Unsurprising Surprise (will I ever learn?!)

I spent several days just doing nothing. By which I don't mean nothing, because that doesn't exist as an option any more, but doing the bare minimum of keeping myself and Baby Peggy fed, clean and safe. Not doing anything from my growing to do list or even able to contemplate doing any of those things. Mentally absent from life and feeling like I'd missed those days out. I can them non-days - days where I just exist.

Gradually I've started doing one or two things from the list each day because I know I have to and it helps keep the sense of overwhelm at bay. During the past couple of days when I've been doing that, I have noticed that my mood is not good. I'm not low on sleep but I feel as though I am. I am irritable, I feel low, little things bother me, sensory issues are worse, everything feels too much, I can't get my head around thinking about anything. 

Because I'm used to just carrying on and I don't get breaks any more I didn't anticipate the end of term being hugely different from term time, other than that the routine is different because I entertain a baby for 5-7 days instead of 2-4. But my body/brain seems to remember that end of term = crash time, so here we are. I just hope it gets back on board in time for me to be present and enjoy our holiday next week.

Note to self: assumptions are not useful, changes of routine are always unsettling, perhaps work takes more out of you than you realise. The interplay between mood/energy levels and life factors such as routine, change, stresses and stressor, hormones, social interactions and countless other factors is complex. I can look back in retrospect and think "I should have seen that coming", but I didn't, or not with this intensity for this long. What I can do now is notice, try and be kind to myself and allow recovery as much as possible, and learn for next time. 

365 Days

Did you know we had a heatwave at exactly this time last year too?!

Sorry, not an autism or mental health or sensory-focused post, just a lil reflective one.

I remember because I was in labour at this very moment. I remember being uncomfortably warm as I waited for my induction, but for the next 12-17 hours being more preoccupied with other things! And then being slightly worried our 9-hour-old baby would either melt or roast on the car journey home as our air conditioning wasn't working. He survived, and we survived the very sweaty days of closeness that followed.

And we all survived the following year, because here I am writing about it as the huge child snoozes blissfully unaware of any unusual significance of the occasion of his afternoon nap on 16th July. 

We more than survived. Our lives are so much richer for having Baby Peggy in them. We learn from him every day and laugh with him every day.

I am proud of us. There are parts I am not proud of - moments, patterns, aspects I could, would and should change. And there are many things I accept or am learning to accept that might not be ideal but are also not the end of the world. Telling the difference can be hard.

But my overarching awareness today is gratitude and wonder. To be here today with our lives as they are right now - a whole year of this boy - feels miraculous.

I am thankful for the joy he brings every day.

I am thankful for the snuggles.

I am thankful for the giggles.

I am thankful for the relationship he has with me and Mr Peggy.

I am thankful for his growing independence.

I am thankful that he is so settled and well cared for in his childcare setting and that he is developing his own friendships there and experiencing such a wide range of opportunities that he doesn't get at home.

I am thankful that he sleeps much better at night now.

I am thankful that he has such a loving extended family.

I am thankful for all of the friends, family and professionals who support us.

I am thankful for the time I get to spend with him watching him learn about the world and himself.

I am thankful for an infinite number of things! That's not to say it isn't incredibly hard at times. It absolutely is. There are days when I am unrecognisably far from the parent I would like to be and where I feel despairing that he has a parent like me. On those days it's upsetting that he trusts and loves me because he really shouldn't. But mostly I can see a balanced view - undoubtedly imperfect, but not wholly terrible. Sometimes we do just fine!

And I'm just thankful that I've had 365 days to try at it and 365 days of memories to treasure.

Happy First Birthday little one ❤️

Back-up Voice: Non-verbal Communication

Another one I thought I'd written about but can't track down so maybe I've only mentioned in passing.

When you think of non-verbal communication you probably think of gesture, body language, eye contact and so on. I'm not here to talk about those, though perhaps I could do one day. I want to talk about what we do instead of talking, not what we do as well as talking.

Generally I have low support needs and I live a largely independent life. I tend to think that most people wouldn't know I was autistic unless I told them or I spend a long time with them (who knows whether I'm right or wrong about this of course...). Or, of course, if they meet me when I'm stressed, distressed or overwhelmed.

Suddenly I am recategorised in the onlooker's mind. I act unusually. They find me unpredictable. They don't know whether I may be a danger to them, or to the environment or myself. And here is the big problem: I can't talk.

So they don't get an answer to their questions, and they don't even know whether I'm hearing them or dissociating (for reference, I don't dissociate, so I am most likely to be hearing you). They ask more and more questions that I can't respond to; they start making ultimatums (ultimati?! ultimatae?!) or trying to get me to do things I can't do or that won't help. I get more distressed, it takes longer to deescalate.

The thing is, once I start to calm down, which I can often do well by myself with time and space, I begin to have access to communication again. When I'm in high distress I can't communicate at all, but as it comes down (or if I can catch it on the way up) things start to return. The trouble is, speech is often one of the last.

