More Letters

Today is a wading-through-metaphorical-treacle day. A zero executive function day. A day where I keep finding myself motionless, staring at the items on the supermarket shelves and the world seems distant. 

Only the items on the list are bought, and the ones that left any room for interpretation are left unbought, because I don't have the capacity to make decisions about what to buy. The shopping has been brought into the house, but not yet put away because I just don't have the spoons. Having dealt with the full-change-of-clothes nappy incident at the beginning of the shopping trip, we also had to make another toilet visit before home time to deal with my anxiety digestion. 

It's the end of what I'm affectionately calling Stressy Season - the longest of my calendar-based trauma triggers - which spans six weeks through September and October. This year I finally have a name for all these things that happen to my body and brain when it is reminded of certain past events.

PTSD is not just the curled-in-a-ball-on-the-floor-crying-rocking-unable-to-speak-occasionally-with-screams-coming-out-or-hurting-of-self panic attack after the fire alarm. It's not being able to concentrate on what you're doing, it's dread when you look out of the window, it's feeling irritable at the slightest thing, it's going to lengths to avoid places and things that make you remember, it's feeling sick all the time and wild bowels, and so much more.

Dem autumn leaves are well threatening...

Autistic people are more likely to get PTSD and are less likely to have it identified correctly. We are both more likely to end up in potentially traumatic situations and more likely to be traumatised by experiences not traditionally seen as traumatic. Because of this and our neurological differences we are less likely to see and be understood by professionals who deal with PTSD and thus also less likely to receive helpful support (which again may or may not differ from traditional treatment). I'm thankful that a year after one misdiagnosis I was able to access a second opinion, and that this person understood and was able to explain to me all of these things about autistic processing and so forth, helping me to understand and accept that this is a box that applies to me despite "nothing traumatic having happened" (I did tell the first person nothing traumatic had happened, so I guess it's no wonder they thought nothing traumatic had happened...). I'm not just making a fuss over nothing; my brain is trying hard to do a job.

The lady in the supermarket who commented "Don't worry, I'm amazed how well you're managing it all" when I apologised for forgetting to put the little divider at the end of my shopping on the conveyor belt (another sign my brain is not doing its job) had no idea what "it all" really was. To be honest, a baby in a sling, who was by that point sleeping, is no trouble at all, unless maybe she had clocked the previous blowout scene. I didn't even have Pre-School Peggy with me. "It all" for me this morning was PTSD and the fact that I had to collect my brain repeatedly on my circuit of the shop and coax it into doing enough of its job to get us by. Everybody has an "it all" every day, and maybe that lady realised. 

Be kind, you don't know what "it all" is going on for those annoying people you meet.

My Baby Girl (bonding)

My baby girl. This probably isn't the post you're expecting. It's not about my beautiful, perfect newborn and how besotted I am with her. I wrote those posts after our son was born. My first child, pretty much the best thing that had happened to me and although near-impossible at times and full of difficulty and distress, each day brought the delight in my little bundle that is associated with welcoming a new life. My life felt completed and fulfilled by meeting and caring for this baby. 

Now I watch in confusion and guilt as friends and even strangers coo in admiration of my second child, who is almost indistinguishable in photographs from the first. They are entranced by her cuteness, in awe and wonder at her skin and her nose and her smell and vying for time with her. Now I know borrowing a baby is very different from keeping one, but these people seem to love her more than I do. It's all wrong, that's not how this was meant to be.

Can't deny those toes are cute though...

Not that I hate her or even dislike her (for which I'm hugely grateful), but that connection, that love and delight, it just hasn't come yet. Joy doesn't spring up the moment I pick her up, and my nervous system doesn't suddenly breathe when she flops warmly on me. She's OK, she's not horrible or anything, but she doesn't feel like mine.

I'm thankful I have mental health support in place due to my struggles during pregnancy, and that I'm reassured that actually the magic bond (whatever that is) is rarely instant and that in many or even most cases it takes days, weeks or even months to grow, just as getting to know anybody else in life. There's nothing wrong with me or with her, it doesn't reflect on me as a parent or as a person and it doesn't mean it's how I feel forever.

But just as I can logically know that she is mine yet not feel that truth as my reality, I can know that it won't be like this forever and it's not because I don't love her, while also feeling sad, confused, guilty and worried about it. 

I feel almost as though I have been robbed of our first few weeks together; like I haven't really been there. Perhaps because I had such a negative experience of pregnancy, and distanced myself from it as much as possible so my brain hasn't caught up, or perhaps because the birth was a bit chaotic and I didn't get to feed her for a couple of hours afterwards, or perhaps because of the complicated emotions surrounding having a second child and the monumental and sudden shift in relationship with my first, or even because of our previous miscarriage, I think I've somehow been a bit dissociated from the beginning of our life together.

I care for her, problem-solve about her, interact with her and make sure to smile at her and talk to her and respond to her cues. I do enjoy kissing her on the head and stroking her hair at the back of her head, because they are soft and it feels nice. And as time goes by, the times where her warm weight rests on me in sleepy trust are where the seeds of connection start to germinate. But a lot of it is conscious, deliberate, almost as though I'm watching myself doing it rather than being there doing it, feeling it happen naturally because she's my daughter. 

And that's why I didn't know whether I would post this. What kind of parent feels like this about their child? Who doesn't love their baby; their longed-for rainbow baby? Who has days where they genuinely would not be bothered if somebody said that they were taking the baby away? And what kind of parent would admit it? And what kind of child would be able to hear these things about their early days without being damaged by it? I am the biggest part of her world in these early days; I am all she knows about goodness, and so I feel ashamed that she trusts and loves me implicitly even though I feel like this. Thankfully the strongest of those truths did not last long, and as well as the negatives gradually ebbing, the gaps are starting to fill, little by little. But it turns out, the parent living those truths could be any parent. And IS a lot more parents than you'd know, which is why I will be honest about it. In the midst of those times that was my reality. I didn't know if or when it would change. I was terrified I would love one of my children and not the other, and even more terrified that they would realise or that I'd treat them unfairly.

Bonding happens differently for different people, and can happen differently with each new baby. It can be affected by a whole number of other factors, such as traumatic birth, ill health of parent or baby or another family member, previous mental illness, difficult life circumstances (eg. financial struggles, housing, relationship difficulties, etc). But a lack of bonding, or delayed or difficult bonding is not a lack of love, and it is not hopeless or to be endured in silence, pain and shame. It may feel like you don't love your child, but the love in that time is different. It may not be flowing, emotional, "love you to bits" (unfortunate phrase for the autistic among us...!) love, but the deliberate love of actively caring for your baby and pursuing a bond where it has not sprung naturally, is a dedication to the child you know is yours and want to feel is yours. And there are ways to encourage the emotional bonding, and to water the seeds of connection. If you're as lucky as I have been, there are people trained to help you along the way, but I do know how stretched services are. Many times the seeds will find their own way to grow in their own time. Because it feels scary or bleak or devastating or hopeless does not mean it is so or will always be so. As is the message I am so often trying to give, there is hope. I find it risky, dangerous, to hope, but even just a few weeks on from starting this post I can use experience to tell you just because something is true now, does not mean it will always be. 

And my second message is that there should be no shame or hesitation in talking about these things. I am quite an open person on this blog. I air many of my difficult emotions and experiences here in the hope that they will help others in some way by increasing understanding. Yet it took me two months to write and I really wasn't certain I would post this. Could I admit to people who know me what was going on underneath those first few weeks? I talked about parts of it, feeling different to having my first, and the sadness of missing him now I was spending less quality time with him, but could I reveal the depth and truth of it? Would people judge? Would they not believe me because I looked like I loved her? But there should be no shame. And so I disarm the shame by talking about it. Sometimes things in a brain just don't slot in how we expect them to, and we shouldn't have to carry that burden alone. I'm thankful I don't, and that I have Mr Peggy, close family and friends, and a bunch of professionals who are there for me. I know not everybody does, so if anything here resonates and it might help to share it, please do message me.

