29th September

This night a year ago was the last night I spent in my own bed for nearly eight long months. I was trapped, terrified and almost hopeless. The following day I ended up in hospital.

This year I have just got back from ballet class where the familiar syllabus is like an old friend, constant through everything that changes. I have jumped and turned and been en pointe. Last year I could barely walk a few steps. 

Tomorrow I will go to work, to my wonderful new class of little people with huge personalities. I'm enjoying them so much, perhaps all the more because I only got two weeks of last year. 

It should be as simple as that. I was barely able to stand for a minute or two, to speak more than a couple of words together or to concentrate on anything for more than a few minutes. Now I can walk in the countryside, dance, drive my car, fly on zip lines, go to the shops, relax on my own sofa at home with Mr Peggy, going where I want to when I want to and doing what I want to. It should be that simple. 

In the hospital I found hope and fear in equal measure. To begin with, enormous relief that my ordeal was over, everything stopped, no more fighting. Peace at last. Hope for freedom and life to return. The first night's sleep I'd had in weeks. But the darkness didn't leave; it wasn't that simple. 

There was pain, fear of the immediate reality and of the future. Gradual realisation that this was going to be the long haul. So many experiences that overwhelmed in so many different ways, which I still haven't processed now and don't know how to (sometimes I think I have more problems now than I did before!!). 

The struggle continues daily, well multiple times daily. It rarely leaves my thoughts. I don't always win. Emotions and memories party in my brain and body uninvited and I struggle to cling to what other people tell me is the truth. 

But today and tomorrow I'm trying to focus on what I can do that I couldn't do before. This time last year I was deluded enough to think I could be back to school by half term. I was off for the rest of the year. This year I will be there tomorrow and on the first of October, and through November and December and 2021, full of life. 

A different path

A year ago I was a good way along a treacherous path, with the danger increasing daily. I was terrified on that path in that dark place but all other routes had long since vanished beyond my ever-diminishing sight. Soon the fear faded into numbness and the darkness seemed normal, the path familiar. Awareness shrank and life became a one-track survival challenge from one moment to the next. 

And in another way I was blissfully unaware of the depth of the danger I was in. I knew I didn't like it and I just wanted it to be over, but to be honest, judging by other people's accounts I still don't quite accept how bad things really got. 

A year later. So many wonderful wonderful people have given me so very much. The help I received when I continued (and continue) to make poor choices feels too much; undeserved. I am so grateful to each person for each moment of care - I can't put into words what those moments are and how precious they are and how each one becomes a stone in the new path I'm trying to build that leads out of this place.

A year later. Why do I want so badly to run right back to the darkest place? Why does the thing that brings me only danger and that wants to steal my life feel like a place of safety? Why am I constantly drawn there, wanting to visit, to stay a while, hm maybe I'd like to live here.

Everything in me compels me to be there. I need to be there. There isn't another choice - that is where I should be. Yet I have to walk away. Each step is fear and horror, where it should be hope, joy and freedom. I've had so much support, so much sense, so much time, I'm sorry I can't see what you all see, but I hope the fact that I'm still trying to walk away shows that I trust you. That each time I find myself heading back towards the darkness I ask for help, I turn around and I try again despite everything in me screaming at me that I'm destroying myself and leaving behind everything good and safe. I hope that shows the value I place in the people who help me. I'm trying to trust you that this path I'm building will be worth the pain. 

Why am I a body-listener?

In my previous post I found myself playing the piano. It made me reflect on how thankful I am for the skills that I have been taught throughout my life that bring themselves into play to try and help me. Playing music, listening to music, letting my body move in the ways it wants and needs to, seeking out dark and quiet space alone. Most of these skills were taught to me in a different context from how they help me at the moment, but they repay my investment (and that of those who teach/taught me or enabled my learning in different ways) in them over and over. I'm enormously grateful for my ability to listen in to what it is that might help in any moment - in fact it more often happens quite subconsciously that I find a compulsion towards an activity which will help to regulate me.

