Today’s story started from a text from my sister – it’s Australia Day, a public holiday, and in Queensland, vulnerable kids and those of essential workers went back to school this week.  My sister rang me on Saturday just gone, and borrowed some money (yeah, not getting into why I continue to say yes), however it was to help her get my nephew back to school on Monday.  So he attended school on Monday just gone, got sent home on Tuesday (yesterday) with a runny nose – the Omicron variant is rampant in most major towns and cities along the eastern seaboard at this point.  She then texts me with news that one of her friends that she has seen recently, has Covid, and has come up in a rash.  She herself has started a new job, picking fruit, and has also come up in a rash, and asked me what she should do.  So, at this point, I am double boosted – yep, you read that correctly – our Government is pushing for the country to get boosted, and I have been down that path twice – but in all fairness, I have MS, and getting Covid, could impact my life significantly.  So, when I give her the advice that seems most reasonable, and what other reasonable people would have told her – which is go and get a PCR test – her response was to blame the rash on stress, choose to keep her son home from school for the week, and complain that she is no longer in the industry that she used to work in.  There is no emoji that describes the expression I have! 

I feel sad that no matter what I say, there is no way to explain the impact that her narrative has on both her and I.  I’ve said this before, I can’t offer a labotomy, and cannot undo the damage of a lifetime of trauma.  I do feel that the only option is the sad path that others have taken – walk away.  Is there a path for a trauma-bonded victim?! And the best words I have to explain all this is sad?!

On a different note, Dylan Alcott has just won our Australian of the Year – the first time in the Award’s 62 year history that a Person with a Disability has won the Award! I look forward to the year of conversations that he will undoubtedly create.

Do I forget the fun stuff that I’ve done over 46 years, or is there just so much trauma, that it messes with the Neuro-transmitters, or maybe just more of this flower opening realisation that I have spend soooo long on the destination, I miss the journey – EVERY STEP OF THE WAY!?

As I’m sitting at home on an uneventful Saturday morning, although silently anxious since Advent is only 17 days away, and I’m not even close to being ready, a reminder comes up on my google photos, which leads me into the the usual deep-dive, time wasting rabbit hole of doing everything except what I sat down to do – and I see a photo. A photo that reminds me that when I was once far braver than I am inclined to be now (thanks to having a 7yo), I stood at the edge of an active volcano for hours, and and marvelled at the molten lava spewing from the earth in its uncontrollable, yet mesmerising form. Yeah – I willingly climbed an active volcano, and smelt that sulphuric acid for hours, and took days to get that ash from my hair ears and nose. Lots of people have done this, but of all the people in the world, and certainly of the one’s that I’ve met, not so many. And yet, when asked what cool stuff I’ve done, my brain fails to remember that I have even had this experience. 

10 years prior, I jumped out of a “perfectly good aeroplane”! … I was in San Francisco at the time. I’ve walked the streets of Paris at night, being comfortable with the culture and language, despite growing up in a very small regional town in Australia. I’ve done a New Years Eve in Sydney as a single person on a blind date, and caught fresh tuna in the ocean and cooked it on a beach … yeah, I’ve definitely enjoyed moments.

And yet … to get my brain to recall any of these lovely memories, it has to process the other stuff. Who I was with, why I was there, what happened beforehand, or after – the stories or narratives we tell ourselves. In the autobiography of Clare Bowditch “Your Own Kind of Girl”, she remarks that this book is about the ‘stories we tell ourselves’. My interpretation, it is the changing of the narrative. 

I’ve been on the theme of ‘my journey’ for a little bit now (ok, for a lot, since it’s in the Bio for the page), but if there is capacity to change the narrative, the ability to remember the fun stuff, what’s the link for me? 

There is the ever-grinding remark from the psychologist … mindfulness … or grounding ourself to the now. I also wonder if it’s in the sharing. Being brave enough to truly be vulnerable with another person to share … and be shared with. 

So no, I don’t think I’ve forgotten my life over 46 years – it’s just seen through a different filter. Yes, there is trauma, and a pretty decent amount of it, but time, and and active choice to heal is part of that journey (not a destination). There is also a willingness, although it does take a moment or two, to look at each part of the story with a new realisation. And really, there is constant forgiveness – for all the things I’ve said, done, thought, to me and other people. 

It’s a really ugly moment when you realise that part of the reason you don’t tell a story, or even just forget it, is you have no way to spin it in your favour. But eff, what a beautiful trusting moment is shared when you become brave enough to do that – but that can take decades. 

And now, it’s off to enjoy a delightfully “who know’s what” kinda day – I don’t get many of those. 😁🌈

Likely lots of people have described their experience of having a neuro-diverse brain, but with the recent purchase of the new iPhone 13, comes lots more notifications to be ‘healthy’ – my phone and watch telling me to breathe, wash my hands when I get home, drink water – you know, all those things that are supposedly good for us, but who really has time for them? – We are too busy LIVING! (or more precisely, existing begrudgingly from one societal expectation to another).  

Aside from my slightly dark view of being above ground (ok, I’m not really that pessimistic, just some weeks feel a little that way – a motivation behind this piece of writing?!), I have got quite a connection to Apple products, due to their accessibility options, and effective support of disability.  I also am consistently (and in my opinion, annoyingly) encouraged by my psychologist to be more ‘grounded’ – apparently it helps in overcoming some of the mental health barriers.  

So today, on a day that has relatively high anxiety due to some expectant negative news from the Doctor early next week, I thought I’d take the advice given … It’s worthy of noting that my Apple Watch has the ‘Breathe’ icon listed in the computations of the watch face, so all I have to do is press the button … 

I pressed the icon, chose ‘Reflect’ (1 minute), and this happened … displayed on the watch face, it reads:

Bring to mind something you are passionate about. (Begin) … Really, just one thing? What the hell is the Apple Watch trying to do to me? No thoughts come to mind.  Immediate freakout – am I passionate about too many things, or nothing at all?  Am I only passionate about crap that other people are interested in, since I don’t feel like a like I have a sense of self? Nah, negative self talk is going to be annoying, even to me here.  Hey hold on, maybe I should do an ECG first?  How cool is this feature? I love the iOS 15 update!  Ooh, I wonder if the ECG heartbeat can be printed out or emailed to the doctor?  Hmmm, do I need to order more printer ink?  Oh, I’ve got so many emails to print. I’m nearly up to 100 emails again. Crap, I was supposed to ring my friend earlier. Aaah, might text tomorrow, so I can let her know about Monday. Oh, god I wish Monday was finished. Ah, that’s gonna suck having to put in the complaint about the anxiety attack. Eff. I so don’t want to go.  Why can’t doctors just email reports to you. Jeez.  Ooops, what the hell am I supposed to be doing? Why am I pretending that I can even be mindful? Are people lying when they say they do meditation every day?  How is that even poss – What was that noise? What is my child up to now?  What is she screaming about?  Aargh – I just want 60 seconds to myself!  Who am I kidding – this is going to take more than 60 seconds … 

