Let me process my sensory processing

content warning: this post contains discussion of mental health and has self harm mentions

I’m a sensitive guy

When I say I’m Sensitive, I really mean it, in its most literal sense. Certain noises make me flinch and squirm, certain lights make me nauseous, and food is a textural minefield. Wagon wheels (a biscuit with chocolate and marshmallow- a terrible terrible combination) must have been on offer one week in primary school because they showed up in my lunch box out of the blue. I cried every lunchtime that week at just the idea of having to eat them. Ten years later I held back tears in a Subway eating a sandwich with two different crumbly textures that just didn’t work together. It’s kind of embarrassing being a teenager crying at a sandwich in front of your new uni pals. Especially when you can’t explain why and are not even sure if an honest explanation would even improve things. Little old ladies shaking tins and handing out charity stickers were a childhood enemy; to this day I still can’t deal with stickers, sticky labels and certain types of plasters (I’ve made a lot of progress with this one). Light touch can set off a jarring metallic sharpness that runs through my whole body, it can trigger a sudden intense anger and distress; a total mood killer. There is an ingredient in certain cosmetics and toiletries that I’ve narrowed down to being in ‘berry scented’ things, it makes me feel overwhelmingly nauseous and disgusted. I once dated someone who had a raspberry lip balm, it took me a while to figure out what was going on, but whatever the underlying reason, it turns out no one wants to hear “I really like you but sometimes kissing you makes me want to vomit”.

I could go on (and kind of want to because this is pretty therapeutic) but what I’m trying to get across here is that while sensory processing issues can be unpredictable, wide-ranging, bizarre and effect every area of a person’s life they can, perhaps most importantly, be intensely emotional. I’ve noticed that when we talk about things like sensory overload or challenging behaviours being a response to sensory stimulation we have a tendency to emphasise the physical side of things. Being hypersensitive to noise is often explained as being physically painful, and I’m not saying this is untrue, but for me it’s the emotional impact of noise that causes the most pain*.

img_0474

Sensory processing and mental health

Let me give you some context; I’ve experienced problems with my mental health for at least the last ten years (before that I don’t really have much emotional memory other than particularly strong points of distress or joy) I’m a chronic depressive, I have ongoing anxiety and occasional panic attacks, I have experienced intrusive and obsessive thoughts, this effects my sleep and tiredness levels, digestion and eating. This is just a part of my life and its okay, it really is, whilst these things are inseparable from my day to day life they are also not fixed, they change and I change. But as I’ve gotten older I’ve slowly realised how intrinsic my sensory experiences are too my mental health. And it frustrates me that had I understood and the people around me acknowledged that sensory issues have an emotional impact I may have had to struggle a whole lot less.

For example when I have been in noisy environment, particularly one with many layers of noise such as a pub or busy supermarket, and move out of that into a quiet one I will immediately feel relief but then following that will often fall very quickly into a depressive and sometimes even suicidal state. In the past this has manifested in compulsive self-harm and related behaviours. It’s taken me a long time to recognise this as a pattern but now I can try to manage this in a healthier way. I can’t always prevent or avoid this state but I can understand it and take steps to look after myself. This is when I haven’t even got to the level of what I’d describe as sensory overload. When I hit that level I just stop working. My thoughts can’t organise themselves, I can’t speak or communicate properly, it can feel like I’m internally screaming, I feel helpless and all I can do if just desperately try to will myself out of existence. The comedowns from this are usually slower to happen but can last a lot longer. It’s very rare that I hit this level but I’m constantly aware that I can and the constant low-level stress of existing in an unpredictable world like this can be just as damaging as those moments when it peaks.

