I’m Autistic … that’s not a label or an excuse, but more of an explanation … but deary me, this communication stuff is hard work!!

So, we’ve made it to January 2021, and in Australia, we are entering some more COVID restrictions, and again, I am forced into this space of having to interpret communication. I find it soooo tiring. It’s hard work – truly.

And as I reflect over 2020 (and ALL that it had to offer), I’m frustrated. Yeah, it’s a strange word for 2020 – since most people use ‘big emotion’ words, like fear, death, anger, etc. But for me, and the small little world that I live in, it’s frustration … but it’s not directly due to COVID. And a part of frustration is anger, and I have met a number of people that are angry at their local or nationally elected leaders for restricting their choices due to a worldwide pandemic. I get that, but I’m not angry at Government for doing what they believe is in the best interest of the majority.

I’m frustrated at myself for not being able to get my head around the subtleties of non-verbal or minimal communication, and yet, I am a grown-a#$ adult! And a middle-aged one at that! I’m frustrated when a supposed friend called me a ‘socialist’ with such venom, when we were disagreeing on the narcissistic leader of the free world, that I am now forced to question the whole friendship. I don’t understand how a priority was put on a politician from another country and his agenda, over a 26 year friendship. I’m frustrated by the sadness this raises in me. I’m frustrated that I can’t just ‘drop it’. I’m frustrated when well meaning people even suggest that as an option.

I’m frustrated that I cannot find (and let’s be honest – relate to and retain long term) a psychologist that get’s the idiosyncrasies of my ever-thinking brain.

I’m frustrated that I am unable to truly share in a deep intimate relationship (not sexual). In a time where I want to be able to let my inner world out, I can’t. It doesn’t feel safe. It’s not like I don’t have friends – I really do. I have a select few amazing individuals in my life I absolutely would not swap – they get me – and this is the frustrating bit – they get me only as much as I can let them! But with all the trauma I have experienced over my lifetime, I just don’t really let people in. Married and divorced twice, I become what people need me to be – and I am really good at that – and I lose myself in the process. And in 2020, where physical separation was very real, and us mere humans were forced back into our skill set of being able to ‘read people’, I failed miserably, and the frustration continues to build.

2020 also meant I chose (partially), to finally lose the relationship with both of my parents and four siblings – yeah – nice big one there! This continues to be a difficult choice, but I also struggle with am I being too harsh? Frustrated that I am trying to raise a child with a healthy sense of family, and yet cannot make it happen with my own extended flesh and blood. Frustrated that I can’t just say to a taxi driver (who I can’t tell if he was trying to be funny, build rapport with my 6yo daughter, or flirt with me) that making a comment that Mummy should give you a sister or brother, is super-inappropriate and I am left genuinely speechless. I’m really frustrated that I can never really ‘turn-off’ the tap of my over cautious, ever-thinking brain.

I was in a meeting a week ago, when a person who I consider lovely and quite ‘switched-on’, says to me “I think you took my comment too literally” Really?! Minus a few expletives, I reminded her that unfortunately for her, I am on the spectrum, and that behaviour is super-common! And here’s the frustration – I look functional to the casual observer.

Even someone that doesn’t know me, and is part of a group that I am involved with, messaged me to say that rather than pay for a professional to give her appropriate information on a topic that I am a little knowledgeable on, she’s rather use me – she doesn’t want to waste her money. I’m frustrated that I don’t feel confident enough to say “Enough!”

And then there’s the constant frustration that I feel as I write these words, that I sound like I’m needy, a victim, whingy about struggles I have with communication on a public blog site which takes a decent grasp of the english language to put words on a page in a readable form … aargh!! And yet, can’t fill out a form without having an anxiety attack, because it’s too hard to process.

And rather than find the skills to ‘repair’ all these lost relationships, I’d rather just not. In amongst it all, I have a base view that because of a history of abuse, I have attracted a lot of abusive people into my circle of influence.

But then I do what I really do best – reflect and analyse (yeah, it’s frustrating that I can’t turn that one off), and I realise that it’s not due to a lack of confidence, the potential loss of a friendship, inability to share my inner world, past abuse, victim mentality or any other crazy reason I’ve come up with to explain this frustration I feel. Simply put, it’s empathy. Too much of it.

