The Blunt Optic

Oh look, it's my annual post!

Having just re-read my previous post from June last year, I see that not much changed for us pandemic- wise.  Our state still only has 9 recorded deaths from Covid and for almost two weeks now has not even had a single case in hotel quarantine.  (And obviously no community spread). We had a week of full lockdown in January, beginning the day before school Term One was about to begin (and I had a ROUGH summer, my mental health was in the toilet and I REALLY needed Louis to go back to school, so it sucked extra hard) and Perth had a three day lockdown over the ANZAC day long weekend late April, which meant two important guests for Louis' birthday party could not attend, but we could go ahead with the party in our region.

And that's been it.  No masks, no restrictions of any great note.  I am still extraordinarily grateful for our position and I am sure there is so much more to write about the absence of Covid in our lives, but if I begin on that topic I will never get to any of the other topics.

This is the problem.

It has always been the problem.

Too many thoughts, too hard to get them on the page as fast as they come, too many connections to all the other things and the swirling swirling swirling - I can't catch them in time and something crucial gets lost and then I just give up because it is ALL TOO HARD.  Because I don't have all day to sit and just write and get it all out and then polish it up and I'm drowning in everything else.  I want to make a plan to write, but I never do.  And if I did, I wouldn't stick to it.

And can you guess what I discovered, finally, this year?

I have ADHD.

Oh yeah.  Boy, do I ever have ADHD.

I had booked my diagnostic appointment for Feb 2nd, but of course our ONE week of lockdown began on the 31st Jan, so the next gap in the psychiatrist's schedule was April 22nd (the day before Louis' 8th birthday).  Nothing like trying pack all that into the same week.  After having waited six months.

Anyhoo.  It is done now.  It explains a lot of things and makes a nice bookend to the autism diagnosis, which also explained a lot of things.

I have started on Ritalin LA (long acting) and gone from 10mg to 20mg and I think there is some benefit but it is really hard to quantify because it doesn't seem pronounced or even particularly consistent and of COURSE I have been sick for the past two weeks (winter) which is not helping in the least.  I'm incredibly nauseated and dizzy and fatigued to the bone and none of that makes me want to get on and 'do' very much.  I don't quite know how I stumbled into writing this post to be honest.

Let me retrace my steps. Here is how it went:

As I was driving Louis to the bus stop we saw a small mob of white tailed black cockatoos by the side of the road and I took some pics with my iphone.  When I got home I got my camera out because I sent the bird pics to my sister in law and she sent some raindrop on roses pics back and I thought I ought to get one of my rose, with my new (birthday present) Tamron 90 Macro lens. Then the cockatoos flew over my property and I started wandering around trying to photograph them (but failing because I don't yet have a telephoto) and whatever else took my fancy with the macro lens. When the rain picked up enough I came inside.

I wanted to see the macro shots and to maybe send one to SIL, but that required me to get on the computer, transfer them from the camera and the iphone (which required a software update) and while all that was happening I checked my netvibes and read my one blog that is still active. She is at the beginning of long summer school holidays in the US and was asking for ideas on how to spend her free time, so I posted a comment (which I rarely do).  And that made me need to check the website address of this blog, and then all of a sudden, I am sucked in to this rabbit hole.

Um, so yeah, ADHD.  That's a really great example of how my brain moves me from one thing to the next and I end up somewhere completely off track. (And that's the short version).

Now I'm just going to post this, and then I am going to see if I can figure out how to upload some photos on it. 

Sigh.  It's so demoralising having to re-learn things ALL THE TIME.  I've given up trying to pretend I can keep some things in my head- such as how to adjust my camera for light and shutter speed on various settings.  I've been dealing with cameras since I was 15.  But I CANNOT remember how to do this, if I am not doing it every single day.  I could re-learn it, yes.  But then if I don't pick up my camera for a month, *poof* out it goes.  Like it was never there. Didn't matter HOW many times I 'learned' the difference between classical and operant conditioning for my psychology degree, as soon as the exams were done - *poof* - GONE.

ADHD.  Maybe better suited to those who have set up their lives to accommodate going with the flow a lot more than having to keep shit together and micromanage stuff.  I love the creativity side of things.  But I don't do well with responsibilities. 

Actually, that isn't true.  I do amazingly well with my responsibilities BUT it takes every ounce of effort I've got and I'm regularly in burnout and stressed and have a shitty immune system because of the pressure that puts on my nervous system and immune system. And it's mostly all I can manage to do, because there is never enough energy left over for anything else.  Especially the creative dabbling.

I am hoping the Ritalin can give me that space back.  And if not, then perhaps a change of medication might help.  I know it's commonplace to have to try a few and I'm aware this could take the rest of the year to tweak.  That's ok.

I'm going to go out on a limb and say if my next post arrives before June next year, then I've made some decent progress! 

E.T.A. I have spent the last hour trying to get photos on here.  I can figure out the process but the method is just too slow.  My computer is old and everything is tedious and laborious and makes for frustrating work.  I am going to start putting pics I want to upload here into a dedicated folder, and when I upgrade this thing (Whenever the new 16in mac book pro comes out, hopefully this year) I will dedicate myself to making this work.  But not under these conditions.  It's like torture.

Here we are in 2020.  (And that's another post entirely- what a year it has been so far!).  It's clear I haven't been very prolific in this space, and I'm not making any promises for the future either.

But I am making some changes.  Firstly, the blog name.  Long overdue, I have not been solo trekking through recurrent miscarriage for a very long time (and thankful for that!) but as I wasn't really posting much either it didn't seem a priority.  Keeping my head above water has been my main concern these past years, and as Louis has recently turned seven, I think I am successfully achieving that.  At the start of 2020, I would have said perhaps I am even swimming, and maybe even in a sort of direction (ok let's not get ahead of ourselves there).  But then Covid, and, you know.... back to head above water.  Which, I concede, is still better than drowning.

Thanks to living on a remote and isolated island (Australia) and living in a state that swiftly closed its borders to the rest of the country (in addition to closing them to the rest of the world) and has kept them closed (Western Australia) my life has already regained much of that which was lost, for which I thank my luck on a daily basis.  In fact, sometimes on a minute by minute basis.  Yes, I am that grateful.  To date, our state has had 9 deaths from Covid19 and today we have two active cases (neither of which is in hospital, both of whom are in mandatory hotel quarantine).  It's hard to believe the stark contrast of this experience as opposed to that of, well - the rest of the world, really (bar New Zealand).

Maybe (and maybe not, given my history of repeatedly abandoning this space shortly after returning) I will write about the 'lockdown' times, but for now, in this post, I'm mainly addressing the topic of changes relating to this blog.  So, I've come up for air, made a small amount of progress, gone back under a little bit and am coming up again now and having a look around.  

And here I be.

Yesterday I completed a marathon of survey responses to a parliamentary inquiry into autism.  Over three days I spent seven hours submitting answers to questions such as: What made you seek a diagnosis?  What was the process like? Were there any barriers to diagnosis?  Are there any benefits or downsides to diagnosis?  Do you have any suggestions as to how the health care system/mental health system/education system could be improved to better support autistic people?  And then I answered them all again with Louis as the voice behind the experience.

Obviously one could write a book with the words it would take to give thorough, considered responses to those questions.  At the very least, a doctoral thesis.  As it was, I had a short deadline, having somehow missed the earlier memos, and only six days to get the job done.  I was just getting into the meaty parts when I had to pause and collect Louis from the school bus, and of course when I returned to the iPad and facebook page that had linked me to this survey, POOF, it had vanished along with the previous hour and a half of input.

Ugh.  Along with my enthusiasm for beginning again.  I dashed off a quick email to the folk organising the survey's data collection and collation and let them know of my misery, unhappiness and despair.  They responded quickly, informing me that my partial submission had been received (hooray!) and I could continue from there, and they would match the second portion to the first.

So the next day I began again but this time I saved my responses as I went along and where better to safely put them but in a draft blog post?  On the third day, I completed the task and submitted the survey.  My draft blog post at that time was almost 5,000 words, and that is not counting the front half that was swallowed before I could save any of it.

And after spending so much time and effort and headspace in this realm, I realised there was still so much more thinking and writing to do on this topic.  That I could revive this space, and do it here.  So today I spent a few hours trying to figure out how to work the new block editing process in wordpress (and failing, going back to having to install the classic editor), updating plug ins and themes etc, replacing the front page image and updating 'about' by adding in the Part Two.  [I'm not erasing the past, I'm just tacking the future on top.  If it's a bit messy, so what].  And of course, changing the name.  Which came to me like a bolt out of the blue almost a week ago, before I'd even thought to come back here and pick up the pen (so to speak).  I did a quick google on the Blunt Optic name and only found one hit, a You Tube channel which didn't have anything to do with autism as far as I could see.  So I hope I haven't stolen anyone's TM or anything, and if I have, please contact me before you file the lawsuit and I'll happily rethink the title.

Most of the blogs I read during the infertility days have closed or are dormant and have been so a long time.  But there is one writer I still follow, who writes regularly, and I have noticed that she has commented on receiving a decent amount of responses to her work that are combative in some way.  And she feels like she has a growing need to censor what she says, or explain it in such as way as to justify her position without causing offence or hurt feeling or a backlash of ire.  This makes me feel sad on her behalf.  And tired just thinking about the energy that would have to be spent on the curation and polishing up of a watertight post.

If I felt as though I had to do that here, I would either not write or I would not publish. I am of a mind that as long as I am not promulgating hate speech or the like, if you don't agree, then keep on scrolling, and let's leave it at that. I've spent my entire life having to tone down what I say and how I say it in order to be acceptable to other people.  I want this to be the space of freedom of expression.  Freedom to be me, and for that me to be accepted for who I am and what I am saying.  Somewhere I don't have to explain or justify or defend my position or views.  Where I can relate my experiences of the world as they have been lived by me, and feel safe to do so.  Perhaps a place I can even feel heard.  And maybe one day, understood. 

But at least for now, my aim is to write what I think and feel about the experience of living life with autism (as an autistic person and an autistic parent, and as a parent of an autistic child) without being attacked for using the 'wrong' language or whatever.  So please don't @ me; leave the tone police at home, etc et al.  

And let's begin.

Decisions.  Here is another one.  I pay $186 annually for this blog to be hosted.  I write in it twice in three years.  Now if I want an SSL certificate, it will add a cost of between $50-120 (depending on which level I choose- more decisions).

I have realised decisions seem to be great impediments to action for me.  I deliberate extensively, in pursuit of the 'right' one.  But how to decide on even the meaning or value of 'right'?  The most efficient?  (and how is that term judged, and who the judger?) The one that gives most benefit? (to whom?  By what standard?).  To choose becomes mired in the need to define, to understand, to analyse the whole basis of my value systems.  To examine from where they arose, to question whether they still now serve me.  To listen to the stories I tell myself and decide if they are worth repeating, or whether new ones would bear more fruit.

For those actions or processes to occur, I need vast amounts of time and space in which nothing else is required of my mind.  Solitude, in peace and quiet, so that my nervous system does not have to strain against the overwhelming barrage of input that it is simply otherwise unable to filter adequately.

Louis was born five and a half years ago.  I have posted about him twice, the last time at three months.  The silence in between has been about nothing more than the sheer relentlessness of parenting, of losing the time and space in which to process the stories that have developed along the way.  And nothing less than how to make decisions: about how to spend my energy and time - to what do I choose to give attention? This is a story about loss and also about gain and the decision I make now is to tell this version, in this way - so that some things will be said, and other things will be left unsaid.  Leaving things unsaid jars with the perfectionist part of myself, the one that can't bear to leave undocumented, unexplained or unconnected every single iota that passes into my consciousness.  And yet, I am doing it anyway, because otherwise the silence will continue and nothing at all will be said.  Life is a series of compromises, if nothing else.

In losing that connection to/with my sense of self and my ability to expend much energy at all on anything else but sheer survival, I have gained a vast knowledge of my self.  My new self - stripped down, pared back, bare bones, essentials.  This new self, however, is still intimately connected to the old self, and a particular revelation uncovered in my present life also makes a new sense of re-interpreting stories of my old self. So that in fact I have reshaped much of my self evaluation through this new lens and as a result, once I made it through the mental health crises of years 2.5-4.5, I am much more accepting of who I am and more inclined to meet my needs with generosity and kindness.

Therefore, although the presence of Louis in my life created so much trauma as to almost tear me apart, it also granted me the gift of reassembling myself with new information, that created a much more identifiable and understandable whole than I was currently working with.

Louis was a 'difficult' baby.  He ate all the time, he slept erratically.  He needed to be strapped to me for security at all times.  He maybe had colic or reflux or something that unsettled him and he could not sleep lying down for the first six months, which required I hold him and attempt to sleep sitting up.  He did not sleep through the night until he was 2.5 years.  My sleep deprivation levels were off the charts.

And yet, these years were easier than the following 2.5, when I may have got a little more sleep but the waking hours were even more fraught.  Among many other discomforts, I was thrust into the world of mothers via playgroup (not my natural habitat).  Louis caught every cold going and I caught them too.  It was obvious our immune systems were not as robust as other folks, and whenever he got sick (which was 50- 75% of the time- and still is, by the way) his anxiety levels would rise, his OCD would get out of control, he would become demanding, aggressive, obstructive, oppositional in the extreme, and these behaviours were very draining especially when I was also ill and had not much to give.

You may well be guessing that things were adding up, and you would be right.  To me, they added up to a clear case of Autism Spectrum Disorder, and so I began putting the wheels in motion for the diagnosis.  Thankfully the process only took six months, mostly due to having excellent professionals on our side, and one who was pivotal to our cause (the psychologist) had been my friend since high school.  At our first "take a look at this" appointment, Louis was 2.5, and six months later he had a diagnosis of High Functioning ASD level 2.  By the end of that year (3.5) he was on a National Disability Insurance Scheme which gave us $13,000 a year to cover therapy costs and he began right away.

As I slowly unravelled further (still unable to spend much time in solitude and feeling as though I was literally being driven mad from it - at one point I was beginning to dissociate pretty badly), I also dove deep into adult autism blogs in an attempt to make sense of autism - what it was, what it meant, the myriad ways in which it could manifest, what you 'did' with it - and what I discovered was like an illumination from a lighthouse on the darkest night.  It stood out like a beacon (of hope? of truth? of reality?) or a lightning bolt from the sky.  Of course!  Suddenly my whole life made sense as I realised that I am autistic too.

And there is much more to say, which will not be said in this post, and perhaps never.  Many interconnected threads - of ideas, of examples, of explanations, of experiences.  But this is the bare bones of that gap.  Louis was born, he was (is) autistic and his behaviours were (are) difficult and demanding.  I am autistic (though late to the memo) and my coping strategies (unbeknownst to me for what they were, being late to the memo) were dismantled by Louis' arrival and his demeanour and his ever-presence.  I found myself in autistic burnout and with that revelation discovered the underlying explanation for so much of my life's experiences, and my interpretation of the world around me.  From the suffering came the gift.  

A new journey has begun, and I embark upon it as my authentic self.

I don't know if my brain can still work this thing.

Ok.  Yes I can.  I see by the date of my previous post it has been close to FIVE YEARS since I posted here.  This will not be the post where I fill you in on the last five years, but it does mean I am almost ready to start figuring out how to remove everyone's passwords to make it readable to those of you who still remember how to get here even if you've forgotten the password.  And then it will be very interesting to see how long it takes (if ever) to get a comment.  Because I'm not going to be marketing this, It's really just so I can get back into therapeutic writing.  So my target audience is me.  Anyone else is a bonus.

I have 25 mins left of babysitter.  Let's see what I can figure out in that time.

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 ok i'm in and back online but one handed typing with squirmy feed not conducive to newsy post.  expect more as soon as i can manage, plus pics.  Yay!!

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