The long May nights

Every time I open the window in these sunny early summer days, the birds sing.

Every time, it makes my stomach turn over, my heart pump faster, my breath catch and my muscles tense.

I love the sound of birdsong, the brush of an evening breeze, but my body still doesn't. It's not as bad as it used to be; I don't cry, and most times I can tolerate leaving the window open or staying outside to finish hanging the washing on the line. I don't spend the next few hours or days stuck in inescapable memories and emotions. 

At 4am the village church clock chimes for the thousandth time tonight. The birds are in full morning chorus and I can't help but be transported back four years to those other sleepless nights. 

So different and so distant, and yet so close and familiar. It's not distress that keeps me up now, it's my second child, who's just decided she'll take after her brother after all and drag me into the mire of full on sleep deprivation. I should be thankful, and I am. Thankful that my life looks so different now. Thankful for the undeserved gift of these two precious lives that I didn't dare hope for. Thankful for less distress.

And (not but) I wish I wasn't awake right now, and I wish those memories didn't trigger such emotions and thoughts. 

Both of these things can be true. 

And I wish I could appreciate this second child for all she is, our long-awaited and even longer-hoped-for baby. It might just help me through the long nights and sometimes long days. But I think that's a post for another day. She's gone to bed so I'd better seize the chance for a few minutes' kip.

Tracing

You trace up my torso and down my arm with your fingertips or sleepy closed fist in the circuit of some imaginary vehicle, just as you used to trace the skirting board on the stairs long before we knew it was a road.

When one of your first words was "brrm" we gained a window into your inner landscape and experience of the world so that now in your peaceful dreamy state I have a good idea of the stories that are sending you off to sleep. The sensations that at times have been trying as I wonder how long you will need me here - how long tonight before I am free to make my own sleepy journeys and how many months you will need me to join you on yours - are cherished and stored up in these days, because I know no matter how many they are, they will be limited. You will not always be this small, this close to me. And soon you will have to share me with another little person with their own journey to sleep, and our nights might have to change even if you haven't chosen it.

Each moment is a privilege and a treasure as you grow into your own person. I'm proud to see you need me less as you gain confidence with others and skills of your own. I enjoy sitting back and admiring you being you and not always needing me because you had me when you did need me. But precious boy, I hope nothing more than to always be here if you want to trace a path to the old familiar home.

Neurospicy Summer

Summer has arrived!

I love the cheerfulness of sunshine-y weather, and I love being able to be outside more and to let Little Peggy wander freely through the house and garden without having to pile coats on or worry about wet feet. I LOVE being able to hang the washing out to dry on the line more often (or having it dry without being rained on thrice first...). Summer feels light, airy, cheery and free, at least when it's not oppressive and deathly like last year's 40°c heatwave...

I'm sure you sense a "but" coming.

Is it the "but" of "incessantly hydrating and applying suncream to toddlers is a pain, even when they're compliant"? Or the "but" of making sure you don't kill the plants (all two of them) by forgetting to water them? No, I'm sure everybody has their own minor inconveniences of summer, just as with every season, but you don't need me to tell you about those.

I don't want to be negative about summer or about being neurodivergent, but at the risk of sounding like a whinge-er I want to talk about a few considerations that feature more particularly in a neurodivergent life and might not seem an issue to others. Some are from my own experience and others are observed, mostly from my neurospicy work life. Perhaps they seem minor or strange to you or perhaps you think, "well that's annoying for everyone." Maybe so, but if someone in your life has seemed out of sorts this week it could perhaps be that they are dealing with some of this or similar, on top of whatever else life is throwing at them right now, and the struggle is genuine.

Suncream

Gotta start with that one! Suncream can be a sensory nightmare for any child (or adult) but even more so someone with sensory processing differences. I remember screaming blue murder at my Mum as a child "you're pulling my arms off!" 

The smell, for one - love it or hate it, we all know the distinctive smell of summer. But if you're a child you probably don't get to choose it, you can't get away from it once it's on you and you're stuck with that extra, possibly distressing, sensory input all day. And then consider arriving at school to find that there are six different brands of suncream that your classmates are all wearing: six different smells to constantly filter through the brain's processing departments.

And next there's the texture - sticky sticky sticky! You stick to yourself, and stuff (like sand) sticks to you. Also everyone looks shiny all of a sudden... Personally I can tolerate suncream although I do hate the texture of it. I buy the spray on creams now I'm an adult, because they leave me less sticky, and I apply sparingly only in the places that really need it. Adults in childcare settings tend to slather on liberally. It's much quicker. And you know they're safe from the sun. But maybe think twice - perhaps you could improve a child's day by applying carefully.

And finally, let's not discount the effect on routines and expectations: suncream adds an extra (and unexpected, for a while) step to the routine of going outside or getting ready in the morning. This could be a real problem for some people.

Routines

While we're on the topic of routines, these can change with the weather too - often we go outside earlier in the day to avoid the worst of the heat. This means other things move around and we don't know what to expect from day to day. "Yesterday we went straight outside when we got to school, I can't wait for today." But then today we don't. Or, "We've gone outside before our usual morning activity. When will we do that activity? What if we don't do it at all?".

We may also need to schedule in extra drinks, especially as recognising thirst (interoception) can be tricky for neurodivergent types. Washing routines may change and any other routine you can think of really! 

Clothing

Hats... some love 'em, some hate 'em. Some, like Little Peggy, can be adamant one way or the other depending on mood.

I have enough of a problem swapping from winter to summer coat (and then to none), but there's more to the summer adjustment than this.

They are awesome shorts
from a wonderful friend.
And now they say neenaw
instead of brrm!

In our house we've also had to work hard on the transition to short sleeves. Little Peggy is not so keen on them. Even before the hot weather he wouldn't tolerate having sleeves rolled up for water or messy play. If his trouser leg or sleeve (or mine!) got pushed up he would pull it down or say "oh no" to ask me to. I remember getting shorts out a few weeks ago to see whether we had any in his size. I knew about the short sleeves/trousers issue. I pulled out a pair of shorts with cars on and he was so excited: "brrm brrm!" He wanted to put them on. First they went over his trousers, then I persuaded him to take the trousers off so I could see if they fit properly. I thought I'd done it. Then he insisted on putting the trousers over the top. Even the joy of the car trousers was not enough to get his legs out, so he wore two pairs of trousers that day!

I'm all for people making their own choices but I also need to protect him from overheating now that it is hot hot. Luckily it is now already hot in the morning and we've worked out that it seems better if we put shorts and t-shirt on straight away and long sleeves are not seen. He still usually tries to pull his sleeves down but I think he's getting used to it - there is less "oh no"ing. We've only managed to be sock free one day so far!

And of course in all of this I have great sympathy with him, because I hate it too. I like the sensation of chosen textures (usually 95% cotton 5% elastane!) against my skin. I do NOT like the texture of skin against my skin. ESPECIALLY when it is warm and sticky. I wrote before about trying to get round this issue when breastfeeding. As a child I didn't like skirts or dresses. For many reasons, but one of them being that your legs stick together, at least in summer ones when you don't wear tights or leggings underneath. A big hoody makes me feel cosy and safe. Having the air on my skin is not as bad as touching skin but still feels uncomfortable. Maybe it's partly the weight from the clothing that I like too, adding proprioceptive input to the tactile sensation.

And neurodivergence doesn't just mean autism although I write a lot about that. Mental ill health also comes under the banner (as do many spices that aren't in my personal neurocupboard - ADHD, dyspraxia and many more) and can add further difficulties to the summer experience. In the past I have worn long sleeves to cover self harm in contexts where I felt I needed to. Eating disorders often come with body image issues or body dysmorphia and people may feel uncomfortable in clothing that does not cover their body or shape. People with certain types of trauma may also wish to hide their body. OCD may be triggered by a whole host of summer-related factors.