I don’t send the text to the needy group person because I think “English isn’t your first language, and you might not be saying what I have understood – it would be mean for me to just say no to responding to your late night messages.” I don’t send a message to the friend of 26 years because “it might hurt her feelings, and how would she explain her sadness to her children and grandchildren”. I don’t ask advice of my dear friends when I really need to “because they have needs too, and what, do I think I’m special enough to interrupt their much-deserved down-time?”. I say yes to therapists that aren’t the right fit for me “because they are doing the best they know how”. I allow myself to be hurt by my family “cause they must be hurting too”. I allow the taxi driver to speak out of turn “because I don’t know what kind of day he’s had, and wouldn’t it be better if we gave him a good day?” And to the work college “she might have had a tough day, and my words might be the reason she takes tomorrow off sick, impacting a whole company”.

Truthfully then, I’m still frustrated, but it has less to do with 2020 and COVID, and more to do with how I navigate me. And unfortunately, without having supportive adults in my childhood, and understanding therapists in my immediate future, I get to figure this one out on my own. Communication advice welcome: apply within.

It’s 10.30pm on a weeknight, and my child has been in bed and asleep for a good couple of hours – and it’s my time to chill – it’s my time to zone out with my self-indulgent “netflix and chill time”. I will clarify first – I am on the spectrum (Autism, that is), and so for me, the term “Netflix and chill” has NO other meaning – I disengage my brain, and watch Netflix. Apologies to the teenagers – I am also a single Mum in my mid-40’s!

Tonight’s 90 minutes of zone-out is about a clinical psychologist giving dating advice online, and securing a book deal – but just before she presents her fiancé on camera, he dumps her, and a childhood friend picks up the role of fake fiancé, to ensure she can secure her picture perfect career and life. There is a scene from the movie that struck home with me though, after a conversation I had today.

Earlier today, I was enjoying some time off my feet (literally, the podiatrist was working on them), and we were getting into one of many conversations we have. Let’s call him Peter, the Podiatrist – we were talking about domestic violence (and no, I don’t seem to ever recall how we end up getting so deep into conversation so quickly), and Peter asks me “so if you had the political power to change something with DV, what would it be? And where would you start?”

WOW! What a question! I’ve spent the last two years actively recovering from domestic abuse, so I have some thoughts on this – but that’s not where I am going with this blog post. The first part of my answer to Peter, related back to the scene in the rom-com that became a bit of a trigger. We have to change the narrative from the beginning

That means identifying everything from the bias’ we have, how we teach what love is, the language we use around children, the stereotypes we have around gender – it’s so big and cumbersome, it’s a bit like the “eating an elephant” analogy – one bite at a time.

The scene in the movie: Kate (Psychologist) is stating that she doesn’t know what the future with Luke will look like (Fake Fiancé). Future Mother-In-Law says “Well, you don’t know. That’s love”. MIL goes onto say “I mean, it’s the ultimate leap of faith. Is it scary? Yes. But when it’s right, and when you love someone enough, all those little things … they just go away.”

Full disclosure, I have been married and divorced, twice, so I would say I’ve got a little experience in that “relationship goal” we work so hard for in our late teens and twenties. We ALL know that rom-coms are not reality, but the issue that I consistently feel I am responding to is that “a goal of life is to be in a committed relationship, and that it comes in the form of a husband or wife”. That thinking has the potential to have us losing sight of who we are and what we actually want from our life – potentially blurring the healthy boundaries we need to keep ourselves safe.

To unpack the scene from the movie further:

• “you don’t know the future – that’s love” No, that’s not love. Not knowing the future is very normal – none of us do. But take a look at someone’s actions in the moment, and you have a clearer picture of what your future with them will look like. Linking natural uncertainty with love will get you very confused (and possibly manipulated), very quickly.
• “It’s the ultimate leap of faith” Feeding this line into the growing brain of a teenager regarding their relationships, sets people up to ignore their gut feelings and to not read the evidence that’s being presented to them.
• “When you love someone enough”. NO – ultimately people have to take responsibility inside relationships. I have held onto this view for a very long time, and I recall making the statement akin to this belief prior to both marriages – relationships aren’t one sided – you cannot simply “love someone enough”. If you think about it, you cannot ‘love someone enough’ to get them through a drug addiction (many well-meaning parents have tried that with their children) – ultimately one of the AA steps is that the person with the destructive behaviour, ultimately needs to take responsibility – you just can’t do that for them.
• “all those little things … they just go away”. No, if you feel that they have just ‘gone away’ you’ve probably just given into a boundary. eg, Just because I like Dolly Parton, does not mean I like all country music. By believing this lie, or feeding it into our head, we literally are minimising our own likes, dislikes and experiences. Where oh where did our sense of self go??