Take a breath.  Start again.  Whoops, just noticed I hadn’t actually pressed the ‘begin’ button.  OK, pressing that.  Nothing happened.  Literally sat and watched the same words on the one and a quarter inch screen of my watch for 60 seconds, and then it came up with the next question … “Enjoy how it helps you feel fulfilled“.  I want to cry right now.  Eff – I can’t even effectively reflect!  

And then it had the hide to mock me with “Carry this sense of fulfillment with you“.  Go jump, Apple!! 

I’m sure it would be comical if I wasn’t trying for real. And then a quote by someone famous comes to mind – “If at first you don’t succeed, try and try again.”  Aaah … ok.  Thanks Robert the Bruce, King of Scotland for your wise words.  Because the truth that became obvious in that sixty seconds of thought diarrhoea that I have just endured, is that I can reflect.  Sure, the tangents that exist in those sixty seconds of neuro-diversity is a little eye-brow raising, thankfully still PG, but so beautifully honest and raw – once I take a breath. 

Because if you’ve just read what I’ve written, at the speed to which it happened in my brain, you’ll understand very quickly that the important part of ALL of it is … take . a . breath .  A lovely teacher once told me that the benefit to mindfulness is that it creates a space between thought and response.  I like this view more than this idea that I should be “grounded in the present”.  Then again, maybe the real reflection of today’s sixty seconds is that there is a valid space for both.  Having a mind that doesn’t do linear thoughts easily, maybe success and a sense of fulfillment is achieved by realising that by being brave enough to practice stopping for sixty seconds each day, and just taking a breath, appreciating the space that’s created that allows for a response, and then focusing on the current moment, I can see that I am passionate about … neuro-diversity (oh, look at that, brain … carry this sense of fullfillment with you!).  I am definitely passionate about allowing others to really know and appreciate the rainbow of the human condition.  

I now encourage you to find sixty seconds … 

Stardardly, any piece of writing that includes continuation in the title, would be a follow on from a previous article, but this one cannot be.  It cannot be, because self-awareness came after – but before pressing publish on the first article, and with new insight, came a different ending to the piece, and I just couldn’t change the last one in the way that I wanted to, that allowed full respect for everyone involved, including myself.  Heavy start done, now to what happened, and I will bring some of the details from the previous unpublished article into this one. 

There was 10 days – I know, right – just 10 days, between meeting a pleasant human being that I purchased a musical instrument from (my child wanted, and of course, I made happen), and when I penned the first words to get the rattling thoughts out of my head.  There’s no secret that I’m autistic, but flippen hell, it would have been nice to get notification as to how my neurodiverse brain was going to process those 10 days.  But for me, this was the beginning of a journey, in what I suspect, and now hopeful for, will become my journey to fall in love with me.  But right here lies the problem.  

I have referenced a journey, but to be honest, I’m not good at journeys. I don’t like surprises either.  I’m so much better if I know the end result. In the irrefutable words of a very wise human, I like to “future-proof”. This applies to potential friendships, my cooking with a thermomix, my health, my child, situations, my death – you get the picture. This need to know the end, the direction, what’s likely to happen, is so inherent in EVERY thought and behaviour, that it literally creates one of the many conditions I have been diagnosed with – Generalised Anxiety Disorder.  And as I read the paragraph from the original post, it started with “The full story hasn’t been written yet, and it’s definitely not the end … “, it’s actually comedic how definitive it was.  But sadly, it also set up 10 days of unfortunately, unhealthy behaviours from me to another person, and a couple of weeks of borderline toxic thinking.  

But for a topic about falling in love with me, self respect, self awareness, seems a little discordant to be talking about my toxic thinking – how did it get here?

The issue that became glaringly obvious to my delightfully overthinking brain, when I realised that big emotions might possibly put a crack in my cold impenetrable heart, is that I actually have no skills in this area.  And this is where it got dark and heavy – I actually had gotten so used to future-proofing interactions with any humans, I didn’t stop to allow the other person to show me who they were – I projected onto them who I needed them to be. This feels safe for me. There’s no unpredictability. I know how it’s going to turn out. I know, and can take time to investigate what emotions are likely. I don’t have to be grounded in the now, because dammit, who really likes that slow and steady journey of self care and knowledge?! (Shhh … don’t answer yet!)

From the original post:

More often than not, along with our Neuro-Diversity Diagnosis, we get given the encouragement that we have a ‘superpower’ (I’ve always suspected that this is because to get diagnosis in the first place, it’s based on a deficiency model). My superpower would have to be the capacity to over-think! Ok – call it reflective or critical thinking, if you need to, however one of the reactions to the childhood trauma, and then the domestic violence, was to create safe systems. As more recent research has shown, other increasing responses to early life trauma is emotional dysregulation and Alexithymia. Understanding that I have limited capacity to label or process my emotions effectively, is it any wonder that I have attached heavily to a book that lists out 30 toxic behaviours, and encourages us to review our friendships monthly? What it doesn’t do, and maybe I need to find another book for this purpose (or write my own), is 30 self care strategies, or ways to light up my own dopamine receptors! 

So, the awakening over 10 days felt a little brutal, but it did give me some insight and allowed me to be even more vulnerable with a few of my closest friends. From someone else’s words “I think the attraction of candour is that someone might really know you”. Powerful words, and yet so intimate – just imagine if that someone was myself?! 

And the final paragraph from the original post … “But what is definitely coming back is my willingness to let people in. It’s hard, and I’m not a straight up fan of being vulnerable, but in the last 10 days, I’ve realised that I’ve still got a life to live, and I want to be on this journey to rediscover me!