So alternative methods of communication are key. I haven't cracked it completely (if there is a finished point, which I highly doubt!) but I've learnt a few tricks that I thought I'd share.

One of the first things I'm able to do is nod or shake my head in response to a yes/no question. This is really useful because it tells the other person I am hearing them. They immediately feel calmer because a connection has been established.

Once my body begins to relax I am often then able to sign. Because of my work I know a little basic Makaton and fingerspelling. Within my work setting I have managed to convey the person they could fetch to help me (did take a while for them to realise I was signing, but they did and then worked in out from the initials!), but it does have its limits - in the general public not everybody knows any signing. Or in a situation like I found myself in last week, they may not be able to see! I was behind a door and because my eyes were closed I didn't know that they only had space to open it a crack so they weren't even seeing my increasingly vehement "quiet time" signs that I thought should be understandable to Joe Public...

As I deescalated further I eventually thought of typing. Once calm enough to open my eyes I wrote a simple message on my phone: "I'm autistic, I just need some quiet time." Credit to the staff at the restaurant, they were incredibly kind and respectful throughout the incident and the evening, and at this they straight away told me that they would close the toilets and come back and check on me in five minutes, which they did, by which time I was up and ready to leave and able to thank them quietly (they had only appeared once I was in recovery phase anyway - the whole process usually takes a lot longer).

In the past I have also used pen and paper to communicate in this way. I think it is slightly more difficult than typing but is another tool in the box.

And of course my sunflower lanyard, if I am wearing it, can explain to the onlooker a little about me ie. I am autistic and might just need some space. It also has details of how to support me in distress if I showed them the right card.

Also to note, sometimes as my speech returns it comes very quietly. At times I can mouth the word with a sign or a whisper will come out. So if you pay close attention you might get some words before normal volume is reached.

I'd be interested to hear from other people who are nonspeaking or occasionally nonspeaking, have situational mutism etc - what are you back-up voices? What tools help you and have you found anything especially reliable for interacting with members of the general public?

Tired

I don't want to fight any more, I'm exhausted.

The landscape around me feels bleak despite the warm (finally not wriggling) bundle of comfort in my arms.

But there is no way out. 

My options are to fight or to abandon all that I love in this world.*

Well, it's a little more complicated than that - I could live a half life that involves both fighting within myself and neglecting my husband, son and pupils/colleagues, as well as not enjoying any of those relationships fully. To be fair, even giving in and letting the darkness win involves fighting anyway. Or I could try and delay one by doing the other and just prolong the anguish. But ultimately it boils down to resigning myself to what my head says or fighting back against it.

Abandoning my family again can't be an option. So if I can't fight for my own benefit at the moment I need to constantly remind myself of the implications of giving in. It's confusing because making the "right" choices feels more like giving in, and doing the "wrong" thing feels like what I should be doing. I need persistent reminders that not listening to the darkness is not the easy route of giving in but the correct, responsible, hard grind of making sure that I can fully perform and enjoy my various roles in life. None of the Peggies deserve a half-me.

When nearly everything inside you fills you with shame and disgust at your "right" actions it certainly feels like a bleak battle. But I know it gets better. I know that my brain will eventually see the "right" way round again - even though the very thought of that switch fills me with alarm and horror right now. I have been round this loop enough times to eventually try and trust what doesn't feel true: the words, warnings and examples of those around me remain the same as my mindset changes, and I have to trust that they are truth and not poison.

It's relentless and it's exhausting; please bear with me.

These two Peggies are my world. Worth fighting for.

ETA: After some much-needed quality time with my trusty Rainbow Peggy I am feeling strengthened in resolve and hope. Still exhausted and still back to front but resolved to pursue the path I am told is right.

* Please note - before you all start panicking, I am not suicidal and have no intention of leaving the world; by abandoning I mean allowing my life to go down a path where everything becomes skewed, where I am not able to be there physically, mentally and/or emotionally for those I love and for myself, and where destruction follows me bringing pain and brokenness to the people I care about.

All change!

So. Much. Change. When you have a baby!

Not surprising, yet incessantly surprising. The trouble for poor Baby Peggy is that it takes me a long time to adjust to change, so try as I might to keep up with and anticipate his ever-developing needs, he often ends up in slightly-too-small clothes for a little while until I get my head round swapping to the new size.

Put away one size of clothes, get out the next. Out of the baby bath into the big bath; get a bath mat so he doesn't repeatedly drown himself by trying to move. Out of the bedside crib into the cot. Lower the cot base because he can sit himself up (which he did at 4am!). Baby gym away to make space for crawling. Get a toothbrush and toothpaste for the teeny gnashers. Plan everything he needs for going to the childminder's. Solid food. Solid food twice a day. Solid food thrice a day (good word, thrice). Favourite toy changes every week or two - keep up if you want to keep the peace.  Move changing mat to floor to avoid wild launching of self. Acquire shoes - baby suddenly wants to stand up All The Time and it is often rainy outside.