I began to consider this inner awareness and its origins. Is it innate in me or have I learnt it? Currently reading about Developmental Movement Play (and recently listening to a podcast sent me by a dear friend) I am reminded that that our culture as a whole tends to be painfully disembodied, with the exception of a few disciplines that have a clear focus on inhabiting the body such as yoga. Why am I less so? Is it because I have always been active? Perhaps yes, and perhaps no. The activities I took part in as a child, teenager and young adult demanded mastery of the body. This involves high-definition awareness of what the body is doing but leaves little space for asking it what it would like to be doing. 

Is it because I have spent time practising yoga and tai chi? Perhaps this has helped, but I have a feeling I did not quite grasp this aspect of yoga until after I had discovered developmental movement play. Was that the magic moment? It was magical in many ways, but the approach of JABADAO (search my blog for more posts about JABADAO) and body-listening, body-communication etc seemed to come quite naturally to me. It was as if I had found what I was made for, how to really be. I noted that it wasn't like this for everybody.

So that stuff was and is instrumental in bringing the whole concept to my thinking brain (as opposed to my body-brain wherein it had been confined previously) and helping me to utilise and develop the skills to be consciously aware of what my body and brain need - to stop and ask them, and to follow their suggestions, but I don't think it can take all the credit. I think what it did was to begin to free what was hidden in there all along, squashed somewhat by trying to fit in to our society, but not squashed as much as most people! Because my brain is more focused on the sensory world than some brains, I find it easier to access these things, or harder to ignore them. So sometimes I love autism!

The body speaks if we care to listen

I'm super dysregulated today. 

My first clue was that I was standing on my tiptoes waiting for my tai chi class to start. I actually thought I was feeling a little calmer this morning because our shower has been fixed so my morning routine is finally back to normal (see the executive function post to imagine the difficulties with figuring out how to wash yourself and start your day when your routine is not available!). But when Instructor Peggy (he's definitely part of my network of supportive Peggies!) joked about how tall I was I began to pay attention to my body and discover unease there, outed by my body's attempts to regulate itself. I noted that even though attention had been drawn to me, my feet really wanted to stay with the extra pressure of being on tiptoe. I was anxious. 

Later in the day my body has led me to playing the piano, reading, painting, and rolling on the floor. I've noticed it hasn't wanted to do any of them for very long, whereas often it will stay with one occupation all morning or afternoon. It's feeling unsettled, which makes a lot of sense given the amount of changes and unpredictability and stressful situations coming up in the next week. Each activity has helped a little in the moment, but I don't settle to anything. Now it has sent me blogging, instructing me to delay the supermarket trip (it felt a supermarket meltdown coming on - I wonder whether it will after I've done this). It's trying to help me out - sometimes my body knows better than my brain. 

Yesterday it popped me in the nook for most of the day which was quite appropriate but clearly today is different. The anxiety is mounting and so the body is looking for the best way to stay regulated. Let's see what it brings me to over the next few days!

I didn't have a supermarket meltdown. I took my time, used my familiar soundtrack and navigated the shop without drama. I have enough experience by now to know that my body usually guides me soundly. Now maybe I should listen to its guidance on emotions too... I reject them but then they just escape or leak out uninvited - tears in that restorative yoga pose, dreams about having meltdowns, they're all messages telling me something needs attention.

Both of these things can be true (dialectics)

 Sooo, here is a thing that has popped up in an awful lot of conversations this week. Different people, different scenarios, and not just me going on about it special-interest-style - it's emerged spontaneously in conversation, brought up by either person. Although true to character it is often me that gets excited and starts yelling about it when I notice we've ended up there again. I do love making links and identifying things: it helps the world connect together and make sense.

I will always remember a particular nurse who was oft heard to remind patients "both of these things can be true." I think of her every time I exclaim it mid-conversation, and I will never forget the mind-blowing effect it had on me the first time I heard it. It's a devastatingly simple concept, but was a whole new world to me, two things being true at once, the world not being binary black and white boxes. Transformational!