Why would I consider changing schools for a Prep Student during the middle of a worldwide pandemic? It’s a level of grief – really. I am not sure I can explain it any better than that. It’s all the little expectations that are not met along the way. It’s all the small incidences where the hope that the system will not fail my child, but has, or the response is going to be better than it’s been in the past, but again isn’t. How do you explain to a Teacher that asks “what’s the actual problem?”, that the problem is enmeshed into the very reason she’s asking the question? And there’s not a significant incident to talk about, but instead its all slowly chipping away at the edges of our personality so that we fit inside the education system that is designed for a ‘majority’.

So, it’s now June 2020.  We’ve survived what turned out to be the first of many Covid-19 pandemic lockdowns this year, started my 5yo in Prep at a school that we had 18 months of conversations with, to ensure it was the ‘right fit’ (I’ll clarify the issue with that in a bit), and for most part, only had 2 major concerns with the school that have required ‘public’ conversations with her Teacher in 6 months – not a bad innings I would say.  And possibly from the school records, I would suggest that there’s probably not much more on her One-School file than that.  She has entered a school with 713 other students (approx), and immediately attended full-time, in a mainstream class of 23 students, with only herself and another student going into her classroom with diagnosed disability.  

We met with Head of Special Education numerous times over the 18 months, and asked what we thought were appropriate levels of questions for first time parents sending a child with higher needs into a mainstream school.  We even got to meet all the Prep teachers, and had our pick of classrooms (based on the identified needs of my child) and teachers that would best suit her.  I would say that the first ‘failing’ of this system, was entrusting that I had the knowledge and capacity to ask the right questions of the school, given that I have not had any experience of being a parent with a child at a school – there’s something to be said for lived experience.  There’s also something to be said for the Head of Special Education to not identify this obvious lack of knowledge, and guide us further in this area.  In hindsight, we didn’t get any tours of Special Education Rooms, Technology Rooms, Music/Dance Classrooms, even any classrooms beyond the Prep classrooms – everything was cursory glances.  I had not met either of the Assistant Principals or the Principal until AFTER my child was an enrolled student of the school.  Hindsight is 20-20 though! (And as I prepare to make this article live on my blog, almost 12 months later, we did make a change to a new school, and the new school offered meetings with Teachers and Admin leaders of the school, but only cursory glances of classrooms – so it really might be a department issue.)

Mid January 2020, Teachers chosen, classrooms decided, and school books and uniforms organised, we are notified via letter to our home address (where the basic detail of my child’s name and address were written incorrectly), that my child’s teacher was not going to be her teacher for the first 4-6 weeks due to an unforeseen operation.  

I should point out at this point, that my child is diagnosed ASD, but despite the label, what was communicated very clearly to the school early on, is that advance notice of change is crucial in my small child’s world.  And this is where the grief starts – that relief Teacher could have been AMAZING, but we were never going to get to find that out.  Because what happened for us, was that the first erosion of trust came from the letter that was sent home having the BASIC details about my child handwritten incorrectly on an envelope.  That letter invited us to go into school the week before school started to drop-off books, and attend a BBQ that was put on for new families – but we had to go in and spend the time meeting the new temporary teacher (knowing she was temporary), explaining the needs of my child, so that my child had the tools to cope for the first couple of weeks.  2nd erosion of trust.  

First day of School – 3rd (and major) erosion of trust – my child’s father breached a temporary DVO, and direct instructions from the Principal and turned up to my child’s classroom at 10am in the morning, and I was not notified, until I arrived at the classroom at 3pm that afternoon to collect her!  It was explained as “we had it under control”.  I can’t even explain further the emotional damage this event caused.

There was the Chronicle’s “My First Year 2020” Photo’s, that the promotional brochure was put in our Pockets in the classroom, so that we remembered to buy the Chronicle on 24th March 2020 (and we were under Covid lockdown by this stage), only to find that for some unknown reason, my child wasn’t in those photo’s – and of course, the school doesn’t list the names of children, so my child gets the first visual reminder that she’s different, separate, and not one of the group.  And because we were in isolation, and me not being an ‘essential worker’, we really had no recourse to ask any questions as to why this happened the way it did – just left with the sense of disillusionment.  

But by week 6, the actual teacher had started in the classroom, and within 2 weeks, we had the first ‘big incident’ – my 5yo believing that she was wrong on everything that she did.  With some creative questioning from the OT, it was nailed down to an incident at school, and so I approached the teacher … to find that yep, she had indeed told the whole class in a teachable moment that “if they’re A’s didn’t look like this, they were wrong!”  I get it, sometimes, you do have to make broad statements, but this is where the grief for me lies.  The question I had at the time was, “You know that my child takes your words literally.  Did anyone approach her and clarify your statement?”  Nope – we have to teach for the majority.  The majority of students understood what the teacher meant, and my child didn’t show any obvious signs of distress, until she was in a safe place – at home in front of Mum.  How many times does my child have to hurt in silence?? And because it’s her first year in the Education system in Australia, she is yet to be ‘verified’, and so there is only one Teacher Aide for 23 students – one very amazing teacher aide, but again she can’t be everywhere at once, so the issue went unnoticed for nearly a week. 

And then there have been the days where we have rocked up to find a Supply Teacher or Teacher Aide in the classroom – we have a communication system in place that DIRECT messages me, so that I can notify my child, or make a choice to keep her at home if the change is going to cause major meltdown, and consistently this is not utilised.  I feel like I am getting used to it, but like abuse, it erodes a little piece of me each time. Like the time in Week 7 of Term 1 where my student won Reader of the Week, and I didn’t get a notification to attend Parade to support my darling child on Parade – my child, the Empath, the one that gets to see every other Child’s parent come and support, but their own parent isn’t there!  I cannot, even now, many months later describe that heartbreak for her.  

There’s been cute stories too – my child being ‘handsy’ with another child in class, which sounds adorable.  It’s not – my child and another child were kissing each other – slightly more than handsy!  As a parent, I don’t need to be alarmist, but I do need that information to be accurate.  In the classroom, my child has been allocated a square at the ‘front of the mat’ (so the teacher can keep an eye on her), however this just feels discriminatory to me.  I should point out at this stage that my child is also delightfully empathetic – so she senses emotional intent.  She is aware that she has to sit at the front of the mat near the teacher because she is ‘one of the naughty students’.  

