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.