early for change.

If you really want to support me ask instead of assuming, regardless of the outward appearance. But only if you're OK with whatever the answer is. When I tell you I'm sinking grab my hand just so I know you're there, and don't let go.

"I can see xxx is happening. Can you tell me about it?"
"X has happened that I thought would be difficult for you. How did it affect you?"
"I noticed xxx. What can I do to help?"

Then even if I don't have an answer at the time, or say I'm fine, follow up in a few days when I've had time to process. Even do this two or three times: it may well take that much for me to know you really mean it and for me to think it out and to feel safe enough to let you in.

It might look like winning, but I'm living the only way I know how to: winning might not always be the best. Everybody needs a helping hand and that's OK.

Having a "me"

I've been wanting to write this post for a while, but I'm not entirely certain of what I want to say, so please bear with me!

It's a post about being a "me": existing as a person or specific entity present in the world of other specific entities. This is something that most people probably take for granted most of the time, but a truth that I have often struggled to accept, or done my best to ignore, consciously or otherwise.

Even as a child I could not bear being conspicuous. Reading aloud at school was terrifying even though I was an advanced reader, being picked on to answer a question (because I NEVER volunteered) was my worst nightmare, having my music practice observed (just the presence of another person in the room, or even the house) made me angry and fearful and even the acknowledgment of my having completed some action or made some choice made me at the least uncomfortable. I sometimes find it intrusive when people use my name. When I'm really stressed out and can't have the control or invisibility I need, I have recently realised I just disappear. My body is there, doing what has to be done, but I'm not really in it - I have relinquished all choice, feeling, control, and thereby, "me", because to try and maintain a part of it or be present while lacking those things is too painful.

I always knew I was different from other people and that other people often knew this too, and being different is generally experienced as being wrong. I learnt to fit in well enough to avoid being a complete social outcast, but for many years I was very much clinging on to the perimeter of inclusion with people who were hardly the embodiment of "accepted" themselves. My goal in life was to go unnoticed.

All this is hardly news to me, and I am fairly sure that it has been a conscious goal through childhood and adulthood. When I received my diagnosis of autism I finally had a "reason" for why I was different and as I had grown older I had found a small number of friends who I truly fit in with. I had the longed-for acceptance and belonging and an explanation of why it had always been so difficult.

How wonderful to go unseen

Yet I retained this need to be invisible. As I worked through therapy recently I was aware that this was one of the functions of my mental health disorder. It was driven by a desire to be entirely insignificant, unnoticeable and to the outside world non-existent. That way you can't cause any problems, you can't be at fault or fail, and you don't hurt. Of course this is nonsense, and I did all of those things a thousand times more because of my condition, but those were the beguiling promises it made me.

Through therapy I have been trying to entertain the idea of a "me" being allowed to exist. Complete with potential for pain for others and myself and inevitable imperfection. I often find it difficult even to write or speak in the first person (even as this is written!), but I am gradually beginning to tolerate the existence of my emotions and to accept what I do or don't do, whether it is what I was aiming for or not. And then to show compassion to that "me" that has been allowed to exist. (It turns out my psychologist wasn't lying when she suggested that accepting things I don't like about myself might help them to gradually be needed less. Counterintuitive propaganda I thought, but there is definitely something in the whole acceptance, compassion, nurturing thing. I hate it!)

My battle with this idea really struck me after I read a post on social media over the New Year period. It stated that "Your wellbeing should be your number one priority. Nothing else is more important." I turned this thought around and around in my head and couldn't make sense of it. Something was wrong with it: it didn't seem to add up. I couldn't work out if it was supposed to be true or not, so I consulted Mr Peggy. He seemed to think that ultimately it probably is true. I'm still not sure (discussion welcome!), but it really made me aware that I still have a strong resistance to considering such a high value on my wellbeing even though I have changed a lot.

Then I began reading a book on "Exposure Anxiety" and my goodness, it resonates in places (I've only got to about page 30 of 300-and-something!). It was mentioned in the afterword of Donna Williams' Somebody Somewhere (second of two autobiographical accounts of Williams' life with autism and her journey from "her world" into "the world") and sounded interesting, so I popped it on my Christmas list and have begun to read avidly.

We disappear at any hint of discovery

Williams defines Exposure Anxiety as "an involuntary social-emotional self-protection response that is increasingly understood as a crippling condition affecting a high proportion of people on the autism spectrum." "Exposure anxiety makes it difficult to dare 'expressive volume' in a directly-confrontational (self-in-relation-to-other) world." "Exposure anxiety is about feeling your own existence too close up, too in your own face." (Williams, D. Exposure Anxiety, The Invisible Cage 2003, 10-11.) It produces aversion, diversion and retaliation responses and can present in many ways, just as each individual with autism is different, but can include difficulties in making decisions, fulfilling needs, being unable to perform under observation tasks which are well within an individual's skill set, speaking through other people's words (echolalia), being very controlled or controlling, and a myriad of other issues.

It has nothing to do with Exposure Therapy used to treat various mental illnesses, and I'm not sure that it is a widely-acknowledged "thing", but I think it can be a useful way of understanding aspects of behaviour in some autistic people, and the suggestions given for supporting such people certainly have merit. I see a large overlap with Pathological Demand Avoidance (PDA): though perhaps a difference in motivation, the mechanisms and presentation can be similar and helpful responses may look alike.

Perhaps I will write a separate post once I have finished the book, but I found it an interesting concept given my musings on why I find it so difficult to have a "me." (Which I still want to call a "you" because that is much less uncomfortable!)

So here's to "me." Me is a bit intermittent and only appears when she can face it, but we're seeing more of her as time goes on. Just don't tell her if you see her - she'll probably evaporate into thin air!

PS. You can probably tell her afterwards, when it's over because then it's less intense

Busy Being OK

I can't really be sitting here by a field, the wind in my hair, birds in the air, while the day is carrying on without me. And I am not there. I am supposed to be there. I have a duty to be there, and The Plan was to be there. I can't not be there. Yet the wind in my hair and the pain in my stomach tell me I am here, and so do the tears as they start to fall. It's a cruel twist that the wind helping to calm me is carrying the voices of the local school children playing outside.

There are difficult conversations to be had, and difficult, heavy decisions to be made. The magnitude of the moment is at once a crushing heaviness and a weightlessness of incomprehension. For now, all I can really understand are the wind, the flight of the birds, the movement of the clouds, the water droplets on the leaves next to me. The tractor in the field behind me turns the soil. I remember how to breathe again.

Now, with the sun on my face and the wind moving my body, I know that for the minute it is fine to be busy being OK. I will sit here for as long as I need to.

I sat next to a field for two hours. Not quite true. I sat next to a field for an hour and a half, then I did some mindful stretching next to a field for half an hour. Then I went for a walk. I crunched leaves, I followed butterflies, I laid on the earth with the sun on my face. I stopped to watch the water sparkle and the dandelion clock fly away on the wind. I made a moment for the tiny blue wildflowers, I smelt the cowpats and I felt the textures under my feet. I let myself be captivated by the dancing and flickering of tiny white leaves bright among the darker trees of the woods. I remembered me. I am very grateful to be able to do these things, no matter what else I can or can not do.

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?