Autism – phonakins

Frog Ponds Rock

Remembering Kim Foale

Ahh the Golden days of mummy blogging – or whatever it was us peripherical misfit non-mummy bloggers were doing at the times. Whatever it was it really was about the friends we made along the way, and one of them was Kim of Frog Ponds Rock, kinda a mummy figure to many of us, Mum to Veronica, and one of the first middle aged women I knew diagnosed with Autism (Think she was fifty at the time) with many more of the blogging crowd to follow. They’re in Tasmania, and I had the privilege to be picked up from the airport by Kim and visit her home and studio and visit Veronica at home – she was pregnant with her youngest who’s in highschool now. I was down for a speech pathology conference, it wasn’t a great time in my life but I remember those visits fondly. I was devastated when Veronica’s house burnt down, it was always a work in progress before that and I remember parts of it from my visit and ugh, why do bad things happen to good people? (Check your smoke alarms, it’s the reason the humans were able to get out at least).

This is an amazing tribute to Kim. I was sitting with my own mum who’s in the rehab hospital when I saw Veronica’s post that Kim had died that morning. Kim was 60. Mum’s 69 on Thursday and was in great health until the sudden brain bleed January 28, with another a few weeks later. She’s back in good health now, but is disabled by it, will probably have to use a wheelchair for the rest of her life, needs hoisting in and out of bed, is getting function back in her right hand – at least she’s left dominant right? But for someone who truly prefers to do things for herself it’s a huge adjustment, all the other stuff aside.

So mum and I were watching a gameshow, she was back in bed after a busy day at rehab – gym, arm exercises etc. I as scrolling my phone and the post seemed so sudden, because it was. Kim had been in hospital but was meant to be getting out that morning.

I know Veronica’s worries are now with her father – how will he cope with her suddenly gone, no matter how beautifully maddening Kim could be at times with her wonderful creativity and neurodivergence and just being a good soul. I worry the same for Dad. He’s been in crisis mode since the stroke, and hasn’t really come down from it. Still visiting every day. Still off work, but not ready to retire officially, even though age and his own health wise, let alone mum’s would make sense. He’s still overwhelmed about the prospect of renovating the house to get mum back but I think is more confronted by the idea of her going to a nursing home, either while that’s done or permanently. And I worry what would become of him then?

Mum keeps saying her first reaction to the rehab teach recommending aged care was that she’s not old. And she’s not. She’s also the healthy one, the one that looked after herself, did all the right things. And was there for everyone else. So being the one needing care is a big adjustment.

I still hope to get her home. But in the meantime, her wheelchair’s been approved (manual but she’s warming to the idea of getting the power adaptation) and we’ve been looking at vehicles to get her around in regardless of where she’s spending the night – the Voxy is one cool little option dad’s warming to with encouragement.

So, it’s all a big thing, but something I’m even more grateful for after Kim’s sudden passing. Grateful we’ve had the last four months no matter how hard they’ve been and that we’ll have whatever time is ahead. All mum can do is keep her blood pressure low (it was never high) and no take anything blood thinning to have to best chance of not having another bleed. But it may be sudden or, like I said to her, we might have another 20 years ahead of us and I want to get the house and equipment right if I’m going to be caring for her til I’m in MY sixties.

So, we take it as it comes. We enjoy the little things, eat the little cakes, look after our own health so we can all look after each other. Gp for my partner today, looking into some of his own health issues after years of ignoring them. I’ll see my own GP Friday for my scripts and will probably get the form for my annual bloodwork that hopefully still says that I many be fat but my numbers look good. Harassing my father to try to follow up things so he can care for mum – physio mostly since his own knees are not young and spritely any more, and trying to help my sister to where I can.

And of course Maxi. Maxi just has sensitive skin so it’s baths and creams and anti-allergy pills wrapped in cheese for him.

Go buy some soap from Veronica, or food for her foster kitties. Or help me and my little family out here.

Get a haircut (not in this ecconomy)

When I lived in Canberra, I’d go to Jus Cuts every school holidays for a hair cut. Often in a lunch break to Woden Plaza, while my schedule was quiet. It wasn’t a luxury, I just didn’t care much for fuss, so it was enough. Then I’d do my box colour, slightly plum or purple and be right for 3 months.

Going to the mall in my lunch break was one of the weird things I needed to do for my autistic coping, though I didn’t know it til I moved to Sydney and my manager told me I needed to have lunch with the other members of the therapy team and I baulked, realising that that 30-60 minutes of lunch was needed for me to reset so I could deal with people for the rest of the day.

This is why stable employment is important for the Autistic or ADHD adult. We need to know it’s okay to spend our lunch breaks regathering, or that Fridays are casual, we need to know we can keep that routine and have that time to decompress before performing our craft (for me Speech Pathology – I was good at it) for the world.

I had an OT colleague who went for a run around the oval next to the old school we worked in, self-regulating, so she could be the professional all the parents needed once we clocked back on.

I loved my misfit, public servant colleagues.

So I got my hair cut today, and my face waxed, as is needed when you’re a stepgramma. $100 or so down, but I feel better for it. It’s nice to look after yourself, even if it’s painful.

I think I’ll get my sister to repurple me this time, so she can do the bleach. I need to be there for her, given the NDIA being cunts and not even respecting her request for an appointment to be made before calling her to reject the extra support we wanted for my nephew.

Routine and Pacing – staying sane when you get a little off

Touch grass they say – but don’t repeatedly kick the same toe on things, it gets tiring after awhile, and it doesn’t give it a chance to heal and somehow you’re still hobbling weeks later.

So I got overloaded, took on too much mental load, spread myself too thin, so I’m cutting back on somethings, to make life sustainable.

I’m ensuring I follow my little routine, that includes meds and white hot chocolates, and winding down after dinner. This means I’ll be declining after 6pm meetings from now til the conference in June. I’ll be showered and onesied on time, meds around nine, white hot chocolate before that. Breakfast has gone back to porridge sachets for winter – except this week since my partner bought a dozen hot cross buns I’m trying to get through!

I’m going to go back to (close to) daily Japanese practice and streaming. Started on a new vocab game yesterday. So, the plan is an hour of practice followed by variety game streaming a few mornings a week, no real schedule it’ll depend on everything going on around me and of course it’s more about getting back into good habits that nourish me – and the Japanese language has always been that for me. Recommendations for websites and programs to use are more than welcome – I know Duolingo did that things with more AI use since I was last using it, so while I’ll probably tap into that a little, I’m all for a scattered approach. I’ll set up my second cam for colouring and kana practice, and perhaps my cheap graphics tablet if I can find a kanji program that would work well with pen input rather than mouse. There was a program I had on an emulator that I was going to use with that but then I did a system reinstall and it’s gone.

Also keen to fill this board with stuff – Amazon slips or pictures from frens or whatever may come. I’m pleased to say I’ve a couple of regular monthly supporters here, and it’s such a mood boost even though one’s for $1/month!

A thousand days – How’s the social cohesion?

A thousand days. A thousand days of the Albanese Labor government.

Have we been at all surprised, pleasantly or unpleasantly with Labor? I remember when they won the election in 2022 the nurse at my mental health and substance use program commenting that I must be happy with the result. I told her I was skeptical and we’ll see what happens.

Pleasantly, I’ve remained sober for that time, even the last few months since I stopped attending the support group and stopped taking Antabuse – the little drug that basically makes you allergic to alcohol and if you drink you literally feel like you’re dying. So that’s pleasant.

We’ve had a few changes in living arrangements, including having a baby in the house for 6 months while the stepkid lived with us at short notice. They seem to be going alright with their new independence, getting their own rental with bub has been great for them, even if the chaos surrounding and leading up to that was hard for everyone to deal with.

Got the other stepkid with us now. Generally life is quiet, though I’ve been busy with social media and other stuff working on the People Against Poverty Summit and associated stuff, along with the upcoming election. A sweetheart bought me a new chair from my wishlist, and I’ve been optimising my desk setup so it’s nice to be at my desk. Unfortunately we’re still down a car so I’m not getting out much, might end up borrowing one from a friend who seems to be up one, while my partner works on his.

Purple desk chair

Pacing myself is hard to relearn as I’ve picking up tasks, I’m noticing what wears me out, what’s easy to bounce back from, and what means I should probably just make a cup of hot chocolate and chill in front of old South Park. It’s amazingly nerve wracking at times putting myself out there.

I’m still actually saving for my assessment, putting something away each week, some from my pension and some from the paid work I’ve got doing socials for activisty things. Just enough so I hopefully don’t notice it and it slowly builds up without me knowing and later this year I’ll be ready to book something in and decide how exactly I want to approach it and what I want to get out of it.

Take care of you x

Hello HSC Maths, we meet again

I actually don’t have nightmares about maths exams, though they caused me many years of stress and tears in high school. It’s English that keeps coming back to haunt my dreams – scenarios such as having to re-sit the HSC papers otherwise they’ll take my degrees and years of work experience off me because I wasn’t validly in them. Or something.

I got a peek at the Standard and Advanced maths exams while supervising them Monday. They were the old Maths in Practice, Maths in Society and 2 Unit maths subjects from before the turn of the century. I did two unit in year 10, so that content was 26 years ago for me… gosh. I should have dopped maths after the 3 unit paper in year 11, but no, I was convinced (by who IDK) to continue to 4 unit and the horrors that came with that orange text book. As I said to the other supervisors on Monday, I failed the 4 unit exam by marks but it still scaled to mid nineties, so yeah, I’m told it was worth the feelings of failure.

I also confessed to the other supervisors, when they were saying they don’t understand why anyone would try to cheat, that I’d cheated in one maths test once – a Maths Olympiad paper in grade five, the sort of maths competition where the content was part of the HSC syllabus but they threw it at primary school kids to see what they could do. I really don’t know where the pressure came from in primary school for me. I felt like I HAD to top that exam for my school otherwise I wouldn’t be doing what I was supposed to do. Just like how I cried when I didn’t “top” the Basic Skills Test maths (Think NAPLAN now) for my school. Even though it wasn’t a test that was meant to impact anything. This is also the girl who cried in Kindy cos she had to stay home sick because she thought she’d get behind, even though she was reading and comprehending at three years old.

Apparently I was more boisterous before Kindergarten and then my school reports from grade one started calling me timid. And I blame the strict Kinder teacher. While she may never have had to discipline me in her classroom, I saw what happened to other kids – she smacked them and put them in the store room and other things that terrified me – and that was enough to make me submissive and scared.

Isn’t it fun to reflect on what made you the way you are today?