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!