And Covid – now NONE of us had this easy – really – and there was no reference manual as to how it should have been handled, because the modern world had not seen anything like it before.  But, it genuinely doesn’t take away from the erosion of trust in a school system to support the needs of their community in times of crisis.  We entered this particular school system, transparent about our vulnerabilities, my childs’ needs as well as my own.  Early on during lockdown, I got a call from the teacher to ‘check-in’ (nice, but probably needed to happen on a far more regular basis), and I will add in here, why didn’t I get a call from the HOSES team?  My child is going through Verification at this school, so they were aware of the higher needs of our family.  That teacher focused on the effort she put in to do a fish puzzle for my child, and while lovely, totally missed the needs of my child during this time.  All the while, it was promoted by the teacher and school communication, that any child still at school as only receiving supervision for the 6 hours that they were inside school grounds – but of course, when I finally send my child back to school, I find this to not be the case – they are genuinely learning in the Prep classes, because Supervision “would not work effectively for the Preppies”.  Yep, another erosion of trust, because my child missed out on 5 weeks of school because of mis-information.  And then when I did eventually have to make the call to send her back, earlier than the Government recommended timeframe, I was made to feel like a leper by the Principal because she was not a ‘child of an essential worker’.  

It does lead into a side point of the fact that during the whole lockdown period, my child was a vulnerable student – we knew this, and feel that it’s a system issue.  The school, along with a number of Support Organisations, aren’t the first to acknowledge vulnerabilities, and it consistently feels like you “have to cry wolf” to get the response you have a right to.  While it doesn’t make it right, I do feel that being proactive in this modern world, doesn’t get you the help you need.  Examples: Teaching a child that a stove is hot, rather than waiting until they burn their hand and need medical attention; Funding for exercise as a preventative measure under Medicare, rather than waiting and funding it under disability as a response measure; Funding frontline DV workers to talk to victims in crisis, rather than funding at both levels, victims and abusers, to stop the cycle; Even not getting medical diagnosis until hospitalisation, rather than believing the patient, or making it affordable for the patient to seek help in the first place.  Funding, time, energy and attention seems to be given to those that are already broken, or are so very close – not really effective for a proactive person such as myself.  

Now onto behaviour management.  When I read the Enrolment Pack in 2019 (yep, I am one of the parents that reads information before signing it), I recall the brief sadness of knowing, that due to my child’s Neuro-diverse responses to life situations (and my support of them), she would unlikely get any major behaviour awards during her time at school – that was ok – I was prepared to support her emotional journey to be an independent thinker, and not need external validation to have a healthy sense of self.  What I was unprepared for, was the discriminatory way that the school goes about explaining these awards to Preppies!  At some point, over the past couple of weeks, Gold behaviour awards were explained (either directly or indirectly) to my child as “when a student is good” and “when a student is bad”, and unfortunately, this means that my child now has quite a black and white view – of her own behaviour!  And the explanation came a week after she was sent to Behaviour Management classroom because a Teacher-Aide that did not understand her, missed the fact that she needs extra processing time once given a direction, and my child was sitting at AMBER (bad children) level at the time.  

Explanation by the teacher, is that the Behaviour Management strategies HAVE to work for the majority.  “We have to teach them the skills they need to be functional in society – would you like someone to come up and punch your child in the head without warning?”  Clearly not, but I also don’t want to teach my child that the ONLY way to hurt another human being is by hitting them.  I think that the premise is that you become a functional member of society if you don’t physically lash out at another human being.  There have been a number of comments around this school of verbal abuse and bullying going unreported and not dealt with by the school, it does make me question the true value of that majority thinking – and most especially when explained to a small child with the terms of good and bad.  And the recent incident that got my child sent to Behaviour Management, involved little Miss, and another girl in her class, that decided to be ‘balls’ (super cute, and they weren’t doing anything with mean intent), and they were kicking each other.  Teacher Aide asked them to stop, and the other child (who’s Neuro-typical), did immediately, and my child (who’s Neuro-diverse, and needs slightly more processing time), did not stop immediately.  Both children were kicking, but it was my child that was sent to the behaviour management classroom.  The school has a policy of no kicking or hitting, and I support that, but if they really wanted to send a child to BM for that behaviour, they should have sent both girls, not just the one that already has an identified difference, that they DID NOT take into account, even though it’s on record.  

Now, in the Classroom Teacher’s defence, once brought to her attention, she took action that means for the remainder of the year, all behaviour management decisions relating to my child, will go through her – and that’s great – but not effective into Grade One, so what happens next year? And if the school system isn’t able to identify and respond to my child’s difference this year, what makes me think it’s going to be any better in future years?? 

And then there’s the trust that’s eroded when you see the School Receptionist is nominated as the Secretary of the P&C Association – maybe it’s just me, but I do find it hard to believe that complete impartiality would exist in this circumstance.  A bit like the Behaviour Management Teacher being related to the Head of Special Education.  I struggle to believe that I am going to have a ‘voice’ in this environment – and to be honest, I am only getting one chance at this – I only have one child, with no chance of any more. 

There is also the unsettling issue of how an email that had my name attached was handled recently by the Head of Special Education – it’s not my issue to have, but it did lead me to try and make excuses for the HOSES behaviour, just so I can continue to have a workable relationship with this woman.  When I called her to task on the issue, her response was somewhat mediocre, questioning me on why I had an opinion on the matter, and completely missing the point that she had critically hurt my friend by her dismissive behaviours.  Then there’s the Principal’s handling of the issue with my child’s father turning up at the school.  Unfortunately, every interaction I have had with the Principal this year, I have found him dismissive – of both the impact of my Ex’s abusive and controlling behaviours, and my child’s needs relating to her ASD diagnosis.  His response in each case was “he has parent’s at the school where the Ex is worse than mine”, and “his child has ASD also” – just not helpful!  But then again, this is the same School Principal that will not allow a Speech Therapist to enter the school for a child that has diagnosed disability and funding for said Speech Therapist into the school grounds after Covid-19, because a Government Official hasn’t expressively stated that it’s allowed!!!  

All of this means that I haven’t yet put my hand up to volunteer at the school yet … 

And you might read all this, and think “we’ll, why doesn’t she homeschool?”  Thanks for thinking that’s an option, but with my own disability, it really isn’t – it just gets to be another level of grief.  

So, in summary, there’s a whole lot of grief here for me – I shed a few tears writing this (cathartic, actually), but I think I can relate it back to the critical point when you work out that a relationship has failed.  We might cycle though the stages of grief, with the middle stage being “bargaining”, but in the end, the realisation that the relationship has failed is still there.  I haven’t got a solution in place yet, but the cycle ends ultimately at HOPE.  Hope for a different way.  Hope that what we were learning in the education system about ASD and genuine inclusion 20 years ago, has been applied in a school somewhere. Hope there’s a school that understands how to put the needs of the children first.  Hope that I don’t have another 12 years of heartbreak.  Hope that I can find a community to support my goal for my child, and that is for her to become all that she wants to be, in whatever form that looks like.  