When I am anxious about an upcoming event I get asked, "will you even enjoy it at all"? or "is it worth putting yourself through this?" and I find myself trying to explain the conundrum of how it's OK to go because although I am and will be anxious, I will have fun too. Then I realise it's really simple: it's that thing again! Both of these things can be true. Although anxiety may at a first glance appear to preclude positive emotions, in truth I can have anxiety and have enjoyment at the same time. I have anxiety most of the time so it's pretty lucky that's true or my life would be incredibly dark and dismal. Two statements that seem completely at odds with one another may actually both be true.

The principle works for a whole host of scenarios. 

A teenager may want independence and want the support and care of their parents

A parent may love their child and impose consequences for their behaviour

You may have an argument with someone and still be friends with them

You may be terrified of something and you may want (or need) to do it anyway

In some cases we may only even see one of the truths - certainly only give one any weight. Because I have a one-track mind, I forget that more than one thing can happen at once. I note the uppermost thought or emotion occurring in a time of distress and take that to be the truth. 

Because our brains are programmed to keep us safe they are particularly alert to danger and keen to warn us of potential threats (remember if our brain perceives a threat as real it acts as though it is, whether that makes logical sense or not), so we are likely to form speedy assessments in situations where there is any possibility of "danger" (including danger of being rejected or overwhelmed). This can give us a tendency to think in a very black and white way (particularly characteristic of autistic people anyway), to jump to conclusions and mind read what we assume others "must" be thinking. And it means that the uppermost thought or emotion tends to be the most threatening one.

If I have a disagreement with somebody, in my head I think they think I am wrong, which in the immediate instance, they probably do. The trouble is, this becomes my truth. I think that that then defines their opinion of me as a person. I forget the quite possibly simultaneously-occurring truth that they like me and/or respect my opinions.

I make a mistake and I forget that alongside "I got it wrong" can exist the truths "I meant well," "I tried my hardest," "I am loved regardless."

So I'm glad this has come up repeatedly in my conversations because it's so easy to forget, but it's one of the many wonders of DBT!

Scenarios paraphrased from: https://www.mindsoother.com/blog/how-to-think-and-act-dialectically

Further brief introduction at https://www.sheppardpratt.org/news-views/story/dbt-101-what-does-dialectical-even-mean/

The Oldways

 If I wasn't already known as the village crazy lady then walking barefoot down the street stroking my hand with the fronds of a fabulous piece of reed should have done it!

This walk was long overdue and as soon as I left the house my feet let me know they wanted to be on the ground, not the flip flops I had put them in. I ignored them for the duration of the appointment I had gone out for, but as soon as it was over I had to let them be free. 

My feet found so many wonderful treats and treasures for me and led me to where I needed to be. 

Long grass, short grass, cool grass, warm grass. Hot hard tarmac. Smooth paving. Earth baked dry and earth with a spring. Soft dirt, spiky stones. Bark that wakes up each millimetre of forgotten sole.

Insects buzzing, breeze in the trees, pigeons beating the air with their wings. Doves cooing, tiny popping as water evaporates under the sun from the drying stream, and the odd drip from the grasses growing into the water. A distant pheasant. Butterflies dancing. Songbirds chattering. And me, finally still. Sitting, silent. Breeze stroking my skin in the warm shadow. Bare feet, breathing the life around me, being part of this place in this moment.

How to brush your teeth: What on earth is executive functioning?

I promised a post on executive function a while ago. Ironically it has been delayed because it took me so long to collect my thoughts and work out how to put them into words!

Executive function is a funny phrase that doesn't really explain itself very well. I think it sounds like a very vague term for nothing in particular, or that top boss who's technically in charge of everything but doesn't actually do anything in particular. Well, in some ways it is a bit like that! Executive function is your brain's organising and ordering of its own self. 

It's what helps you work out what you need to do, when you need to do it, and how to do it, from something as "simple" as brushing your teeth (do it after your last meal, before you go to bed - perhaps it has a more precise spot in your evening (and morning...) routine which we'll touch on later - pick up toothbrush in one hand, toothpaste in the other, open toothpaste tube, squeeze a pea-sized blob onto toothbrush, close toothpaste tube and put it down, turn tap on, wet toothbrush under tap, you get the idea...) to complex tasks like driving, mathematics or writing a book. The unsung hero without which we would not order any task - ever tried to make tea without boiling the kettle? - or switch between tasks, or work towards any goal. Sequencing, memory, decision making, paying attention, starting/finishing/ordering tasks, flexibility (of thinking, rather than body...), self control, emotional regulation and problem solving are all the jurisdiction of executive function. 

Some brains, for example those described as autistic or having ADHD, have a bit of a different operating system. Life would be boring if all computers ran Windows, after all. These operating systems may prefer to do only one thing at a time rather than running several programmes simultaneously. Perhaps they need each task to finish before the next can begin. They may have a favourite programme that runs more easily than others or likes to take precedence over whatever else is trying to run. 

This can often be fantastic - when only one programme is running it may run at great efficiency and is highly accurate. It gives a satisfying and detailed picture to the viewer. Jobs are done thoroughly and to a high specification and often enjoyed. 

However, in a world that more often runs a different operating system which expects more flexibility and variation and prioritises specific tasks that are valued by society, this can cause difficulties for any of the parties involved. If you're expecting to interact with one operating system it's a shock to be met with another. Many people only know how to work with one operating system and find it difficult to navigate others. 

Autistic operating systems can require a significant amount more preparation to switch tasks. They may evaluate the relative urgency of tasks differently from others or evaluate all as equal (brain explodes here because there is no deciding factor for which to begin first). They may not have filters for incoming data (sensory or social or emotional input), which can derail the task in hand. If a task is derailed they may not have the instructions pre-programmed to resume mid-task and may need to restart from factory settings. They may not have reliable filters identifying which information is relevant, or most relevant, and therefore flounder in decision making tasks as the options, pros and cons are overwhelming. 

What a lot of metaphor. What does this mean in my day to day in my life? 

It means that I rely heavily on routines to compensate for my differences in processing. I mostly have pretty good ways of getting by, until something interrupts my compensation strategies and I realise just how difficult my system finds some things when it's not fore-armed to deal with them. 

A beautiful example: on my first few days at home after living in hospital for months, it took me forever to get myself into bed. I would stand in the bathroom looking blankly around me wondering what I needed to do, or I would pick up the wrong items for the task in hand, or get into bed and realise I still had my contact lenses in. 

In my then familiar environment of my bedroom on the ward, everything was where it should be, each task happened in the same order each night and bedtime was smoothly accomplished in a few minutes. Take away that muscle memory routine and I had no idea how to go to bed! I knew the title of what needed to happen: "go to bed", but had lost the step by step instructions and didn't know how to to it. Imagine having to think through every step of the toothpaste scenario described earlier. And then remember to do the same for changing into pyjamas, using the toilet and removing contact lenses. It's exhausting. A window into what it's like when autistic people have their routines removed or interrupted. Exhaustion brings a reduction in coping resources and executive function, and you can see how the spiral spirals. 

How many plates?!

Only yesterday I had a spectacular moment of abandonment by my executive functioning system. I had cooked the tea and discussed with Mr Peggy and a socially distanced Ma Peggy how I was going to portion it to find out how much raw ingredient I need to make the right sized cooked portion. When it came to the time, I just couldn't figure out how to organise myself to portion up three platefuls of food and find out how many portions were left. Did I need to get out about 8 plates to portion every portion out? Where would I put all those plates? That would make a lot of washing up. But if I put all the spares in one place how will I know how many there are? Perhaps I should measure one portion at a time and then put them back into a communal tub, thus using only one plate? If I portioned them all up straight away the ones to eat now might go cold. And a thousand other confusing thoughts and questions. Luckily I recognised the signs of overload and asked the Peggies what to do! I often end up taking a lot longer to do tasks or doing them in a way that seems overly complicated or inefficient to others, because my brain has found a way to do it that works. I may stick with this method if I do that task again in future, because I have done it before. It takes a lot of time and thought for me to reprogram to a new way of doing something even if it is simpler.