Lack of Control

So there’s that immediate emotional impact but there’s a more subtle long term force at work; the emotional impact of an ongoing lack of control. It begins with being a kid and feeling constantly on the verge of distress, you don’t have the communication skills to explain what’s going on or even the ability to understand it. You probably just have very strong ideas about what is okay and what you desperately need to avoid. You create games and rules to try and control these things the best you can but they never work all the time. Not only can you not control the environment around you but you also can’t control your own reaction to it. You keep trying and as you get older you develop new coping mechanisms, these have different shelf lives, some things might work for days, some for months, years. You have different options, you can become the centre of the universe as you know it, from this point you can make the most noise and draw the most attention and gain control over your environment that way. Or you can withdraw and create a smaller world that just has you in it. Either way you still can’t find sensory balance that other people just don’t seem to need to think about it. It’s a mystical superpower because no matter how hard you try you feel under attack from the world and you keep crashing. You might find it difficult to connect with others, go to new places, and do new things because you’re constantly working to keep your mind and body safe. No experience stands alone, they all happen in the context of both your memories and current emotional state. The impact this has had on me is huge and I meet so many children who seem to be experiencing something similar.

Why am I telling you all this

We all work every day to find balance between the information our senses are constantly receiving and the energy and time we put into understanding and reacting to it. For some people they never have to think about this, it more subconscious behind the scenes kind of stuff, for some it may occupy every moment and use every resource they have. I see this in children I work with who have to limit and control their every experience in order to function or children who find their way through the world using repetition and constant sensory stimulation to create predictability and safety. My experiences is neither of these but it’s also not fixed and will change.

I’ve focussed on hypersensitivity to noise in this article because it is very common amongst people with sensory issues and is perhaps the most widely acknowledged cause of sensory distress. This may be because its impact can be particularly obvious and the problematic stimulus is often easy to identify for people outside of the experience. Effective interventions can be pretty easy to achieve by either removing the noise or changing the individual’s experience of the noise through the use of headphones, white noise, ear plugs/defenders etc. However unlike something like sensitivity to different food tastes or textures where the individual can control what they eat, you can never have full control over what you hear. And this becomes more problematic the more someone goes new places, experiences new things.

I strongly believe the emotional impact of sensory issues needs to be acknowledged and explored; especially by those in caring roles such as mine. Sensory processing issues are super common in people who are autistic, have ADHD, learning disabilities and/or fit under the umbrella of neurodiversity but they are hard to understand. Because of this we often look at them in a simplified way, for example, thinking if you simply get rid of a noise that was distressing someone then that experience is over for the individual. Now there is ‘no reason’ for them to behave in a way you find challenging. We need acknowledge the broader impact of these experiences if we want to support people kindly and effectively.

Let’s let people be complicated and be willing to not always understand but to keep trying. And if I ever appear physically repulsed when you offer me food, please try not to take it too personally.

———————-

* I want to note a couple of issues at play here. Firstly the idea of pain being either physical or emotional is false. Pain is complex and I don’t believe it is ever solely physical or solely emotional and to force this separation is to oversimplify and ignore parts of an individual’s experience. Secondly with this in mind, we broadly consider physical pain to be more legitimate or important than emotional pain. Again I don’t believe in this idea and will be writing more on this issue in the future.

Play Diary: Telling Stories

I know a child who speaks in headlines and snippets from stories of mischief and chaos. He mixes characters, plot points and slapstick action with highlights from days in his life. Though it may sound like a random collage it’s never outside of a certain rationality; rules and facts of life drawn from the workings of traffic signals, YouTube videos of flash floods and the strange things adults say and do. When you talk to him in the Now, ask him to do things, give him choices, and enquire about his day he is on alert. The more you ask of him the more panic can start to creep into his voice. He’ll answer in questions or in seemingly off-shoot statements. When you talk to him in his vocabulary of stories he relaxes, he hops, flaps and smiles. When you speak his language well trust forms and slowly but joyfully you move from telling him his own stories too creating stories together. What may look to an outsider like something repetitive and rigid is actually a very niche kind of play. We’re playing with building blocks made of phrases, actions and noises. Sometimes we’re rearranging them and introducing new blocks and sometimes we’re bringing out reliable structures and colour combinations, just enjoying them for what they are.

mr-bean-21

A frequent ‘building block’ in our stories. Mr Bean sits waving from an armchair tied to the roof of an old green mini-cooper car driving alongside a green field.