Temperature 

This one is so obvious that I nearly forgot it! Some people's bodies are particularly sensitive to changes in temperature, and this can also be a sensory issue for autistic people. Simply being hot is distressing or overloading. 

Interoception problems can play into clothing problems meaning that people don't register when they are too hot and can even become ill from overheating or dehydrating without realising.

Sweat

Tied in with temperature, the sensations of sweating can also be problematic if clothing becomes wet (NOT OKAY!!), skin feels different (don't even think about drippy sweat!!) or the body smells different. The need to wash more could be difficult for sensory reasons or because of a change to routine.

Sunshine/light

The sun is bright! Which is lovely. And at the same time it can lead to sensory overload. I love sunny weather but I struggle with too much brightness, and I'm not even someone who gets migraines! It took me ages to realise why I would feel so overwhelmed and exhausted after visiting my family in the post-covid restriction era. I thought it was because I had become unused to spending time there, but eventually I realised it was because I was sitting in the conservatory all day (to minimise contamination). I had brightness all day and I was overloading me. I started wearing my sunglasses for some of the time and it was better. But I also don't really like wearing sunglasses because they change the colours of the world and make it less vibrant and beautiful (to me, anyway). So it's swings and roundabouts! For some people the sensation of sunglasses on their face will also be too overloading so that's an issue to consider as well.

Fans

Visually whizzy, noisy ear-fillers, and disturbing air-movers! Actually, some autistic people really LOVE fans and find them very stimmy. Some love them but find them overstimulating. I find that the sensations (air blowing on me and sound especially) fill my brain, which I can cope with if I'm doing OK but is too much if I'm already a little overdone.

Food

When the weather warms up people suddenly start doing strange things like eating cold food for tea (dinner/evening meal, whatever your preferred terminology!) and eating outside! "Ooh it's too hot to eat much this afternoon we'll just have a light lunch" (what if I'm ravenous?!). These things often happen at short notice too, which is even more difficult for NDs to cope with. Obviously they're not strange to everyone but it's useful to note that what we may not even register as a change is a big difference in some brains.

Change

Perhaps the underlying issue with all of this is change - most neurodivergent people struggle with change, and the changing weather brings all of these different changes I've described and many more I haven't noticed or highlighted here. Even children playing outside more changes the auditory landscape and can be troublesome for some people. Even good changes are hard for a neurodivergent brain to adjust to, and some of those that come with summer are difficult or even distressing for some people.

Executive function

Perhaps this should come under routines, or under change, but all the changes that come with the season change can put an extra strain on executive function. Things that were previously automatic routines may need thinking about (when leaving the house I must now try and remember to take my sunglasses and to water the plants, as well as taking my dinner bag and rucksack which is my routine). There may be additional decisions to make, for example with clothing choices - perhaps I had a routine of which clothes I wore on which days and now I need to develop a new routine of summer clothes, which involves choosing outfits for a time. I need to choose whether to wear a second layer and when to take it off (bear in mind the complicated equation of tactile sensory issues, interoceptive issues and psychological issues as well as practicality about having a place to store the discarded layer and trying to remember to take it home again later!). Of course difficulty sleeping in hot weather impacts on executive function too.

All of these factors mean other executive functions such as emotional regulation become underfunded, as it were, with the effort diverted to adjusting to the changes.

So if you care for someone of a different neurotype, hopefully this will give you an idea as to the kind of things that might be going on for them. It may not be as simple as "defiance/temper/control" in children, or irritability/inappropriate behaviour/exhaustion in adults - the brain and body are doing a whole lot of extra work to try and come to terms with changes, discomforts and confusion. What looks like an overreaction may well be proportionate to what is happening for somebody. Compassion, understanding and a step by step approach can all help to make these things easier, as well as making sure there is even more time/space for whichever activities/environments help your person to be well regulated.

April, Awareness, Acceptance, Anarchy

Okay, I'll be honest and tell you there's nothing about anarchy in this post, I just got bored of the boring stuff. Unless I decide to throw something anarchical in for a laugh. Most likely my use of the "word" anarchical is about as lawless as it's going to get.

I absolutely did not plan to write anything on this topic (awareness/acceptance etc, not anarchy) during April. I actually got a bit tired of posts about autism awareness month, autism acceptance month, people supporting it, people getting cross about it, it kind of put me off Autism a bit, as it were!

BUT as tends to happen, I had a moment which got me thinking.

I had one of those jolly things, a meeting about me, yippee. They usually start with people giving a brief overview of what has happened since any previous meeting. I was happy enough with the first person's summary of our work, detailing how we had made reasonable adjustments and Peggy had worked very hard etc etc.

Then the second person said something in their update which gave me the moment. "Peggy has made lots of reasonable adjustments for me and my odd ways of working and needs." 

Why does that sound odd? Answers on a postcard or in a comment - please do actually think about it!*

That just made me chuckle, while you're thinking about it

It was said in jest and taken as such, yet speaks volumes. I know exactly what that person was saying when they said it (I think!), and I know that they know I will receive that message though it may be passed over by others as a humorous aside.

What that person was saying was, Peggy's needs are not a problem. Yes, she has idiosyncrasies and may act or communicate differently from some other people, but actually nobody is "normal" and it is everybody's job to adjust for everybody else. While we may have made a number of observable differences to our sessions to accommodate Peggy more comfortably, Peggy has also made many adjustments in order to access our (reasonably adjusted) service.

In fact, Peggy does this all day every day in order to participate in the world, because people with her idiosyncrasies are in the minority and would not always elicit respect or kindness were they to walk through life entirely unmasked.

The person was perhaps pointing out that by highlighting the reasonable adjustments we may be making the person feel more "other," more different, more excluded, lesser by reason of us having to do something for them, or wrong because they don't fit the standard.

Of course that was not what the first person meant, and neither did I take it that way. We have a good relationship and they have been very helpful to me, even if I don't agree 100% with everything they say. They were reflecting on how we had worked together in a way that worked for both of us and acknowledging that that is not a given.

But I have to say I was glad of the second voice. It reminded me that while accommodating and including are positive and necessary there is something even more beautiful: belonging. 

I have a suspicion that the second person "gets" me better than any other professional ever has because they have a similar brain. Not on a piece of paper, but just as I find understanding comes much more naturally with autistic people or other neurodivergent people, so it does with this person. My ways do not stick out like a sore thumb to them. I am not baffling or confusing, a mystery to be solved or somebody to be scared of.

In belonging a person is of equal value, equally capable, equally interesting (or boring!). They are not remarkable, and I think that is the key: when we belong we don't have to make extra effort to access the things other people access. We don't feel like a problem and our presence isn't a speciality but a normality. To be a natural part of things is what the soul needs to be well.

It's a drop in the ocean and I wish there were more voices like that in services, but every drop affects the water around it and perhaps it rippled one or two people today - it did me.

I will always belong here

*For a suggestion, maybe one day I'll write about medical vs social model of disability but I can't be bothered right now

I Stole From Anxiety

Outstretched arms inviting a thief. Offering a moment.

The warm weight of trust unreserved. The moment is mine. Close my eyes, dive right in. Sink deep. Our heads together; the meaning of peace.

Warm sun on our skin, soft breeze. Distant noise like a hazy soundtrack: lawnmower, laughter, birdsong, traffic. Warm breath moving miniature lungs.

Every sensation is treasured - to be bottled, if it would. Every muscle suspended in animation to preserve our bubble.

This stolen moment so freely given heals me more than all others.

The Shoes of Despair!