12 months on, we did move schools, and entered into a small classroom Special Education Environment, where my child had only 10 other kids in her class.  This has, for most part, been a much more positive experience, but it’s not smooth sailing. But every day offers a new level of learning, and a different processing of the grief. 

Emjay. Doing Life Differently 🌈

This isn’t one of those posts that leads to a solution or an “ah-ha” moment at the end. It’s not even one that has a happy ending. It questions the truth of self-fulfilling prophecies, and the law of attraction.

My recent session at the psychologist (yeah, one day I will write an article on how worthwhile they truly are), was all about questioning some of my core beliefs. And to my surprise, one of core beliefs, which didn’t come up in the session, but continues to hold true, is that “as I start to make change in any issue, the universe sends something along to test that resolve”. I have to “prove” that I am stronger, healthier, mentally stable, capable, etc. Eg, I am saying no to ice cream, and my daughter pleads with me to go to McDonald’s and buy her and I a McFlurry – how do I say no to that?! 

The question that is often asked prior, as I am trying to make sense of my heightened state as a core belief is challenged, is “what’s the worst that can happen?” Eg, what if I am late to an appointment?; what if I say yes to ice cream, when I have decided to say no?; what if I don’t tell my daughter that I love her and the exact time that I will see her next, as I drop her to school of a morning?; what if I don’t answer that phone call? … truly, in my brain, an unrelated, but equally (potentially) tragic/scary event, that’s what! …  and that’s where we are at now … 

The unrelated event … I opened the Pandora’s box this morning with a realisation about my family, only for me to receive this message from my sister. 

Yeah, I get that isn’t the way the world works, but this is the way that my brain works, and I want to share this, because in reading this very long and messed up message from my sister today, I know this became more about her issues, and the psychologist is right – it literally has no power unless I give it the power to affect me.

So, for context, my Father passed away in March, as the patriarch of a toxic family, and names are changed to protect privacy. I will also add a little note that I found funny … my sister signed this email MHFA Accredited … and when you look up details of that, it’s a free course, that anyone can do, that talks about Mental Health, literally making her look like she has got authority on the topic, when in fact, actually has none at all.

~*~

I have spent the last week deliberating over whether or not to send this to you.  And tbh, I’m beyond disgusted that I need to, and no doubt Dad would be the same.  I have something to say to you all, and since I don’t have everyone’s email addresses, I’m sending to the addresses I do have.  TBH, I really don’t care if you pass on the message or not.

Celine – for as long as I can remember, you have always insisted that as the eldest, you were the most responsible.  Yet you not only failed Dad, you failed this family in the most spectacular fashion.  For decades you have criticised anyone who stole from those less fortunate – and face it, you can’t get much less fortunate than DEAD.  Yet here you are, making every excuse to justify your despicable act. There will never ever be justification for what you did.  There will never ever be room for forgiveness for what you did.  I’ve spent my life defending my actions to you –  I got into the Army….apparently it was because ‘they let anyone in now days’;  I had the first grandchild….you yelled at me, telling me it was your RIGHT as the eldest child, to have the eldest grandchild, and I was stealing what was rightfully yours; I fell pregnant with my second child….you accused me of ‘stealing’ your thunder because you happened to be pregnant at the same time.  And these happened before I was 25…the list goes on, trust me.

You asked me if I thought it was a good idea to be a prostitute – like who asks that sort of question of their younger sister.  You asked me if it was ok that you deceive your ex-husband to have a second child because you needed someone to love you unconditionally – how’s that working out for you now?? I began working in healthcare, but apparently I couldn’t possibly know as much as you, despite the list of accreditations I have accrued, because I haven’t been in the industry as long as you…pfft…what a joke!  I’m done having you question and criticise me, especially since you clearly can’t get your life on track.  No, I’m not perfect, but at no point in my life have I ever walked away from my children and not bothered to contact them for months!  It hasn’t always been easy, but I am proud of how hard I fight for my children – and how I’m teaching them there is a better way.

Stacey – I don’t give a flying rats what you choose to be called, just in case you decide to tell me ‘it’s Tracey’ in your contempt-laden voice.  For a long time I looked up to you.  You appeared to be intelligent and despite a few hiccups, you seemed to have clear life goals.  But looking back now, I can see the narcissistic behaviours which led to the demise of both of your marriages, and which will lead to the corruption of the innocent soul that is your daughter.  You made the decision recently to exclude me from your life – for what reason, I will probably never know.  You have always chosen to draw good honest people into your world, then seek to destroy them with overly controlling behaviours and a lack of love.  I’m thankful that I raised Benjamin strong enough to see past your bullshit (yes, he’s told me plenty of your controlling behaviour towards him).  

As for recent events, your behaviour at Dad’s funeral, whilst not surprising, was hideous.  In every photo my Daughter took of you during that time, you had the ugliest expressions on your face – most filled with contempt and disgust towards those around you.  Clearly you were there out of some mis-guided duty as his second-born daughter….he would have been ashamed….you should have just never bothered coming.  I pray that one day, your daughter is strong enough to see past your bullshit.  Oh, and feel free to send this to a lawyer – there are no threats in this, there is no harassment, there is nothing more than a sister expressing her thoughts and emotions – which is not a crime in Australia.

Shane – Since before you were born, Dad put your needs ahead of everyone else’s, even if it meant other people suffered at your expense.  And despite getting every opportunity, you did nothing.  You threw hate, contempt and illegal activities at everyone around you – and you didn’t care who you hurt in the process. There was a time when your actions almost resulted in myself and 2 of my children living on the streets.  Another time, you stole all the fuel out of my car, despite me needing it to travel with my baby some 400km – because clearly you needed it more than me.  You have threatened to kill me and anyone around you who doesn’t agree with you.  You use your health issues as excuses for bad behaviour, and you use violence to intimidate and control. 

For a short time, I thought you had overcome this.  Yet despite having a near-perfect woman at your side, you chose violence as the solution to your problem – and it got you arrested. Then, when I went out of my way, putting my mental health at risk, you chose to abuse me, rather than deal with your concerns like a civilised human being.  The list of atrocities you have committed in your life is more than any person I’ve ever met – to know that I’m related brings shame.  You don’t have Dad anymore to bail you out.  You don’t have Dad protecting you.  You don’t have Dad to help you fight your battles.  And all of us who were willing, are now done with your violent tendencies – you are on your own.