 

I once created a story tent for a group of children in the corner of an open high ceilinged, drafty gym hall scattered with scooters, balls and rackets. For some children their playful spirit is like oxygen, a gas, it seamlessly grows and shrinks to fill and take over any space. For some it’s more like water, a liquid, in certain spaces it is still and unmotivated, stuck, but in the right environment it can flow effortlessly and spectacularly. Out in the hall these different kinds of children might not work together, some so much more naturally suited than others, but in this colourful cosy micro-environment different children could flourish together. Sharing and exploring this new space and its purpose created about ten magical minutes of joint play. They took turns as they told each other stories wrapped in blankets holding torches. Accompanying each other with drum rolls and scary faces. Three children sat up in a circle, one child lay at the back in the cosiest corner maybe listening and another sat to one side drawing zombies. But all experienced the space together or parallel to each other in their own way.

14031746_165318307225806_1381797089_n

The Story Tent: A montage of four photographs of a parachute den play space. The first shows the den from a distance. You can see it is built from two colourful parachutes hung together creating a high sloping ceiling. A comfy blue mat pokes out from the den. The second shows the inside. There is a pile of story and fact books on the mat. Loose pieces of fabric a piled up and a small drum hangs from the ceiling. The third shows a upright board within the den which has been covered in paper for drawing. Assorted coloured pens lie on the floor and you can see there are lots of drawings that have been done including one which says “beware of zombies!”. The fourth is a close up of a drawing which says “yard” in a blue cloud with red hand drawn underneath

In many ways these are two completely different tales of play but they both use the idea and tool of the story. Perhaps the most human product. The need to hear, read, discover and share stories seems to be universal. In play, stories have many uses, but the way I use them most is too provide structure. The idea of structure might seem to go against the ideas of play, of freedom of movement and imagination. But not every child can access that freedom with ease, especially outside their private environment. Forgetting this prevents us from recognising and allowing space for certain children’s play. For a lot of children I work with the world is a chaotic and confusing place, especially the social world which is so important in play spaces. To be able to play they must first feel safe which requires feeling able to communicate with those around them and feeling able to understand their environment enough to focus on something else. The first child I talk about above is a great example of how finding a shared communication allows for play, it not only makes him feel understood but allows him to understand me and creates the opportunity for me to be interesting. The following group of children were able to engage in a different kind of play when within an environment that made sense to all. It was the structure provided by stories that allowed for this.

The structure I’m talking about here isn’t a very fixed or elaborate one. A story has to begin somewhere, it has to be headed somewhere and there needs to be some form of conflict or point of multiple possibility. It’s simply something the child can jump off from and come back to at any point should things become confusing or overwhelming. It’s a part of feeling safe. I think we all use some kind of structure even if it’s just as a starting point, a way to transition into play. A lot of children manage this for themselves, others may need a little help or time to learn the skill for themselves. In my work I’ll often jump into play at a point where children are becoming distressed and/or someone is likely to come to harm, or when an activity is becoming to unsafe and I need to provide guidance. My way in will be bringing the play back to the original spark or idea, encouraging progressing, asking what’s next? What happens if? So this time machine, are you going backwards or forwards? Have you meddled in the past too much? You must fix it! What I’m doing is reminding them of the story, bringing them back to the narrative to help resolve conflict or find a new way forward.

supermarket-trolley-1

A time machine i often come across at work looks suspiciously like this supermarket trolley…

The act of telling a story is a way of providing a structure without boxing a child in. It provides a rhythm and familiarity that the child recognises allowing and giving permission for them to take control. This can work whether you are part of the story or simply providing the environment where it can happen. It’s a kind of ‘in-road’ to play when be able to play isn’t straightforward, for whatever reason that may be. Stories can take you anywhere.