And here's another one - thank you executive dysfunction! I've waffled about executive function before so I won't explain it now, just a little reminder of some of the applications or implications.

The hole is so big you
can see my sock

I need to buy a new pair of shoes. This has been the state of affairs for several weeks, and that's a conservative estimate based on when I obtained the refund for the faulty pair. It's actually more like several months, depending on which precise stage of decay you choose to name "out of circulation," which is a little embarrassing. (The shoes are still in circulation because I have not replaced them...)

The thing is, I buy the same shoes for everyday wear. They usually last two to three years. It was hard enough this time round when I bought them in October, the previous pair having finally worn through to having holes in the soles. They don't sell the precise same ones any more so I ordered the three closest approximations to choose from. None were quite right, obviously, so I ended up with the two I couldn't decide between (why hello again executive dysfunction, lovely to see you!). Each had benefits and drawbacks and was better in a different context. I radically accepted this 😉

BUT THEN! Within a few short months one of the pairs was already dead, even by my standards. Noooo! I ignored the fact for a while, eventually I became conscious of appearing disreputable and it takes a while before I care about that!

Finally I caved and faced the truth. So I emailed the company asking for a refund so I could buy a new pair. Excellent speedy response, no quibbles, thank you Mountain Warehouse.

Less comfy but
more presentable

But, um, that was weeks ago and I'm still wearing the old ones, with a cold toe trying not to tread in puddles on wet days. I had a rough couple of weeks in March so once I surfaced from those I told myself it was only a week until the holidays and I would do it then. It is the last night of the holidays. I haven't done it. I have begun an online search several times and become overwhelmed and suddenly I am going to be faced with work again and have only the shoes I want to keep presentable or the shoes that will probably get me sacked (either for presentation or for health and safety - no open-toed shoes 🤣). Oh dear.

But buying shoes is too much brain. I cannot buy the same for they may die just as quickly. I cannot repeat the pair I have, for I need a pair with the complementary features that are better in different environments. I can't see any other similar affordable ones. Maybe I should branch out and try a completely different type of shoe, but WHERE TO START??? And so I don't. I write blog posts about it instead...

If you see me barefoot you know why 😉

Anxiety

Most autistic people live with frequent to constant anxiety at some level. For some it is relatively mild and/or manageable; for others, incapacitating.

I'm not sure whether any part of it is intrinsic to being autistic, but certainly the lion's share (not sure why the lion gets a share of autistic anxiety 🤔) is caused by living in a world where your brain type is a minority and most environments, systems and social networks are designed for a type of brain that's different from yours.

My anxiety varies wildly depending on all kinds of factors. Some I've figured out, like tiredness, sensory overload and social overload and others I haven't so it appears random. Sometimes I can go days without experiencing more than mild, ignorable anxiety. I can do and enjoy the activities I have chosen and the jobs I need to do - sometimes even things that aren't imminently urgent. At other times I know that the anxiety is more. I have to work at managing it, using different skills to keep calm and either acting the opposite and not allowing it to shrink or interrupt my life, or listening to what it is telling me and scaling things back as needed. And then sometimes it seems unmanageable. I can't do the things I want or need to do, I have meltdowns, shutdowns or panic attacks, and it is hard to recover.

Today I haven't had any of the big moments (yet!), but anxiety meant I did not speak to the person I've been trying to meet for several weeks who was finally in the same place as me. It meant I spent my half hour car journey doing breathing exercises and mindfulness to try and stay calm and avoid spiralling. It meant I didn't look for the person who's selling a balance bike I'd like for Little Peggy. It meant I struggled to concentrate on the talk because I kept having to retrieve my thoughts from anxiety-land. It meant I didn't chat to the person I wanted to catch up with about their recent visits to families with disabled children in Malawi, and whether there's any way I could help or links we could build with my work. It meant I nearly forgot to use my Tangle instead of harmful stims. It meant I had to talk myself into eating my meals. It meant noise was more noisy and stress was more stressy. It meant I didn't tell Mr Peggy how anxious I was until about the fourth invitation, at which point I still said very little about it. In fact talking at all is much more effort than normal - so I've been masking by talking anyway, which eats further into my spoon supplies (amusing metaphorical image...).

And probably a thousand other things that I didn't notice or can't be bothered to list.

Some of today's anxiety was inevitable with things that are coming up in my week. Some could have been avoided or reduced by better communication. It is compounded by memories popping up as usual and bringing difficult emotions.

So yeah. Anxiety. If you know any kind of ND (neurodivergent person - autistic, ADHD, dyslexic, dyspraxic etc) they probably live with anxiety. It might not look the same every day or in every situation: that doesn't mean they're making it up or that they're "acting out," being dramatic or manipulative. Their resources just aren't stretching so far right now. Please be kind. If you want to help, get to know the person and what helps to reduce their anxiety. Just asking is likely to automatically reduce anxiety around you even if there's nothing else we ask - many of my lovely Peggies have done this and it makes me feel more relaxed when they're around. Thanks people!

Communication failure strikes again

My PIP review form came this week. That's not what this post is about, but it does mean that at least this little incident served some purpose in reminding me that I am not a Round Peg. I often find tasks like this difficult because I think that I get on pretty well in the grand scheme of things and shouldn't be asking for or receiving special treatment like adjustments at work or benefits from the government.

But last week it turned out that not only am I incapable of sitting on a chair,* but I am not the world's finest communicator. 

I shall wait for you all to retrieve your lower jaws from the floor where they have fallen in shock...

I tried to go home sick from work on Wednesday. This is already notable, in all fairness. I am terrible at knowing when I should or shouldn't be at work: I do not understand the Line (except the one where you've been sick) and how or when to draw it. It is too vague; it is a fuzz, not a line. I had got as far as consider that maybe I should probably draw it. I could not bring myself to call in sick on teacher strike day. I would go in and give it my best shot, get through the day and arrange after school if I still felt bad that I wouldn't come in on Thursday (that is easier because it is planned and the decision is spaced away from the action and I know what to expect on the day).

After I got to work we were informed that our class would be closed and told where we each would be covering. Once the informer had left the room I realised I had only found out about the morning (processing time...). Located Person With Information. Asked what I would be doing in the afternoon. They said it hadn't been settled yet and I would find out later. Thought very quickly. Replied "OK, maybe if I'm not desperately needed I could go home: I'm really not very well but I didn't feel I could call in sick on teacher strike day."

The Person With Information saw me a little later and expressed sympathy, saying it was a strange day for us all and I could wait in my class until the pupils arrived if that helped. I agreed and mentioned that my symptoms (fever, intense headache and incredibly sore throat) were not helping either.

When I eventually went to ask what was happening in the afternoon, having already taken my lunch break because I was unable to find People With Information, I was told I was going to cover someone who was ill and needed to go home. I mentioned for a final time that I was also ill and went off as instructed.

They didn't need me for five minutes and I needed to fetch my coat and as soon as I left the room I found myself in tears. I had a little cry, washed my face and continued the day. I would like to say with grace and professionalism but I definitely whinged!!! At least I have enough self confidence to whinge about it - in the past I would have been so upset, and ashamed that I'd asked for something I shouldn't have, that I wouldn't have uttered another word about it to anyone.

The next day I went to school. And the next.

Now I bluffed it out and joked about how I was clearly well enough to be there because they hadn't sent me home, but genuinely, even though I knew maybe I should be at home, I also believed that. Remember I'm not good at making that call, and not confident in those decisions once made, so if someone says or acts in a ways that suggests I have got it wrong, then I assume they must be right.

By Friday evening I was taking antibiotics for Strep A throat and ear infection. That I have probably now spread to half my class.

The two problems were a: I wasn't confident in how ill I was or whether that was too ill to be at work, and after many years I still don't have a reliable way to make that decision and b: the communication regarding my tentative decision failed. Although I have managed once or twice in the past, I still did not have a reliable way of communicating that decision.

