I made it worse

I found an old poem this morning – one from the vaults.

Here’s the information you need to know:

  • I believe that autism may be the next evolution of humanity
  • at the time I wrote the poem I did not know that I was autistic
  • I knew my offspring was autistic
  • in 2002 there wasn’t the open talk about autism that there now is
  • I didn’t agree with the abiding view that autistic people were cold and robotic, but there wasn’t much else being presented to me in literature, media, etc. I just thought my offspring was unique, and I was broken.

So, I wrote a poem about rigid thinking, robo-talk, being a cog in a universal machine.

I got the poem out this morning, because I’d made a promise to my neuro-diverse accounta-buddies that I’d rewrite an old poem today.

Readers, I made a huge mess. Huge. I don’t have a vision of what the next evolution might look like. If it’s me, we’ll have a humanity that’s overly sensitive to smell, noise, crowds, vibes in rooms and around people, textures, who can see below the surface of what people are saying and doesn’t have the sense to ignore it. I’m the person who sees the disconnect between what a group says they’re about, and how they’re actually behaving, and asks awkward questions about that.

If it’s my offspring, we will be non-verbal, highly amused by a lot of humanity, quietly going about their own pursuits, and not giving a hoot what anyone else thinks.

Likely, as a species, we will have a hard time expressing and identifying emotions. Sort of like Mr Spock from Star Trek, who was a role model in my formative years.

Will we get to the stars that way? We might well do so, since there’s the cliche of autistic people being superb at computers, tech, and the like (not me). We might be a kinder species, a more honest one, acting as we think and believe, rather than social niceties.

I wanted to marry this nebulous idea somehow to the Age of Aquarius, at least in the draft I have now. Not only the hippie, sharing, caring, save the earth side of Aquarius, but the ‘needs of the many outweigh the needs of the few, or the one’ loss of individual freedoms and rights that we are seeing as we move into the Age of Aquarius.

Honestly, as the poem evolved on the page, I realised that I didn’t have a concrete vision on which to extrapolate and fly. And it showed.

Ah well, back into the vaults you go, wee poem, and let me haul out another ragged old thing. I hope this isn’t a ‘make everything I touch worse’ day. Because I have some housepainting, a penpal letter, and some witchery to do.

Trans Cranial Magnetic Stimulation Therapy – update 30/7/21

So here I am at the end of my second week(I think) of once-per-week treatment. Maybe my scalp loses its tolerance for the woodpeckering, but I came out with a headache, along with the usual neck ache. Honestly, TMS Australia, buy Glen Waverley the same neck bolster that Narre Warren have. I’m having to get weekly head, neck, and shoulders massage with my massage therapist to deal with the tension.

I have sent TMS Australia a request for the brilliant neck bolster, but so far, no action. The last purchase they made for Glen Waverley was a plain white waist-high cabinet to store the pillow covers in. By the way the doors don’t come together that well, I daresay it wasn’t an Ikea buy, but the Reject Shop.

Aaaaannyway, me. I am still holding steady with the depression, or the non-depression, or whatever this state is. I’ve said previously that I thought it would be ‘more’. I’m mostly in a non-sad state, just cruising along. No big swings either way. It’s still hard for me to identify emotions, and I think it always has been. It’s hard for me to recall how I felt about events in the moment. Autism? Inherited mild depression? Just born that way? Can I blame my astrological chart, with lots of Capricorn?

Whatever the case, I’m in neutral most of the time, so writing emotional poetry is hard for me. I….know how I felt about someone, how angry I’ve been. But happiness, joy? Slippery at best. Perhaps this leisurely life I lead, full of writing, reading, walks, fitness attempts, currently painting bits of the house, watching nature – maybe that’s contentedness.

A large gang of cockatoos are flying past my house. I thought post-TMS acute treatments would be me being as loud and as excitable as a cockatoo. Or as chatty and cheerful as a rainbow lorikeet. Mostly, it’s me, quiet, pottering, and not having suicidal ideation. It’s me not thinking everything too hard, and that the only way out is death. That death would be a nice rest.

The anxiety – well, sigh, it’s there. Yesterday was a busy day, and I ended up fried at the end of it. Brain and body are slow today, and the only reason there’s not generalised anxiety chatter going on, a whole row boat of ‘shoulds’, is that I’m simply too bloody tired, and have given myself permission to do not a lot today.

TMS works for me, and I’m holding steady at one treatment per week. I think the eventual plan is to go to one treatment every two weeks, but I have once a week booked in until mid-September. In half an hour, I’ll be taking a phone call from one of the in-house psychiatrists for a review.

Next week, I start art therapy, and I’m looking forward to that. There’s a whole lot of stuff inside that all the talk therapies in the world aren’t shifting, and I’m fed up with lugging all this junk around. Let’s see if art therapy can get at the places talking can’t.

Until next week, TMS-curious folx.

Trans Cranial Magnetic Stimulation Therapy – before session 21

Yesterday and today, I’ve questioned whether the anxiety treatment is working. Let’s face it, I’ve had several weeks of virtual mind-blank. Not thought about much, not felt much, just enjoyed NOT being depressed and anxious all the time. Sleeping better, doofing around. Certainly not getting a lot done.

The past couple of days, I’ve felt restless(let’s not discount that today is the Full Eclipse Moon in boundary-leaping, restless Sagittarius). Is this all there is? I’ve asked myself. What do I do with my brain if not the old trackways of depression, suicidal ideation, smothering sadness, and debilitating anxiety that prevented me from doing things I enjoy doing, like catching up with friends?