 

Playful Communication: the joys of the ‘non-functioning’

“Communication is about our ability to share our lives with other people”            

Working in play, particularly in disability and additional needs settings, has blown open my understanding of what communication is. The quote above from therapist and author Phoebe Caldwell is, to me, is the best explanation of where I’ve landed. Most definitions of communication I see or hear focus on the imparting and receiving of information, they usually also mention speech and writing as how this can be done. I’m not suggesting these definitions are invalid or wrong, just that I feel they largely miss the point; sharing. Our communication is the reason we are able to exist alongside each other and the effectiveness of our communication is what determines how harmoniously we are able to do this. It’s not just the imparting and receiving of information that makes up communication, it’s that bit in the middle, the bit where you are existing in the same moment as another person and choosing to explore that together. That’s where the truth and joy of communication lies, not in the mechanics, in the sharing.

keith-haring

Painting by Keith Haring

Speech is so often prioritised and seen as the ultimate way of communicating, and, that’s because for many, it is. Speech seems to come fairly naturally to most and from what I understand feels natural too, easy and satisfying. But not for everyone and if you take anything from this post I hope it’s this; speech is not the only way, the best way or the most ‘human’ way to communicate. When I’m able to communicate with someone without speaking I feel at my most content, connected and understood. People often mistake quietness or lack of conversation as a lack of things to express or desire to communicate. That’s not true, it’s perhaps just that talking, to them, is the most natural way to communicate and connect with people and therefore they assume, to everyone. I can speak, often very well, but talking often feels like a means to an end rather than an end itself, it’s for that ‘functional’ bit of communicating rather than that expressive, joyful sharing bit. Writing is different for me, when I’m writing in a way that feels natural it feels much closer to drawing than speaking.

De-prioritising speech is especially important in my line of work. A lot of the kids I work with don’t speak, can’t speak or perhaps speech just isn’t a form of communication that comes natural to them. That’s not to say speech isn’t important or useful, just that it is a way of communication that has no more or less value than any other kind; the way we jump or rock, the noises we make, images we create, the faces we pull, the way we move through and change our environment, the pauses we take to breathe and be, sharing touch and laughter and any other way you can think of that allows us to express ourselves. When kids face challenges in their ability to communicate we put a lot of emphasis on teaching and enabling them to communicate functionally, in doing this we also need to remember that a person’s inability to communicate is equally our inability to understand them. Whilst we create tools and put time into giving a child a way to ask for the toilet or a snack we also need to take the time to notice and respond to all those kinds of communications a person uses as they try to share their world. Ignoring these or dismissing these as less important than that ‘functional’ communication can cause us to isolate people in our attempt to understand them.

One of the many reasons I love working in play is that the play space is an environment where different forms of communication are already valued and recognised. It’s allows for, encourages and often even priorities those non-functional or non-verbal communications. In this way it creates a beauty and authenticity I think we could all benefit from if we took the time to explore it.


Phoebe Caldwell is an author and practitioner who works with people considered to have severe communication difficulties. She uses the technique ‘intensive interaction’ and has written extensively on the subject. Here’s her website where you can find more information including information in ‘easy-read’ formats; http://www.phoebecaldwell.co.uk/       

Space Cadet 101: A Poem

My mind is a multimedia multi-dimensional collage constantly being compiled. You can dive in at any level and wander around and around

I have a theory it runs on old software that was never invented or invented but not finished or conceived but not created or something

Just something

which doesn’t quite work as it’s meant too, doesn’t quite work in a way that’s ideal. It doesn’t get the job done but it definitely gets a job done.

Or several jobs half done

Every so often it decides to finally pack up and leave. Find somewhere quieter, somewhere with softer edges where thoughts can roam without intent or purpose. But then it takes a nap and wakes up to find itself on a nearly blank page. Nearly blank because the ink has seeped through from the previous days and days.

There is so much to make sense of, process, file, re-call, catch, exhaust, exhaust, exhaust. But then there are The Moments.

Moments when I feel the world with such clarity that everything stops. I imagine my lungs, my heart, my feet; my every blood cell in suspended animation as the moment holds me steady and cradles me.

It was maybe you, or them. It was colour or water or the sudden absence of sound. It was art, or joy or perfect lines, angles and contrast.

I exhale and the relief reboots my system. New energies mix with old and the noise builds but the sensation of that last Moment becomes ink that seeps and stains.