The thing is, at the time I only knew about one of those problems and so I believed I was wrong and should be at work because it had been judged to be so. The second problem only came out on the Friday when I asked to keep my phone on me while I waited for a doctor call-back. This was a different Person With Information and one who had only been present at my third attempt to convey that I was unwell (my attempts became clumsier each time, and I didn't reiterate the bit about going home because I had already said it so they already knew I wanted to and I didn't want to seem demanding as I have been told plenty of times in that setting and others that just because I ask for something doesn't mean someone is obliged to give it. A fact that I am only too well aware of).

Their understanding of the situation was very different from mine. They had not received that message that I had requested to go home, and assumed that I had not made it clearly enough to be understood. I got the impression that it was very much my fault that this had happened. I still don't know whether this was indeed entirely my fault or perhaps a little of the old double empathy. It is in the past and ultimately now doesn't matter.

When told that it is my responsibility to say I need to go home rather than work's to send me, I asked what I should do when I have made that decision and have asked and haven't been allowed. The Person seemed confused by this question and suggested the part about how I probably hadn't communicated clearly enough. But helpfully, they gave a script, so now at least I have a solution for problem b and I can't feel worried about it being too demanding because it is literally what I've been told to say. It's just very confusing when half the time you're told you shouldn't ask for things and then you're told you should!

So yes, the upshot is, I am not Round (for many other reasons than just this!!) and I will try not to feel guilty filling in my PIP review. It's not my decision whether they award it, anyway - I will just give them the information.

*that's a joke - one day recently I managed to fall off one in two different ways in the space of five minutes, causing much hilarity to myself and others

Sunny Day

Today feels like a happy day. The sun is shining, I know the plan for the day, I think the small person may have turned the corner in his illness, I slept a tiny bit more last night and I want to be happy. It's a good day to be happy.

But I am not.

I want the sunshine to take away the overwhelm of the past few weeks. I want it to render my nervous system regulated, to evaporate my array of painful emotions and to dance away with my negative thoughts. I want to just be thankful for all the positives in my life.

The sun is beautiful, wonderful and powerful but it does not do that. Some days, for a time perhaps, it does. Or perhaps it is not meant to.

Perhaps I am meant to sit, another day, with my companions overwhelm, fear, frustration, confusion, anxiety.

Try to self care, but what does self care need to look like today? Preparing for tomorrow so I am ready and not anxious about what needs to be done? Or investing the time in sensory soothing to try and bring my stress levels down? Calling in sick for tomorrow because I know I'm reaching my coping limits and tomorrow could ask even more of me than an ordinary stressful day at work? Or resolving to go in to distract myself from my brain, to prove that I can do this, because I'm scared about taking time off and because I can't let my colleagues down on a difficult day? Asking for more help, but what do I even want, how would someone help me?

I don't have the energy to figure it out - I don't have the energy to stop, just to keep doing the next thing in front of me (right now that's writing and then doing nothing. I know it's not any of the things that will help but it's all I can manage right now) and hope the rest sorts itself out. At least I tell Mr Peggy how I am feeling and he is there for me.

I try to make space for my new companion, compassion, in there with the old familiars. Compassion nudges black and white thinking and panic over a little, and lets anxiety lean on it. I'm not sure what its wise guidance is today, but I've asked it to join us at least. One step at a time.

There will be more sunny days - maybe the next one will be sunnier. One step at a time.

Hatty Christmas!

🎵With your hats and my hats and my hats and your hats the more we get together the hattier we'll be🎵

Attention, all neurotypes: This is your friendly neighbourhood reminder that it's OK and a good idea to do Christmas however it works best for you. Introvert, extrovert, lonely, content, anxious, peaceful, grieving, joyful, scared, however you're feeling.

This song has been going round and round and round and round in my head since it invented itself when Lil' Peggy brought me our hats for a walk yesterday. In case you didn't sing it in your head or don't know the original song, it is a truer and more inclusive version of the song "For my friends are your friends and your friends are my friends. The more we get together the happier we'll be"

Of course the original song is a lovely sentiment and probably designed to promote inclusion. And it's a pleasing rolling tune that's easy to pick up, fun to sing and sticks on your head. I like it. But it's always irked me that it's just not true! For me at least!

Other people's friends aren't always my friends. Although we may share friends or their friends may become my friends, occasionally we really don't get on. Certainly I may not have met them yet, in which case they absolutely aren't my friends even if they may be one day.

And I have a definite social battery, so "the more we get together the happier we'll be" just ain't it! I do actually like people and need to enjoy spending time with them, a discovery I was pleased to make a few years ago, but the quantity and frequency of my socialising needs to be a lot less than for many others. I need down time to recharge alone and space for regulating activities. More does not infinitely equal happier!

But with my hats and your hats, we will definitely be more hatty the more we're together (if hattiness = nHATS x tHATS, where n=number and t=time in presence of).

Some great adaptations I've made to Christmas the past couple of years have been to allow myself time out where needed (this builds itself in naturally with a small breastfed child, but I had planned for it before the child came along too, although I didn't get a chance to implement because of covid), and to only spend a few days at a time with people if going away. We do go and stay with people a few times a year either as a family or me and the smol, but I now know my limits and tend to keep it to about three days at a time because I know that this is about my capacity before the balance between benefit and difficulty starts to tip.

Knowing what is going to happen and what to expect helps me a lot and my Peggies-in-law are amazing at this - before we go to stay with them they send a suggested itinerary and meal plan. This is fantastic because it means we can make any necessary changes or flag up things they need to be aware of (Little Peggy can't have cow's milk so when buying things like pies from farm shops they need checking) and I know what is happening and what is available. I can also look at menus in advance so I'm not under decision pressure at the time, and I can decide how I spend my time depending on what will be happening (eg. if I know we'll be out all afternoon and evening I might spend more time in the morning away from the family to minimise overload). Even little things like deciding what to wear (inside/outside/formality of occasion) are helped by understanding what will happen when. It just helps my brain relax because I am often thinking about what is coming up in my day or week so I can be prepared for it, and if I don't know then that thought keeps buzzing round taking up brainspace because it's unresolved.

So. If you know something that will help you at Christmas (or any other time!), to quote (slightly out of context) a very wise Peggy who has helped me a lot "it's OK to say it."

Note: saying it explicitly may be more uncomfortable but may in the long run be more helpful because then others are aware and can help to make sure the adjustments that help you cope are kept to, or can show more understanding of any struggles or make different accommodations if they are not kept to.

And last but definitely not least, if you have been brave enough to say it and others have disregarded or forgotten about what you have said, that DOES NOT automatically mean you were wrong for saying it. It does not mean you shouldn't have said it, or that you are a bad person or that you don't deserve whatever adjustment you were hoping to make (or are still going to make, but are now probably feeling guilty about making). 

Sometimes things need saying a few times. Sometimes they need explaining a different way. Sometimes there's a compromise that will still meet your needs. Sometimes people will not understand. Sometimes understanding grows over time.

Stating that doing something differently would help you is not a character flaw or a crime! It might even help others too - inclusivity often benefits everyone not just the person it's "designed for." Or it might make others glad that they know they are maximising your enjoyment and wellbeing by accommodating your needs or preferences.

I hope you have whatever kind of Christmas time you need this year.

Echolalia

So my previous post has made me finally write this one! I've been mulling over another of those "autism comorbidities*" for a few weeks - one that I've not thought about much before: echolalia.

Now I found this great article that pretty much says everything I wanted to say about it, so I would suggest you read that instead.

But if you can't be bothered I will summarise:

Echolalia is basically repeating words or phrases, either immediately or later. It used to be described as "meaninglessly" or "pointlessly" but this is SO WRONG. People do it for many reasons: to help process what they've heard, to communicate a response, to perform socially (ie. they know a response is required but don't know what), because it's fun or stimmy, to communicate a new message, to practise speech sounds, to make links and categorise new information (ok, that's similar to the first one I said - processing).