So where do we start the conversation on abuse? – literally ‘anywhere you can’. Abuse is a cycle, and some of the limiting thoughts and behaviours are generational. Be prepared not to hold all the answers. Be self-reflective in your thoughts, and teach the next generation to be the same way. Question gender norms and biases. Support programs in schools and the community that have capacity for change. Be brave enough to think and be different.

And know that movies are escapism, but that doesn’t leave us without a voice to have an opinion on what ‘information’ each story tells us. And the most rewarding relationship is the one we ultimately develop with ourselves.

Sitting in this park, there’s these massive old Silver Gum trees twisting their way easily 50 metres into the sky. Looking scraggly, yet majestic, and steely blue and silver grey colours curling their way around 3-4 metre diameter tree tree trunks. Bits of bark ready to fall off at the slightest hint of a breeze, but yet just blowing calmly as the breeze increases enough that I put on my jacket, and pick up my empty coffee cup that’s blown over.

The stories these trees could tell – the families of animals they have housed, the storms they have weathered, the amount of people that have become introspective over their absolute beauty – and still they just keep growing. Not impervious to impact of the world around them. They have knots in their trunk where branches have been taken away due to whatever force of nature decided to hit at that growing stage. Even the whole centre of one trunk is completely rotted away, right next to the branch where clearly a chainsaw has been taken to it for whatever human-determined purpose.

As I contemplate that thought, I’m left with a different thought – these trees have been tended to. Not told what to do, not directed to grow, just given the space to do what they are designed to do, and supported where necessary. Branches being removed occasionally, nutrients added to the soil to support the trees base, bark cleaned up off the ground, and then just letting nature take it’s course. That thought that these amazing, majestic, but imperfect trees have been tended to, really does lead me to think that the hardships that change us irreversibly, actually can have the power to make us unexpectedly amazing! That might feel like a leap in thinking, but these trees really are phenomenal in their intricate beauty, and aside from the Huon Pines in Tasmania and Giant Redwood Trees in California, really are favourites.

Now I just need to find the space to tend my own self, make peace with my history and enjoy the unexpectedly amazing!

I bought a ring today – one that I really like, for US$20 – on what is the 8th year Anniversary of the surprise engagement to my second husband. Thing is, the divorce from said husband is about to be finalised through court. 

The irony of this situation though, is he spent 2 years asking me what type of ring I liked, and then surprised me with a ring that was soooo small it didn’t even fit on my little finger, and with sapphires! – not my birthstone, or actually a colour I am drawn to – but it is a stone that he liked.

He had found some sapphires and other stones gem fossicking years before he met me, and some of the green stones were certainly pretty, but he didn’t even get a ring made with those stones (apparently we couldn’t afford it). 

And now, just today, I have bought a silicone ring (Enso Rings) – yep, silicone – because now that I have space to know who I am and what I really like, it’s so totally me! My last engagement ring, I paid to have it repaired twice (I still own it, and it’s currently broken), because I am a size V in a standard ring, and it had to be resized up from a K – so of course, there’s a major weak link in the ring. And of course, I’m classicly clumsy, so the ring would crack or bend in the added section – something a silicone ring will NEVER do! And honestly, if for any reason, I do take it off and misplace it, I won’t feel bad for losing it – it’ll be a sentimental loss, and I won’t have someone making me feel bad about it. 

And the other irony about wearing a silicone ring is that it is effectively a plastic – and I enjoy recycling and repurposing stuff! Makes no sense to me – but I’m ok with that! 