Melanie – The baby sister.  For decades I have defended you.  For decades I have helped you.  For decades I have gone against the grain to support you finding your feet.  I helped you in your darkest hours and your brightest days.  I have been the one person, your whole life, who had your back, no matter what.  So you can imagine the pain I felt, to have you throw my help back in my face, and treat me with such contempt – behaviour I expected from your siblings.  Not you.  Out of all the siblings, I expected better from you.  I’m truly heartbroken. Don’t let your lack of book-smart intelligence destroy your heart or mind.

To you all – I have removed you all from my social media accounts.  At this stage in my life, you do not deserve the honour of watching my children grow into civilised human beings.  You do not deserve the honour of being called Aunty or Uncle.  My children will never experience the horrible behaviour exhibited by you all.  And unless you work out how to fix this chaos – and fix it, my children will never know you.

Dad and I were not always on great terms, but even when I really hated him, there is NO WAY I would have treated him or his memory so despicably.  I miss him more than words can describe, and my mental health has taken a nose-dive since his passing – your behaviour added to my despair, which is why I decided to remove the open access once freely granted.  You all have my phone number…. I suggest for the foreseeable future, you don’t call.  Although, if you do have the overwhelming, uncontrollable urge to contact me, send a text, maybe one day, I’ll reply.

I wish you all whatever the universe believes you deserve.

Your heartbroken sister. MHFA Accredited. (Mental Health First Aider)

~*~

For some of us, technology is this big, scary, not at all understood THING, and we have even less capacity to control it.  But technology has been around as long as you have.  What we are talking about here though, is another step up from the tech you already know.  You know what it’s like to have electricity to turn on lights in your house, and to dial a number into a phone to call a friend for a chat or a taxi to take you to the shops, or even clean your clothes in a washing machine.  The next step however, is to allow these mundaine tasks to be a little easier, or even just something we don’t even have to think about.  And for some, technology allows us to do things that our body or situation limits us doing, and for me, that’s where the joy of technology really lies. Imagine waking up of a morning, to your house already warmed to how you like it, and the kettle boiled, ready for that first cup of tea in the morning!  😀

Some transparency before I start though, this is written from the perspective of both the physical and social/emotional limitations that both my daughter and I currently have, living in a regional Australian city.  It’s fair to say, I cannot cover all disabilities, and I have no desire to cover every piece of tecnology, but hopefully it will encourage you to try.  And some of our technology is funded by Australia’s National Disability Scheme (NDIS), and some of it is just personally acquired and appreciated!  

Mobile phone / Smartphone – Yep, I am going to start here.  90% of all adult Australian’s own a mobile phone, if not a smartphone (it’s now quite hard to buy a mobile that isn’t a smartphone, and the difference is the capacity to interact with the screen). Falls alarms have SIM cards in them, and so much of the technology that supports us, starts with the items we can carry with us. 

Internet – specifically NBN, or the National Broadband Network. Again, with over 90% of all Australians having access to a fast stable internet, and plans that average as low as $50/month, this is almost a given, and pretty much ALL of the “Internet of Things” category needs internet to connect and access. 

Voice Assistants (Google Hub, Alexa, Apple Homepod and a few others) – Now this is really where we start to get super-techy!  These little beasts are the basis to all “voice control” capabilities.  When I wake of a morning, I say “OK Google, Good morning!”, and it responds with the weather for the day, my first 3 calendar events, the current news, and two particular podcasts that are relevant to me.  This allows me to have a clue how to dress myself and my child, what we have planned for the day (let’s be honest, we can easily forget!), what’s going on in the world, and then topics of interest to me while I am making my first cup of coffee.  Voice assistants allow for many other daily tasks as well, but for most part, access to information is literally a question away.  And for those concerned about the “something in my house is listening to me”, the security built into these devices is ever-increasing, and due to international laws, is being designed with privacy in mind. 

The next group of technologies fits into the affectionately named “Internet of Things” (IoT), and yeah, they really can make your life a whole lot easier, but they are somewhat dependent on having one to all three of the first listed technologies.  

Automatic Thermostat (Sensibo / Eve / Tado) – These little beasts either attach to a wall (or in my case, sometimes just on the top of the bookcase), and are a thermostat, and allow for voice control of remote controlled heating and cooling aircon units, heat pumps, and the like.  I can both turn on the aircon unit by voice at any time of the day, or can set it on auto, so that when criteria are met, the aircon unit kicks into action automatically (ie, the air temp in the living room drops to 12 degrees anytime from May to August every year, the aircon automatically kicks in, and heats to a minimum of 18 degrees).  

Falls/Personal Alarm – SureSafe is the version I use, which is IP65 rated (water and dustproof), and allows me to schedule in 5 numbers into it, and if at any time I breach the parameters that have been set, it will alert all of the contacts to my current situation, and a map of location.  There are a number of varieties, however having one that has a SIM card (for mobile reception) pre-installed, allows this to be a fully portable device.  Mine also comes with a myriad of options to attach to myself, so it’s always on me.  

Smart Watch (Apple Watch, Samsung Watch and so many other choices here) – specifically Apple and Samsung have a ‘connected watch’ that by the beginning of 2021, are the only two brands that have medical falls technology built into the watch.  But if you already have a Falls/Personal Alarm, then a smart watch can still be of assistance, just not for emergency situations.  And if you are someone who wears a watch, this is a great transition into wearable technology.  However, smart watch can offer so much more – I can take a phone call, add to my shopping list (by talking to my watch), read emails and texts easily, check in with my heart rate and do mindfulness when I have an anxiety attack, record a conversation that I am part of, check the weather at a glance, start/monitor a workout, pay for a cup of coffee while out and about, and many more.  Of course, it will need a smartphone to connect to. 

Automatic Vacuum/Mopping Robots (Roomba) – Single level dwellings, especially if you have cats or dogs, automatic vacuum or mopping robots are a godsend.  They will do this dreaded task with almost zero effort.  I have had the most popular model for more than 5 years, and while the technology has changed considerably in five years, it takes one press of a button to automatically vacuum my whole house, and it actually gets into the places that a standard cleaner and vacuum cannot.  

Electronic Kettle / All in One Cookers – Yeah, ok, Electronic Kettles are definitely not on the critical list, but there is something just blissful to waking up, pressing a button on my phone, and KNOWING that my kettle is going to stay hot until I get my lazy butt to the kitchen to make my essential cup of coffee in the morning.  I haven’t gone so far as having a robot to bring it to me, and it’s possibly the perils of single-life-parenting – it’s just something I won’t let my 6yo do!  A more controversial ‘kitchen tech’ is the Thermomix (or other all in one ThermoCookers) for ease of cooking.  There’s a number of different brands in this category now, but it is one of the items I use in the kitchen a lot, especially from a fatigue management perspective – I can literally sit on a chair, and put in all of the ingredients in their order, and the meal turns out perfectly every time – and there is absolutely no risk of me slicing my finger off.  

Security / Doorbell Cameras – Allowing you to interact with someone at the door, without having to ever go to it, seeing if there’s been a parcel left, awareness of what the pets or humans are doing through the day, are all lovely features of security cameras.  One of the more recent features of cameras in the capacity to identify the person in the vision, and when linked with a security lock on doors, allows you to give access to approved people without going to the door.  

Air Purifiers & Humidifiers – Aircons can fit in this category too, and worth considering if you are replacing a broken unit, or building a new house.  A fair consideration if you have a medical condition that makes these units a necessity.  Imagine a world where the items in your house could respond to the environmental conditions, and change their settings based on your needs?  I appreciate one less thing to think about. 

Door and Window Sensors – Regularly feeling so fatigued and as a single parent, it’s easy to head to bed without checking all the windows and doors, but I have just got a small sensor on each window or door that regularly gets opened in my house, and my phone is setup to alert me when conditions are not ideal.  ie, after 9pm at night, if my ‘location’ on any of my wearable devices identifies that I have left the house, and the like.  

Fans – Where I live, it can really get to be inefficient and expensive to always use the aircon to heat and cool, and I don’t have it in every room – voice controlling fans fits into this category of “items we can voice/externally control” that just make life a little more comfortable.  I have some distance to cover to get to different areas of my home, and sometimes my body doesn’t work as efficiently – it’s super convenient to be able to have a ‘voice remote’.  

Locks – Linked in with doorbell camera’s, wi-fi and bluetooth locks just use our face/fingerprint/touchpad to control the unlocking of the device – no more keys!  Nothing truly fancy here, but I do appreciate being able to gain access to the area’s that I want to lock off, without having to go find the hide-a-key!  All of these locks have the capacity to ‘change the code’, and so I never feel like I’m going to lose the key, or have to replace the lock because someone has a key that I cannot retrieve.  I’m not locked out because ‘I lost the key!’

Power Outlets and Powerboards – This one is an interesting category.  Given how much technology I have, I do also like to have ‘Energy Meters’ on each significant powerpoint, to monitor what’s costing me money.  I also appreciate being able to turn off/on each powerpoint without physically standing beside it – and it allows me to turn standard items into ‘voice controlled’ devices.  eg, fairy lights for lighting my long hallways during certain hours of the evening, this is how I control my ‘old-school’ portable fan.  I buy the Arlec brand from Bunnings, and they have been working well for a number of years.  

Taps – If you haven’t yet found the joy of a ‘flick-mixer’ tap, get onto that – sooo much easier for kids and adults alike.  But the next step up, is the option that a number of modern shopping centre bathrooms now have – automatic faucets – and this works really well in the kitchen space.  Definitely a conversation to have with an Occupational Therapist, or to consider if renovating/building.  Simply swipe your hand in front of the tap, and it turns off/on, and the more recent ones allow to you ‘measure’ a certain amount of water per pour.  

Windows – More than just a sensor, it’s possible to install a device that can automatically open most sliding glass windows and doors.  Not like the big automatic doors we see in shopping centres, the ones currently being designed for home use are bulky, and still quite expensive.  But let’s be honest, if you are in your wheelchair, it’s a whole bunch easier if the door opens by itself!  And if your hands struggle to turn on a tap, you are just as likely to struggle with the mechanisms that allow you to open some windows and doors. 

Smart Blinds and Curtains – Remote controlled blinds and curtains have been around for a while, just the technology is now cheaper and easier to access in the home environment. The models now can be after-market fitted to the number of blinds and curtains, and controlled by voice.  And if you are in a home with a lot of windows, and colder months, these just make life a little easier – but if you are trying to live independently in a wheelchair, these devices make life possible!  

Smoke Detectors – As of the beginning of 2021 in Australia, it’s a requirement that all dwellings have smoke alarms hardwired into a house, and set so that if one alarm is triggered, all go off, but due to the nature of legislation, it’s unlikely you’ll have one hardwired into a kitchen/living room area (if they are an open space). We also have capacity to purchase internet-connected smoke/co2 deteters that have the same features.  The new ones also with link with your WiFi, and can play music through the same speakers.  I appreciate that I can put an ‘extra’ smoke alarm in my living room space, for peace of mind, since I have an all-in-one Living/Dining/Kitchen space. 

TV’s – Are these really that necessary?  Don’t know, but I definitely use it!  I can tell my TV to turn on, off, play a certain movie, ask it to make suggestions, latests news, listen to a podcast … the list goes on … I don’t watch a lot of TV, but when I do, I want it to be about my convenience.  And that dreaded issue of losing the remote is just not a conversation I need to have.  

Lights – including light strips and light panels – THE MOST USED TECHNOLOGY! Well, I think so … this is the one that I use the most.  I have lights that turn on and off at certain times of the day, light panels on the wall that I can tell to turn on or off or interact with music playing and under-bench light strips that light up at night for ambient lighting so I don’t run into things when I get out of bed in the middle of the night.  My lamps have colour change bulbs in them, so I can set a different mood if I feel like it, but every single one of these options works like a normal light, or something a little bit fancy.  If the world of technology scares the ‘daylights’ out of you, this is also the cheapest and easiest place to start with how it all works – one colour change bulb can cost as little as $10.  

The next group are simply Apps (or applications, as known in full) on a smart phone that I find very useful, but there are so many, that could be an article on its own – but these do specifically support me in a commonly developed deficiencies.  

Favourites Bar on a Web Browser (Google Chrome) – whatever icon you click on to get access to the internet (a browser), you will likely see a list of your ‘favourites’ websites across the near-top of the screen.  If not, you can turn it on (generally right-click, or click on a menu in the top left of the screen), and it gives you quick access to the websites and pages you like to view the most.  I find this handy and fast – no more trying to think, when my brain already hurts! 

Google Calendar – Not alone in my experience of ‘too much to do that my brain struggles to remember’ (and science backs me up on this point), so it’s not surprising that I recommend an online calendar.  What I like about Google Calendar though, is that it’s constantly online, and available, and seems to be the most supported/stable platform – no squabbles about whether you are an iPhone or Android user.  I don’t have to carry around a diary (it appears on my phone), I can ask my devices at home what I have scheduled for the day, and I can edit it (and add other people to it) where I need to.  

Aloud! – This is simply a downloadable App on a smartphone.  It’s a good one when I’m tired though – opening documents or websites into the app, the application will read all the text on the page.  This is great for our MS Newsletter, and really any website that I want to ‘read’ but I have either forgotten my glasses, or my eyes hurt too much to bother trying to read.  

Seeing Ai – Free version of an App that any Occupational Therapist recommended, but this one also supports vision failing.  Upon opening the app, depending on the icon selected at the bottom of the screen, the app just reads/describes whatever is on the screen.  Categories include Text (reads the typed text it sees), a Document (reads handwriting/text on a page), a barcode (identifies a product by the barcode scanned), Person (identifies the people in the scene, and describes their location), Currency (identifies the currency), Scene (describes the scene), Colour (identifies the colour the camera sees), handwriting (reads any handwriting) and Light (makes a sound based on how far aware or close and object is to the camera – deeper tones are close, higher tones are further away).

The last couple are simply Assistive Technology that aren’t standardly included in most Occupational Therapy reports, however work surprisingly well in our space.  

Rubber-backed mats – There are two options here, the anti-slip matting that you can purchase from most cheap shops, is a great option to put under mats, kitchen equipment and the like, to stop slippage of items.  However, for the purpose of covering floor tiles, I have found that large rubber-backed mats are a good choice too.  This allows the mat not to slip around, especially on tiles, flexible over cords to reduce trip hazards, and my all-time favourite feature, can go in the washing machine when they get dirty!  They are great for bathroom mats and also very effective for loungeroom furnishings. 

Swivel Cushion – $15 from Kmart Australia.  They are promoted to be used in the car on your front seat, but most modern cars don’t have a flat front seat, and the base of these little beauties needs to stay flat to work effectively.  I use them on my wooden kitchen chairs, and they are stated to hold a weight of 100kg, but from my own experience, go much higher.  

Anti-Glare / Heat reduction Window Film – For privacy and heat reduction in rooms, this is a cheap and very easily installed, and removable option.  Purchased from most hardwares, it’s about $30 for 2.5 metres, and sticks onto windows, allowing you to still see out, but others not able to see in.  It has easily reduced the daytime summer heat in one of my rooms by 5 degrees celsius, and that allows the fan to be more effective when required.  

Shadecloth – Most would not expect this to be listed here, but for those of us that struggle to regulate our body temperature, however choose to live in modern houses, this is a great option.  I have, like most that live in a Unit Complex, quite a small backyard, and have put shade cloth over the area, that reduces the amount of heat coming through my windows significantly.  This both saves on electricity to heat and cool my house, and reduces the glare through my windows, making my spaces just a lot more liveable. 

Indoor Clothesline – You’ve likely seen these in Bunnings or in the backyard of small Unit Complexes, but did you know that you can install a retractable clothesline indoors – wall to wall of an internal garage?  Hills is a common brand, and it allows for me or my supports to be able to hang my clothes day or night, not weather dependant, and I don’t have to get in or out a door to do it! And lets be honest, it’s cheaper than a clothes dryer.  This is not at all taking away from the technology of combined Front Loader Washing Machines / Dryers that are all in one – these can work well, but are often a choice when our current choices break down or need replacing.  

All of this technology can seem overwhelming, but even just one or two items can make a significant difference.  The capacity to see who’s at the front door when you are out in the back garden, simplicity of being able to schedule lights to come on automatically when you are away from home, or to comfortably get up from a seat without twisting your back, just makes life a little easier.  To get more information on any of these items, and so many other choices that are available, use technology to look this up on the internet … a quick search on a computer, looking at videos on YouTube … you might be surprised what you’ll find.  

* And as an endnote, while this wasn’t written directly for you Miss M (an adorably creative and supportive human), you know it’s totally what we agreed to!  I look forward to listening to your first installment!  :-D. 

As a reflective thinker, I spend a LOT of time thinking about the moments of change and a bit of the “what if” moments. Those defining moments that changed the course of who you turned out to be – the people you’ve met, the books you’ve read, the car accidents that you would have missed if you’d just left the house a second later … and today is my 46th birthday, so you can guess what I have been doing!

Sure, as a single parent, at the start of a new school year, I’ve been doing all of the things that need to be done, including the very new concept for my small human – homework! She’s not a fan – yet …

In what has turned out to be a ‘turning point’ kind of week in our world, which my Lawyer was optimistically predicting, I think about the moment I read the book called Psychopath Free by Jackson McKenzie, and this book really made me think about the way that I view relationships – friendships, intimate partner relationships and parental dynamics – and this book ultimately led me to ‘sign a friendship contract with myself’ to review ALL of my relationships every month. I couldn’t have imagined the impact that book has continued to have – and how many times I have recommended it – on every aspect of my life. One chance meeting of a person in an Autism Course in a regional town in Australia many years ago, and a brief conversation about a book with a green cover … that moment changed me!

Or did it? Because in the true nature of reflective thinking, you start to realise that change only happens if you are prepared to accept it. I also had to head to the mechanic this past week, for a warranty issue with my car. The mechanic had told me what the issue was – an issue with the internal wiring in the brake lights – but the gentleman at the mechanic was kind enough to inform me that while it was that, the REASON it happened is that I consistently drove too fast over rough terrain! Damn, the guy hadn’t met me before, and he already worked out that I don’t like slowing down for speed bumps!

So, while I sit here reflecting about that I am likely more that half way through my years (shocking realisation), I realise that yes, there is often an impact from choices or events (car has to be repaired, partner moves out), but there is also a significant number of times where nothing happens. You can read a book, have a conversation with your child, drive to the shops and eat dinner and NOTHING happens – it’s insignificant, or so it seems. Until it isn’t. I may have just clued into the difference between ‘living’ and simply ‘existing’! 😀

It’s our choice to grow, and change.

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.