Actually it's not just an "autism" thing - people quoting films in everyday conversations are technically doing it - but autistic people can tend to do it a lot more, or a higher percentage of their communication might consist of borrowed phrases. In fact it's amazing how much you can say with recycled dialogue and some communicators are ingenious at getting a message across either what they have. I always remember Joanna Grace telling of a lad who said everything he needed to through quotes from Thomas the Tank Engine: "But wait, we've left the refreshment lady behind!" was the way he reminded the teachers of a quiet member of the class who nearly got left behind one day!

I do it more than I had realised - like with the surprising item in the bagging area title to my previous post. I think I do it mostly for fun - it is a little like word play to me - and also because my brain makes links, connections and patterns. It likes to join things together looking for patterns, so often if I say something that is also in a book or song I will extend my sentence by finishing the quote, for example Little Peggy might be wandering off up the road as he does, and I will say "where are you going?" but then I finish with "to, little brown mouse" from the Gruffalo. Sometimes I carry on further through the story! If I say "here I am" I usually follow it up with "send me", a quote from Isaiah in the Bible that I've heard a few talks on.

Maybe it's partly completeness for me. If my brain has made the link to something else it wants to complete that thing or at least acknowledge the link in order to let go of it and move on. Other times it's playful. And perhaps if I am not in the mood to communicate directly it is easier to use someone else's words as they feel less personal or vulnerable. At any rate I think it's less effort and more fun to use preloved phrases - I don't have to put words together, I can be a bit artistic, and in a weird way I know it's "right" because it's already been said by someone else, so I can't get it wrong and be weird. Which of course is nonsense because it can make you sound a lot more weird! And writing that I realise I have a whole lot of words and phrases that I have pilfered from many many real life people over the years - some I just like, but I think the theory may be "they are accepted and respected; if I use their words I will be too - I will belong and won't get it wrong.

So yes, read the article and get interested - the more I think about it the more fascinated I get!

*What a terrible term! Basically just a Thing, that quite often coincides with being autistic, but can happen without being autistic and not all autistic people do it.

Surprising item in the bagging area! And what to do about it

What a great opportunity to practise coping skills...

A surprise day. I'll refrain from my oft-used phrase of "it's all wrong" because it's not wrong that I'm at home looking after my poorly child. 

But it does raise a number of issues of emotion, thought, logistics and executive function. And the "wrong" feeling autistic people get when things aren't how they're supposed to be.

The day doesn't have a plan. Well it did, but I'll get to that later. How do we pass an unexpected day? Home days don't usually start this early - we got up and ready as though it were a work day, because it was supposed to be. What do I do with the time until the day starts? And what do we do after that - we have no activities planned. What is he well enough for? Can I take him out if the Calpol perks him up eventually or is it too risky in case he's carrying scarlet fever? I have the wrong food - do I eat work food at home or do I waste the work food? I'm wearing work clothes - do I stay in them because it's Wednesday or get changed because I'm at home?

What do we do tomorrow if he's still too ill to go to childcare? I've taken a dependent care leave day today but they are very limited and only granted at the discretion of my employer - not an entitlement. How can I judge by 3pm today how he is going to be tomorrow?! Will he be well enough to stay with Daddy and how bad would I feel about Mr Peggy having to rearrange his day?

And then the emotions: frustration because I know the staffing in our class has been terrible this week so I was looking forward to going in and being a real help. Instead I'm adding to the problem (bit of guilt too, although im trying not to guilt myself). And more frustration and disappointment because I was super pleased with the fact that I hadn't needed any time off this half term. I thought I had finally made it through a complete half term but now we've fallen at the last hurdle. I'm glad it wasn't a sick day for me because at least I still haven't needed time off sick, but the pleasing completeness and sense of achievement and things being "back to normal" and feeling reliable are gone.

And then the worry for the future - what if I'm just not reliable any more? What if I need too much time off - I'm already partying with HR. What if Little Peggy is more ill another time and I should have saved the time for then?

He's finally perked up enough to leave my knee for two minutes, twice (he is back on again now), so of course I am questioning whether I really needed to stay home with him (he was up most of the night screaming for significant portions of it, has a temperature and has been in contact with scarlet fever). But that's the decision Mr Peggy and I made so really it doesn't matter whether it was right or wrong - that's just how it is now.

So now I need to work out what the day is. How do I deal with the discombobulation, the emotions and the thoughts? 

Number one: I don't use any harmful coping strategies.

Number two: I take one step at a time. Right now what needs to happen?

Number three: I radically accept not having a plan. The day will depend on what the little one needs and that might change. Not having a plan is better than needing to unhave a plan! I didn't start the day with plans for home so there's nothing I need to achieve other than looking after him (and myself)

Number four: I take a compassionate approach. I listen to what I am thinking and feeling - it's ok that those thoughts and feelings are there. I go easy on myself and remind myself I don't need to "fix" all this right now. One step at a time is better. Time, space, moving away from black and whites, gently feel your way and remind yourself you will get through it and the world is not ending. Process what's happening eg by writing (this!) and think about what will genuinely be useful to you.

Number five: start thinking about options. Not a "plan" because I'll need to be flexible, but possibilities. Maybe we'll have an opportunity to do the Christmas cards together that I haven't found time for yet. Maybe I can finish parcelling up the parcels. Maybe we can still collect the marketplace presents I was going to get after school, as a "get out of the house without contaminating anyone or freezing the poorly child" option. Maybe we'll just be bundled up on the sofa with the TV on. None of these are binding but they might help me decide what to do with the time rather than getting stuck and stagnating and all feeling even worse.

Number six: what can I do for me and my body, brain and nervous system to make things better? Just because it's a difficult circumstance and I've made things more difficult for others doesnt mean it will help anybody if I feel terrible all day (in my head, it's not what's meant to happen so it's Bad, and if I try and feel less bad about it that makes me Badder, or something...). Easing the "suffering" doesn't negate the difficulty for myself or others. Right now I can't make it any better for the others but if I ease my own system I am in a better place to help when I am back, and to stop any negative spiral in myself. I will care for poorly one better if I am in a better place. So I can use my CFT resources of soothing rhythm breathing, safe place and compassionate companion. I can write to process. I can make sure we do get outside at some point, even if it's just for five minutes. I can parcel the parcels to feel I've done something. Maybe I might buy myself something - there's something I've been deliberating on for a few weeks. Or I might read a bit of a book or listen to some music. At any rate I'll look for a bit of joy. 

The boy is curled up sleeping on me (probably the only way he'll rest today - hence no nook or jigsaws!). He's definitely not OK, naps at 10am are unheard of, but the day will be. The world will keep on turning and tomorrow will be a new day; we'll deal with it when it comes!

Was it a Good Idea? Dialectics again

In a similar vein to my recent post Difficult ≠ Disaster, I have been practising challenging my tendency to black and white thinking. 

Last weekend I took part in a dance performance, the first I have done in nearly four years. It involved lots of weekend rehearsals, time away from Lil' Peggy and Mr Peggy and one extremely long and stressful day for all of us! I deliberated for a long time before committing in August because I couldn't decide whether it would be a Good Idea or a Bad Idea to participate.

It's a particularly autistic thinking style although obviously only too familiar to most non-autistic people as well. We just seem to lean especially towards categorising things into two extremes: Good or bad, possible or impossible, nice or horrible, right or wrong.

For me, it makes the world easier to navigate: if I know what is what then I know what to expect, how to respond correctly to things, and it's clear what is safe, good and acceptable and what needs to be avoided. Grey areas are confusing and require a lot of processing, for which I don't always have capacity (or which takes away from my capacity for other things).

So it's a logical, sensible thing for my brain to do, to economise on power by simplifying things and ultimately to keep me "safe" by making sure I don't run into trouble of any kind (anything from physical accidents to social rejection).

The problem is, there are a couple of side effects.

• Things don't just fit into those categories. Most things in the world are a mixture of positive and negative, and there are situations where rules change and need to be flexible. Things can fit in more than one category or switch categories depending on context. 
• It can result in the "safe" option shrinking and shrinking to make sure I'm really certain it's safe.
• You can miss out on or eliminate things that would bring some benefit because they also have negative aspects.
• You can appear judgmental or critical (or overly liberal!) if you draw your lines in the wrong places. Which in itself is an example of what I'm talking about! There usually isn't a "right" or "wrong" place to draw the line - different people draw their metaphorical lines in different places!

So how to avoid these pitfalls if you are a naturally black-and-white thinker? Firstly just realising that you see and interpret the world through that lens can help. Once you realise and notice yourself doing it (as I did above!) you can start to enquire as to whether that's the only way it can be seen or whether there might be more options.

For myself, I think I've found three alternatives to a black and white view:

1. Perhaps most obviously but perhaps most difficult for a habitually and naturally binary thinker, is to see a continuum. Although there is an extreme at each end, states exist in between. To be honest, I think as well as being hard to do this one may not be the most helpful because even a continuum suggests the relationship between the two extremes is a linear scale - more to less, good to bad - which it may not always be (it may vary dependent on context, for example).

2. Get dialectical about it: both of these things can be true! I have waxed lyrical about this phrase before so I'll keep it brief, but if you can get your binary head around entertaining the coexistence of opposing states it will truly change your internal landscape (in a good way).

3. If that's a step too far, sometimes a manageable first step for me in shifting my thinking or perception is just to subtly relabel my categories. Instead of possible and impossible, I might choose likely and unlikely or easy and difficult. Bad and good might become upsetting and enjoyable. The lines soften, possibilities other than the extremes begin to exist.

I did the project and of course, it wasn't a Good Idea or a Bad Idea. I kept having moments where I thought I'd definitely done the Wrong Thing by doing it, or the Right Thing. When really, I had just done A Thing. There were positives and negatives. Moments where I remembered and relished in my love of dance and was so glad I hadn't let myself move further and further from that world, and moments where I wished so hard that I didn't have to put my small person through so much upset and spend so many of my resources and down time being sociable at the weekend when I am usually recharging. Swings and roundabouts. It doesn't have to be one or the other.

I'm glad I did it, and I'm glad it's over.

I love the hat!

I'm so proud of this hat! 

I decided to make rather than buy because I enjoy knitting and I haven't knitted anything for ages, and I'm trying to make sure I do some activities just for me that I enjoy when I can. So I'm proud I prioritised me rather than just buying. It also feels more personal and special than any old hat and more sustainable than buying (though that might just be my simple perception!).

I'm also proud that I taught myself a new skill. I chose a pattern that I liked but it used a technique I've never learnt before that looks complicated. So instead of picking something else I remembered that I like learning so I decided to give it a go. And then I taught myself! Usually I would think that I need somebody to teach me because it's too complicated for me to figure out and easier to learn in person. But I had a look round the Internet and worked out how to cable all by myself.

I'm proud that I did it well. I made quite a few mistakes along the way but for each of them I managed to figure out where I had gone wrong and what I had done and how to fix it. Previously I've always had someone else around more experienced than me who can fix mistakes or help me fix them, but I found out if I think about it I can work it out myself. I'm a better knitter than I thought, and than I was when I started the project. Of course there was also plenty of whingeing and panicking that Mr Peggy tolerated very well!

And finally, I'm proud it's not perfect. It's good, but it's not perfect - it's not 100% even on every row and stitch, and I didn't reverse the sewing for the turnup when I was sewing it up (my sewing up isn't the neatest either!). So I'm proud that I can take ownership of it and say "Yes, I made this. Yes, it's not perfect. But it's also good, and I like it." I don't have to be perfect and not everything I do has to be perfect. It's a cute, cosy hat, I made it, I taught myself a skill, I did some problem-solving and puzzling and I love the end product, imperfections and all. Plus, it means my one-of-a-kind won't be mistaken for a production line replica ;)

Who cares whether the toddler actually likes it 🤷‍♀️🤣 

(He pulls it straight off, as Mummy helpfully made it plenty big enough for the ever-growing giant. My friend is going to fleece line it for me so we'll see whether that makes a difference.)

Lost in a helicopter (sensory-being/object mindfulness)

Another day, another sensory-being mindful walk. I don't get these so often now - my sensory-being* is usually shared, which is wonderful in its own way - so being given nearly half an hour to myself with the instruction/agreement to use it for a mindful wander was a relished treat.

And the fact that I could take up that opportunity in autumn is not taken for granted. My brain was in a place where I could lose myself in the moment where often I tend to either become overwhelmed because of associations and memories, or to avoid or dissociate for fear of that happening.

So anyway, off I toddled on my mindful wander. My feet found a spiky floor that they enjoyed feeling through my shoes, and then some benches that are pleasant to stand on. However my attention wasn't drawn after that by the Wander Path (oh pants, it looks like I still haven't written a post about that to link to!) like it often is - most times some sight or texture will invite me in to linger but none did. I didn't push it, just wandered on, waiting to see. It was the scent of the fir trees in the end that called me, but what it called me to was a helicopter - the kind that you used to spin in the wind as a child; sycamore seeds.

And so I was lost to the world for a good five or ten minutes, first feeling the flat sides between my fingers - still and moving - the veins of the seed pod making gentle ridges beneath my skin. Inspecting it closely, drawn into the visual pattern, then turning it sideways and seeing the pale, smooth line it made against the backdrop of fallen leaves on the path below, feeling that line between my thumb and index finger, smooth yet sharp, curving round infinitely. The bump of the seed at the end in contrast. Then deeply breathing in to see whether it had a scent of its own: not the sniff you do when you think you want to smell something, or you want to demonstrate that you are smelling, but the deep slow inhale through the nose that allows your sensory receptors to really do their job to the full. Helicopters have a scent. Then I have to say I was thinking about as many senses as possible and did have to find out if it had a taste too, so I did lick the helicopter. I felt the patterns from earlier on my tongue. I became more deeply acquainted with the helicopter, understanding more of its being with every new aspect I experienced and the longer I spent on each. I went back to smelling, and one side smelt stronger than the other. The first side smelt stronger after I licked it - maybe one side smelt stronger because I had licked it more? It felt different between my fingers from when it was dry. I held it up to the breeze, watched it spin to the ground and it was gone. My moment finished, it passed on to its own next moment; the fleeting crossing of our paths stretched out by my curiosity and a suspended moment in time.

*sensory-being explained here by Jo Grace of The Sensory Projects, where I first encountered the concept. Or search my previous posts for my own witterings on the subject and how it overlaps with mindfulness - you can start here.

Difficult ≠ Disaster

Today is a difficult day. Its brings memories. It brings emotional states that are stored in my body and can be triggered by the tiniest of events or environmental factors. It brings many thoughts of what life "should" be like and isn't, and I have to try and remember/believe that the "should" is the wrong way round. 

It's not only today: throughout most of September I deal with some level of the above, but today is one of the worst days. This year I'm primed with the exhaustion of the return to work in a very busy class after the summer holidays and a couple of weeks of teething/coldy-interrupted-toddler-sleep on top of the lurking reminders of the past. The week has been exhausting, throwing a marvellous array of extra missiles my way: busy weekend, changes to plans, being unwell myself, a particularly difficult and distressing night of very little sleep at all, you get the idea. 

Before my work week even began I was treated to a new and wonderful adventure of dissociative experience. By which I mean not wonderful and not a treat. Thankfully not bad in the grand scheme of dissociation options but enough to unsettle things even more. In some ways it feels as though the years in-between never happened. It's a pretty clear clue that my brain is overtaxed and not happy about it anyway.

I pushed through two days of work, questioning all the time whether I should be there: am I doing a good enough job, do I still have enough capacity to do a good enough job at home as well, am I making things worse by being at work, am I making them better, what outweighs what - where is the balance hanging? 

I've tried to do everything right - I've kept talking about it, to professionals, to Mr Peggy, to colleagues, trying to keep everyone aware and in the loop. No surprises, no assuming people will somehow know by osmosis, no "you should have told us". I've put into practise the tips I've been given: breathing, grounding, verbalising, writing, asking for help. And finally, calling it. Existing conspicuously enough to say enough is enough. I need to stop now before a real crisis.

Now I have to sit with the fact that I've done that. And that I'll never know whether I really needed to or if I was just making a fuss and being lazy or self-centred or greedy. That I have made the day more difficult for others by making it more bearable for myself and my family. I have to sit with the thought "what if this is the beginning of a slippery slope?" and the fear that I will become unreliable again because of my anxiety/distress levels. 

Not just accepting but celebrating. He has my back.

But in the midst of all this there is plenty to be thankful for and plenty that is positive. The amazing Mr Peggy who sent the message above this morning and who constantly picks up the slack when I'm struggling (and all the time 🤣), reminds me to look after myself and reassures me that it's OK to. Lil' Peggy who no matter how many times he drives us mad with his hurricane exploration of the world and its possibilities can still soothe me with a momentary snuggle or smile. Colleagues and friends who understand and who affirm that I'm doing the right thing. The fact that I am out and about living my life, being able to be at work in order to have the dilemma at all. Recovery from mental health problems doesn't mean they go away and is by no means linear. I am certainly not at the best place I've been in the past few years, but neither am I at the worst. 

Today is a difficult day but not a disaster. I've listened to myself, I've made choices that I think were right for me. I have been gentle with myself and am sitting with that fact. Right now I am within my window of tolerance and think I may well be able to stay there, which for this day is a best possible outcome.

Fine Mesh Part II: Sensory

Aside from language, I of course receive sensory information through a fine mesh. In fact perhaps this should have been Part I because the sensory world is more fundamental, but as a linguistic being my brain approached it through the linguistic lens first.

In the sensory plane my differentiations are again narrower and slight variation from normal or my expectation results in having to recategorise and my brain alerting me to "Error!". I think the narrowness of filter also means I can perceive sensory input as many, many pieces of data that I must process, rather than a whole or a few items. Or maybe the mesh is narrow because I perceive the input in that way?!

When perceiving through fine mesh, the simple data "I am hearing a sound and seeing a movement" may become "I am hearing another sound as well as the multitude of background noises, and the new sound is made up of differing pitches/timbres/volumes etc. I am also seeing a thousand new pictures a minute as something in my field of vision moves." My brain is trying to work out what all those pictures and sounds add up to and how that aligns with previous experiences to see whether I need to respond in any way.

It's no wonder I end up overwhelmed sometimes - even though I may not be consciously processing each item my brain is working overtime for me. A messy room becomes not just one messy room but 3264 (see "wild exaggeration" below!) items that need tidying.

It is said that autistic people tend to focus on the finer details rather than seeing the whole picture and it's hardly surprising if what we are perceiving is a whole lot of input that makes up the picture, rather than simply the picture! This goes for the metaphorical picture as well - any scenario in life such as a social situation or an event unfolding as well as a literal piece of art.

Perhaps prosopagnosia (face-blindness) is also related here. I am only very mildly affected by this, but maybe if I am perceiving many pieces of information it is harder to put them together to recognise one face. If there is a minor difference or lack of context the data don't all match so the connection is not made. And yet in compensating to over-recognise... maybe there is one feature that is similar and so in knowing that I need to make connections I assimilate the new face to one I know.

I've just realised that this chimes with something Temple Grandin speaks about in her book Thinking in Pictures that I was given for my birthday, and also Donna Williams in Somebody Somewhere. They both speak about fragmented perception and I have only just twigged that they are speaking of a similar (though in Donna Williams' case, much more extreme) idea. To literally see/hear/sense the fragments must be a very different way of being.

Another aspect of sensory input being finely sifted for me is similar to what I described in the previous post about linguistic accuracy. I may see things (or hear, smell, taste, feel etc) in a more precise or attuned way, so I might register a display at school not being straight or symmetrical more quickly than others and be more bothered by it. A speck of dirt on a dish I've washed is detected by my fine mesh and recategorised as "not clean". Perhaps that's why I love asymmetrical designs: errors don't glare in the same way, and an intentional "error" is fun because you meant it (cf. puns, wild exaggeration of numbers, language play like spoonerisms or swapping vowels, mismatched socks etc...). 

I tend to eat one food per forkful because too many flavours and textures at once are overwhelming and I don't taste or feel any of them - in fact it blew my mind when I realised as a grown up that some people would put meat and vegetables on their fork together! It had just never occurred to me to do that! I can enjoy them and taste them better one at a time, so I do. In a sauce, where the flavours should blend together sometimes I can't process them all like that and one gets picked on by my brain and that is all I can taste (usually salt but sometimes a herb or other spice). I only add salt to bland foods such as chips for this reason - then I am not missing out some other flavour by tasting the salt. Ma Peggy and Peggy Toes (one of Little Peggy's Aunties) have extremely fine meshes for taste - Ma Peggy couldn't drink milk from a particular supermarket for several years because she couldn't stand the flavour and Peggy Toes can detect a change in a familiar recipe in an instant, asking what has been done differently.

I don't have perfect pitch but my pitching is closer than average. A slight error in tuning is bothersome. Some CD/mp3 players have a function where the music can be slowed down or sped up and this is used at times in dance classes to match the music to the speed required for an exercise. I could always hear when this had been left on accidentally, even if just by one notch, and often nobody noticed unless I commented (when they would usually discount my tentative comment - which was actually a desperate plea to put me out of my misery! - unless they checked, when they always found it to be so!). Even when it had been set deliberately it caused me constant discomfort to hear the distortion even if slight. My fine mesh alerted me perpetually to the slight difference from normality: "This is wrong".

These are just some examples - I could probably find them for other senses, these are just those that pop to mind first.

As with my need for precision in language, these issues if verbalised can get me labelled as obnoxious, pedantic, fussy, a pain, so again I often try to mask by not raising them. Of course that makes my comments inconsistent and perhaps thus less believable and even more inviting of the judgmental labels. And the mesh or my tolerance for variation/error does change with my stress levels which means sometimes I notice less or am able to mask more.

Well, I've wandered far from the original beginnings of my musings but it's been very interesting! Some of it is just ideas or typing as I think so it might not make much sense or I might change my mind about it in future, but I'd be interested to hear your thoughts and experiences.

Do you have fine meshes or course meshes, or a variety? Do you like your mesh style? Are there other types of meshes I've not thought of beyond linguistic and sensory? 

For me, despite the extra brainspace it takes up in perceiving, understanding and interacting with the world and the anxiety caused by my mesh being different from a lot of people's, the world is tremendously beautiful through my detailed and nuanced lenses and I wouldn't want it any other way. Precision is pleasing, details are delightful and accuracy is absolutely blooming lovely.

Edited to add rambling thoughts:

Could another lens be social? What would a social fine mesh be? Narrowly defined roles, behaviour, phrases, patterns in communication. That is what autistic people try and do in order to understand non-autistic communication and "get it right". But of course there is no fine mesh and we are inevitably lacking in some way. So we wish for a fine mesh because we are fine-mesh people, but the non-autistic social world has no fine mesh.