The "routine" is constantly evolving - no sooner than I get used to the fact that the wake window is two hours than it extends by half an hour. I reckon it takes me about two weeks to adjust and it changes after three or four weeks! We settle into a pattern for about three days, and because my brain loves a pattern it is constantly searching for one, but once it's found one we change to a different one! Needing less milk because we eat more, then needing more for a growth spurt, then back to needing less again, nursing strike, ravenous after nursing strike, etc etc!

Trying to guess whether each change is permanent or temporary. So much unknown and unpredictable. It's exhausting and probably contributes to my overwhelm because the world can feel so chaotic. But I wouldn't trade it for anything, even my sanity which is a little intermittent! This little unpredictability-menace is the best thing that could have happened to me right now and I love him to pieces. Even when he's a constantly-changing contrary Mary. 

Scrumptious unpredictability-menace loves his guinea pig friends now 🥰

Where's the Feeling?

For somebody who is quite sensory-aware, naturally mindful and pays attention to what their body is telling them, I am remarkably useless when somebody asks "what did it feel like in your body?"

My new therapist ask this question a lot - it is an important part of the EMDR we will be doing - and I find it really difficult to answer! I can be bad at identifying emotions, though I am improving at times, but sometimes I'm even worse at this, which surprises me.

Is it because I don't notice it? Is it because I can't identify it? Is it because I can't remember it afterwards? Is it because I find it difficult to communicate it verbally?

During my difficult week I have been trying to pay good attention to where and how I feel different emotions and responses in my body, particularly the past couple of days since I saw her.

With some emotions it has definitely been a case of not thinking to pay attention at the time - when the old amygdala's partying I tend not to be paying attention to my precise inner sensations. At other times I have been able to notice some clues, for example my shoulders being tense and raised up, a sick feeling in my stomach (usually worry), fidgety hands or hands that want to hold something, a mouth that wants to smile.

Emotions have even been mapped in the body with thermal imaging- picture from here.

But that's pretty much all - I spent a good twenty minutes yesterday thinking "I feel calm, content, relaxed and happy, what does it feel like?" and all I could come up with was slightly smiley and it's easy to move (if that even counts!!). Does my body just not feel feelings in a very physical way or am I spectacularly bad at figuring it out?! 

Any hints or tips or do you have the same experience?

A quick Internet search for "anger in my body" or "where do I feel things in my body" bring up a variety of resources to highlight body cues for emotions - I'm going to keep paying attention and see if I can work out whether it's my awareness or my body that is making it more tricky to figure out - or maybe both. And I'll be writing it down to make sure we don't come a cropper on the "difficult to communicate it verbally" thing. Interoception differences and alexithymia are both known to correlate with autistic neurology so I probably shouldn't be surprised by this whole business!

Skillz and Tooolz

Skills I have used this week, in no particular order. Some of them are old faithfuls, some are new trials or discoveries, and some I have intentionally resurrected as the usefulness of going back to things that have helped in the past has been highlighted to me. Sadly a few are not currently available to me, like ballet, massage, and probably others. There are undoubtedly some I've missed, but a good few here to give you some ideas. If you want more information on any of them just give me a shout in the comments or by direct message.

Trying different intense "push" movements instead of destructive physical actions

Writing (CBT and blogging and general brain dumping)

Going in my nook

Old skills such as emailing updates before sessions to help me talk or make sure I stick to my plans

Talking to people and verbalising my head contents

Not giving space to thoughts/urges that are untrue and unhelpful, even if they feel like they are true and helpful

Reminding myself of why those things aren't true and reasons why I do life differently now

Allowing amygdala to party when it really needs to, but not in a destructive way

Sensory walks - touching and smelling the conifer leaves, tiptoeing along the kerb etc

Tai chi

Paying attention to what my body is telling me and how it tells me that (eg. I needed to wear my noise-cancelling headphones the whole time I was in town, not just in noisy shops. I was holding the ends of my sleeves and putting my Tangle in my mouth - seeking tactile and proprioceptive input. My stomach had a sicky feeling of anxiety. I wanted my hood up at the beginning of my sensory walk - wanting to be enclosed and reduce sensory input. My shoulders were up high and tense.)

Achieving small tasks such as cooking a meal, booking an appointment or sweeping the kitchen floor

Stretching/moving my body

Sleeping

Noticing how many things I have actually coped with and why things are difficult right now

Putting on upbeat music

Soothing rhythm breathing

Safe/calm/happy place visualisation (! Bet you never thought you'd hear me say that!) and tapping

Playing games on my phone

Jigsaw puzzle

Colouring

Reading

Playing mindfully with Baby Peggy's toys (and Baby Peggy of course!)

Cuddles with Baby Peggy

Message a friend

Fidget tools eg. Tangle