So I’ve spent a couple of days now in pain with my back spasming and I feel like no one is available to help. Is that because I’ve cried for help when I haven’t needed it? I received NDIS funding 3 and nearly 1/2 years ago and in that time I have had a myriad of support workers come in and help me. So much of that help I’ve had to almost fein that I’ve needed it – not in the way you think though. And not as a hypochondriac, but more in a use-it-or-lose-it fashion or even in a proactive vs reactive response. 

I’ll explain that a little further – some people go to the gym to build muscle, some people go to the gym to do cardio and stay healthy and fit, but those with chronic illness generally go to the gym to build our core strength so we don’t hurt ourselves. But to watch us at the gym is interesting to say the least, as we tend to do these really light exercise as almost Pilates or yoga style, to build our core strength so that if we fall/when we fall, we can pick ourselves back up again. How this presents after 6 or 12 months is that our bodies don’t look like they’ve changed – and in a way it looks like we are pretending to go to the gym. What we’re actually doing is being proactive … 

I think this is why I find it so hard to do my personal emergency plan. When I actually go ahead and think about it, who do I really trust that’s going to be there at the drop of a hat (in the case of an emergency)? There literally is no one (not that I have no-one that supports me, just that there is no one that drops everything and responds, like ‘ideal family’ might) – I’ve either said no to them due to my impossibly high expectations, or they’ve got their own things going on – both are likely and reasonable. 

This leaves me in a position of needing to proactively build my support network – and if I’m honest with myself, it’s where I stop being proactive. It’s why I end up in this ugly space of “am I crying wolf?”

Communication with purpose is tiring, and of course, there’s the little winey voice that chimes in and says “why do I need to put in all the effort to build relationships so I can have supports when my body or mind fail?” Communication with purpose is tiring, because you then spend a lot of time believing that relationships aren’t real, and people are just being nice to you because they feel sorry for you. And then I cycle back to “is the only reason I have a friendship/relationship is because of their future use to me?” Bit of a narcissist way to view relationships, right?! 

But then again, having NDIS controlling your access to supports you will need in the future, does tend to lead to this type of thinking. It’s the kind of thinking that is supposed to lead you to anticipating future need. So why write this post?? Full circle thinking – I am consistently surprised by the need when it arises, and not-surprisingly, it’s always damn inconvenient!

So, am I really crying wolf, or am I just a little bit overwhelmed by the basic conundrum of ‘unexpected happening’? And given that we are globally still amist a Covid-19 pandamic, I suspect all that really happened, is that I was thrown by my body doing something it hasn’t done in a while (but I have MS, and it does do weird things), and due to Government regulations, I am unable to take my normal path to recovery! 

There’s not too many times in life, that an inanimate object can bring tears to my eyes, and warm my soul. But today I received delivery of one such object … A beautiful handmade black metal UFO pentatonic drum.

The very nice, but completely unaware postie dropped a box at my front door at around 3pm, without a care as to what might be included. After locating a hammer and chisel to pry my new self-love gift from its well-secured wooden box, revealed was this oddly UFO shaped metal thing – exactly what I was expecting, but somehow infinitely more precious.

Steel tongue drums, or their variant names, haven’t been around all that long (compared to the history of time), but the concept of banging on something to make a melodic sound has been. I’m totally awed by the concept that I, the human with little to no musical skill (we can unpack that issue later!), can make inspiring sounds within seconds of having this amazing drum in my hands. It’s a truly beautiful and gifted thing, to be able to sit and resonate with the vibration of sound coming from a modified propane tank!

The tears may be from being in isolation (I doubt it – I was a happy hermit before covid), or from my randomly emotive MS state, either way, the vibration of sound seems to stir up the connective tissues of my body, and feels healing to the touch. All the 8 notes on each of the ‘tongues’ are tuned together, that no matter which non-talented way you bang on them, the results are soul satisfying.

And the biggest benefit to this little UFO? … The value to a 5yo who senses the world very differently – she can bang on this thing till her heart is content (you can’t break it – it’s a steel drum!), and the vibrations reach all the way to her little toes. I think our UFO is going to be well loved for a long time to come!

On a practical note, steel drums can be found under a number of different names, and I purchased mine from the inspiring and gifted Alli, and all her musical offerings can be found at Oh My Musical Goodness online.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton