Yay

I met a new therapist the other day. When I told them I probably wouldn't look at them much they responded "that's no problem at all, don't worry about it", and followed up with "I'm a person who tends to look at people quite a lot - does that bother you as well?"

Yay to people.

And yay to having come far enough that I am quite happy when I meet new professionals to begin with "Is it OK if I take my shoes off? Also, I probably won't look at you much. If the fire alarm goes off I will be a ball in the corner, don't worry about me. I will use a fiddle tool because it helps me. I work well in writing, with direct questions and with time to prepare my thoughts." Well, I don't reel it off quite like that - that would be a little overwhelming for them, but you get the gist!

So much less spoon wastage than trying to mask all those things because I don't feel able to say them or I'm unaware of how helpful they would be. Increasingly I take a similar approach at times in other (social or work) situations where I feel comfortable to too.

Also, how exciting that I now can actually at the beginning of therapy SAY (or write) what I hope to get from it and what I want to work on etc?! Because that is OK. And is even how it's meant to work... Yikes, all that therapy previously has finally got me to the point where I can be useful in therapy 🤣

Stimmy

I'm pretty sure when I went for a gallop after a heavy therapy session this afternoon that I raised some eyebrows. 

Sometimes I have to choose between blending in and staying regulated.* I could have chosen to remain inconspicuous and probably felt stressed and dysregulated all evening, maybe with a few meltdowns in the next day or two, and some struggles to use the right coping strategies. Instead I opted for a five minute galloped perimeter of the car park. I happened upon some beautiful crocuses and exclaimed "CROCUSES!" in a loud voice (nobody was very close!). I enjoyed that so I repeated it a few times. Stopped to take some pictures of the crocuses, resumed my gallop and tiptoed along the kerb back to my car. Tiptoes are great when I'm riding high; it's like it focuses all the sensation into a small but intensive area. I also like to spread my arms as though for balancing. They join in on the gallop too. And a few jumps interspersed for good measure.

Stimming is fun but stimming is also seriously important. 

I think stimming is one of the autistic traits most misunderstood. The word is misunderstood, the actions are misunderstood and the reasons for and importance of stimming are misunderstood. 

Let's start with the word. Basically, it's what it says on the metaphorical tin: a shortening for self-stimulatory behaviour, ie repetitive actions that give sensory feedback for the person using them.  Everybody stims: maybe you're a pen-clicker or a foot-wagger or a hair-twizzler. Stims tend to happen when people are tired or anxious or bored. They regulate our stress/arousal levels.

I don't know if it's just locally or just in childcare but I have frequently heard the term stimming used as a synonym for actions that would be sexual in adults. Of course, these can be a form of stimming, but in some places this seems to be the only meaning of the word, which becomes confusing and unhelpful when trying to talk about stimming in general. Just an aside, but it's a bit of a bugbear of mine because it can be so misleading!

Autistic people often stim more frequently, for longer, and more obviously than others. Maybe because living in a world designed for people who aren't autistic means stress levels are constantly raised. Or because sensory processing is different (the same sound/taste/smell/touch/motion/other sensation registers more strongly or weakly, perhaps with an emotional response as well). Or because the person is less aware of or less concerned with what others think. Or because they are more likely to pay attention to what their body wants (or their body is more likely to demand it!). Probably a thousand reasons.

According to the NAS (National Autistic Society) website, "stimming or self-stimulatory behaviour includes arm or hand-flapping, finger-flicking, rocking, jumping, spinning or twirling, head-banging and complex body movements. It includes the repetitive use of an object, such as flicking a rubber band or twirling a piece of string, or repetitive activities involving the senses (such as repeatedly feeling a particular texture)." 

I have little stims like rubbing my top lip with my thumbnail or pressing my thumb together with each finger in turn, medium ones like spinning my Tangle, or pulling my eyebrows, and big ones like galloping. Some I only use in certain contexts and some I only need in certain contexts. Some are for when I'm calm or contemplative, some are for when I'm wound up, and some pop up in a variety of situations.

I touched on the reasons for stimming above, but they are of course infinite. Major ones include enjoyment, to gain sensory input, to reduce sensory input and to calm and soothe stress eg from unpredictability/change/sensory overload/emotional overload. There is always a reason for stimming: even if the stim is harmful in itself (eg. hand banging or excessive skin picking) it is serving an important purpose. If the stim is not harmful there is no reason to stop it just because it is deemed "strange". If it is harmful or the person wants to stop it in order to mask (masking is risky but is chosen by many people in some circumstances, or happens unwittingly), it is vital to find another way to serve the need it was fulfilling.

When people come across someone stimming in an "unusual" way - perhaps rocking, squeaking, spinning or hand flapping - many emotions may arise. Fear of the unknown, confusion, worry about whether the person is safe or what they may do next, or even simply surprise. The more we talk about it, the more I hope that the natural response will become surprise, or perhaps even happiness that people feel comfortable enough to stim freely in our presence.

I looked odd for sure. But I was regulated after that. Five minutes of weirdo for a chilled out evening, I'll take that.

*There are increasingly spaces where this choice is less necessary, and by writing this kind of thing I hope more places become like that. As I decrease my masking I am tending to find that although I may not be inconspicuous, in some places I am still accepted and respected even when I stim. In autistic online spaces stimming is celebrated and when new "stimmy" finds are discovered they are shared to help other people. Yay to this kind of thing!

Tiny Things

When everything feels bleak around me and hope is hard to see, when I feel trapped or desperate, I often find that it is some small thing of beauty that saves me. 

A tiny unnoteworthy scrap can catch my focus and become treasure that brings a window of escape to get me through the fog or darkness. Yesterday it was a leaf that I impaled (or threaded, depending on your mood...) onto a twig. So tiny and simple, yet with infinite journeys of discovery, new every moment from every angle as it is moved in the light. Shape and shadow inviting me in and away from the heaviness in my heart. And of course my many Peggies helped at other moments.

Once before, it was a holly leaf. The group facilitator seemed slightly put out that it seemed to hold more of my attention than she did, but she didn't know that an hour or two earlier it helped to keep me alive. Thankfully I have rarely ever had suicidal impulses, but in a dark moment those spiky points, the glossy shine and the smooth edges, they absorbed me enough to get back to a place of safety. I think it's only reasonable that I dwelt with them a little longer. Staring in wonder. Entranced by the power of a single leaf. Two years later I still have that leaf, nestled in my treasure basket for mindful moments when it's needed.

I don't usually talk here about my faith, but I can't let this post pass without reflecting that of course, it is not the little things that save me, it is their maker. He offers them in my moments of need and he holds me in his hand through darkness and light, and the darkness is not dark to him. But through the little things, he saves me over and over again as he has saved me once and for all and given me the only true hope that endures after all suffering.

Also note: this song "Tiny Things" by Yvonne Lyon

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!

Proud

There are many things I'm not proud of about myself; I'm great at feeling shame both in its place and when it's not appropriate. That does not exclude acknowledging the bits I'm happy about, though it's only sometimes I can do that.

Proud is something I don't want to be (connotations of boastfulness, egocentricity and rudeness?), and perhaps what I really mean is that I'm pleased about these things, and glad and grateful that they are so. But I think that proud is the word that is often used to convey those sentiments, and it acknowledges the work that I put in to make these things happen, so I'm going to stick with it for now. 

I am proud of myself for often asking for help when I need it.

I am proud of myself for managing many situations on my own (not because I feel that I must or should cope alone, but because in many situations I can).

I am proud of myself for learning the difference between those.

I am proud of myself for not obeying my head every time it tells me lies.

I am proud of myself for letting others help from mundane everyday things like "Mr Peggy please can you get me x from the supermarket on your way home" to calling or emailing for help when I can't fight my brain on my own.

I am proud of myself for letting my body grow a human.

I am proud of myself for starting to believe that it's OK to live softly, to allow more than the bare minimum I "should" have, and to live a life I enjoy.

I am proud of myself for talking about difficult things.

I am proud of myself for (mostly) looking after Baby Peggy well.

I am proud of myself for starting to vocalise my needs and wishes.

I am proud of myself for trying new things.

I am proud of myself for letting old things go.

I am proud of myself for keeping on keeping on with the things that serve me well.

I am proud of myself for learning from my experiences.

I am proud of myself for taking on challenges (ones that I want and are achievable).

I am proud of myself for making progress, even though my brain often tells me it's the wrong direction or that I shouldn't want most of these things.

I'm proud of myself for
resurrecting traditions I used
to enjoy

I'm proud of myself for using
coping skills

I am proud of myself for allowing myself to be proud. Meta.

Happy

I am happier than I have ever been.

Please don't misunderstand me. I am frequently exhausted, often irritable or grumpy, regularly overwhelmed and plenty of times just going through the motions. Our life is most definitely not Instagram-perfect even though I post some lovely stuff on social media (I don't even have Instagram - or TikTok or WhatsApp or whatever it is that the kool kidz have these days. I was firmly Generation Facebook and there I remain despite its problems, because one kind of social media is enough for me, that's what I'm used to and that's where my friends are. But anyway, I digress.).

But the fact remains that I am happier than ever. I feel as though I understand what "happy" is now. The deep joy that floods me so many times a day is inexpressible. I am constantly marvelling at this miracle of a tiny (or not so tiny...) being that grew in my tummy from almost nothing. My insides want to explode when he smiles and giggles or sucks his little fisty and snuggles his blanket, because I don't have words for how wonderful and amazing it is.

Five months in and the novelty hasn't worn off yet ;) 

I am beyond grateful for everything we have been given.

Relationship is Key to Communication

Checking for something on my GP record I came across the report from my recent psychiatrist review. I'm not normally under a psychiatrist but everyone under mental health services is offered a psychiatrist review after having a baby. This means the psychiatrist and I hadn't met before and didn't know each other other than them having read a brief summary of my medical notes.

At the time I was aware there had been some gaps in our communication but over all I had a neutral feeling about the experience - it happened and it wasn't particularly significant. 

When I read the report I realised the size of the discrepancy between what was received and my experience.

The more I think about it the more I realise how much less than optimal that appointment was. It wasn't anybody's fault, but it made what could have been a useful checkpoint into a box-ticking exercise.

I am aware that I wasn't doing my best communication on the day. My brain function was a bit compromised and my emotions were offline so I didn't even think of some of the things I could have expressed (like how the matter of what therapy I may or may not be getting has been going on for about a year and is driving me mad). 

Some things I might have wanted to say two weeks previously didn't seem important because they had faded as my priorities changed and my perspective skewed. Other things I tried to communicate but obviously didn't quite succeed at.

If I lived a few miles up the road I would have known the psychiatrist. I have practised communicating with that one. I have developed ways to tell her the most difficult of things and get round the troublesome bits of my brain. She is familiar with my idiosyncratic style of communication. And there's simply the fact that she knows me and would have been able to tell just by how I was presenting that I wasn't doing great.

I know that my situation is perhaps unusual in that I don't know my local psychiatrist and I do know the next-door one, but the point I'm getting at is the importance of relationship in communication. Especially for people whose communication is not "typical" or who appear to communicate fine but actually might not.

It wasn't anybody's fault - I could have communicated better but wasn't really in a state to do so, and the psychiatrist could have helped me more but she didn't know me so she didn't know there was anything to help with or how to help. 

But reading the report showed me that even what I thought I was communicating or tried to communicate hadn't reached its target effectively and that the gap between us was bigger than I had thought. Even things I had corrected on were still written wrongly. The group I mentioned in my previous post had a session on effective communication last week and one of the features highlighted was relationship. I've noticed it before in my post about continuity of care and here it pops up again. I think the frequency with which it appears means it's important. Not always possible, but important.