Routines help me through every part of my day, usually subconsciously. Leaving the house, getting up, arriving somewhere. Most of my belongings have a place, so I know where to find them. It takes a lot of brain power to look for things (start with places it might logically be, but then imagine where somebody else might put it in their logic, but that may not seem at all logical so then you are looking literally everywhere!), and the looking interrupts the task, so once the item is found the task may have to begin again. So I like to be able to rely on them being where I expect them to be. These little routines and habits are not exclusive to people with executive function differences (how many people wash themselves in the same order every time they shower or get irritable when their keys are not where they left them?), but people like me tend to have more of them and rely more heavily on them. It distresses me when things are not where they should be and when things do not happen as they should happen or I am expecting them to happen because I have to reset my whole brain. 

I also use longer-term routines to help me make sense of the world and the passage of time, and to help me know what to expect - predictability and familiarity, in case you hadn't yet noted, help the busy brain. I always to the washing on a Saturday. I clean out the guinea pigs on a Sunday. I do the weekly shop on a Friday afternoon. I go to certain classes (eg. yoga) on certain days. I feel more like I understand and can predict the world this way, and then I can relax a little. When these weekly rhythm routines are disturbed I have to spend a lot of energy on constantly notifying to myself what day it is, when the next "normal" thing will happen to try and get me back on track. 

I use lists nearly all the time, especially lists of "to do" and "to get." Otherwise the items zap around in my head demanding attention, until the moment when I needed to remember, by which time they have toddled off for a brief nap only to resurface when it's too late! When preparing for a particularly busy day I make a chronological list of each step I need to accomplish, so I'm not grappling with trying to remember, prioritise and sequence it as I go along (this is basically a version of  a visual timetable; a tool used throughout the special needs school where I work).

I have to reply to messages as soon as I open them or I won't remember! If there is a pending communication, woe betide if it doesn't make it to my to do list (please tell me if I owe you a communication!!).

Little familiarities that can be used across contexts can be helpful. Using my own equipment (eg. pen/notebook/blanket/toiletries/car/cutlery etc etc) and doing things my own way even in a new situation can help. If I have a "soap bag" evening routine for travelling, this night mean I can more easily get to bed in a hotel or friend's house even though the environment is not familiar, because the soap bag, its contents and the routine I follow with them are the same, which reduces the newness and therefore processing involved the task.

Throughout childhood and my teenage years I would have minor shutdowns from getting too hungry and then needing to make a decision. Decision making is still a major trigger for shutdown: my brain just can't process and prioritise all the variables but can't produce an answer unless it has a deciding factor, so it crashes, much like a computer. 

I think I've spoken a lot elsewhere about emotional regulation and some of my problems and helpful tools in this area, so I won't go into that now, but please do ask if you'd like to know about that.

Factors such as tiredness, emotional dysregulation, sensory dysregulation and non-availability of routines (including unprectictable events, changes to plans or unfamiliarity in some aspect of my situation) can affect my executive functioning levels and therefore my ability to a) complete tasks at all, b) do it in a timely or effective fashion, c) prioritise usefully or d) make decisions. 

Everybody has these experiences from time to time, perhaps when overtired or stressed - we all struggle to make "wise" choices when in these states and perhaps spend more or drink more than we would otherwise. We forget what was on the shopping list, or to pick up the shopping list. We lose one of the tasks when multitasking. You need to stop, retrace, recoup, and continue. That is a laspe in your executive function - just imagine every task being like that every day, and finding it much more difficult to get back on track afterwards!