I’ve been prodding at an old story idea for a while now, just gently in the background, seeing if my mind can come at doing anything with it. I wrote it 2-3 years ago. It’s a Sleeping Beauty take, and if anyone’s waking up out of a long sleep, it’s sure enough me. However, the mind is still learning to relax, and doesn’t want to work. I can get no further along with the story idea. My go-to fix has always been ‘well, make it a poem then and tell 1/10 of what it could be, and be done with it’. And I’ve done that many times, truncating stories down to poems. But this is definitely a story, but I still don’t feel up to writing it.

I don’t feel up to writing much of anything. I feel disappointed. Will it always be this way now? Not sad, and not anxious, but not creative, either? And that gives me anxiety. Fucking hell. Stop that shit.

This is why I want a psychiatrist, or someone I can talk over this stuff with. How do I resurrect my mind and find myself again with new brain trackways?

I realise this is a more specific TMS post that others have been, but I have to be true to who I am. My dreams are full of ‘leave all that shit behind’ images and feelings, as well as a whole schwack of ‘outsider’, ‘lonely’, and ‘not fitting in’ stuff. It’s taken me two days to pull myself out of dream funks. This is my third day of strong ‘on the outside, never fitting in’ dreams, and definite aftertastes. This is my second day of trying to art journal some of it.

And even while I’m telling myself ‘yes, that’s been your experience UP TILL RIGHT NOW, it doesn’t have to be THE FUTURE’, there’s another part of me resigned to ‘this is how it is in this lifetime, for me’, a part that says ‘welcome to autism’, and another part saying ‘if we can just read the right book, find the right therapist, write the right book/poem/story, journal the right way, it can be different’.

How exactly do I find these new ways of thinking and being without my old crutches of depression and massive anxiety giving me ways to avoid risk?

When I have to change “mental ill health” to “I don’t know how”, and then even “I’m not doing X apparently because I don’t want to”, how do I live with that? How do I learn to risk all over again, the way I used to in my 20’s. Write those stories, send them out. Send them out again. Keep going. Be bloody minded about it.

I have more energy than I did a month ago. I don’t want to be mean to myself, but come on, Satya, there’s only so many jigsaw puzzles, and books. And none of them are filling the hole. Surely there’s a way to find the new pathways, and journey down them.

Help!

Poem: The Economic Animals

The Animals by Josephine Jacobsen | Poetry Foundation – just the title of this sent me off down rant path.

I have a Simian Line on my left hand:

cutting across the palm like I’ve held a knife

blade-end hard.

Used to be, doctors thought only monkeys

and those with Down’s Syndrome had this line.

Got that extra gene?

You must be lesser.

You are different.

You are not human.

You are an ape.

Yes, I’m an ape –

orangutan red hair,

brown gorilla eyes,

active mind of a chimp,

chatter of spider monkey.

It’s been a hard road,

making doctors see those with different minds

as humans.

Not animals,

not useless lumps to be locked away,

experimented upon.

Visit an old asylum,

listen to the shriek-coated walls.

The government has a scheme

(picture a villian rubbing their hands together)

to help those economic units…

I mean, disabled creatures,

I mean, those with a disability.

The funding is being slashed.

What was on offer

can no longer be.

Will my offpsring ever leave home?

Will someone care for them as I have?

If I were paid as support workers are paid –

if.

I’d be rich.

Yes, I’ll have fifty dollars for walking near my offspring

as they do their own shopping.

The scheme is to be slashed,

maybe with that knife I never held as a child.

That line on my hand sees black and white.

Soon the asylums will be back,

as an economic good move.

It’s only a short walk from there

to the camps, the ovens,

a world cleansed of the different.

Finally, my offspring can be useful,

as soap.

*****

I know it’s a rant, not really a poem.

But I’ve just read a letter from the head of our service provider, talking about changes to the National Disability Insurance Scheme. These changes will exclude lower income families from participating, push funding back on families. “This is what happens when you let economists design the system. People as widgets, not people.”

Am I furious? You’d better fucking believe it. I have autism. I am not on the NDIS. I only received my diagnosis 3 years ago. I mostly function in the world. I have an adult offspring who has autism, a mild intellectual impairment, a hearing impairment, and is non-verbal, and a language processing disorder. They are non-binary.

I’m fucking outraged on their behalf, and mine as carer, mother, and guardian.

The Daily Blog – Carer Network

I am not only a mother, wife, sister, friend, grandma, dancer(tap, ballroom, cabaret and Fat Chance belly dance), yogini, writer, witch, poet, flaneur, and pagan, I’m also a carer.

The Fates decided that being a Mum wasn’t enough. I should also be intimately acquainted with hearing impairment, hearing aids, cochlear implants, deafness, Auslan, Key Word Sign, and how difficult the letter ‘s’ is for deaf people. The Fates also thought I should intimately know autism, intellectual impairment, what being non-verbal is like, and just how bloody stubborn male Taureans can be. Oh, and let’s throw in gender fluidity, and being gay.

I am the primary carer of my younger adult offspring.

Today, I went on my first Pathways For Carers walk along Mullum Creek, with a group of people affiliated mainly with Villa Maria. Our family’s service provider is Interchange Outer East. The guest speaker from Villa Maria talked about carer supports, and VM seem to have a lot more going on that does IOE. And I feel like I need more support than does my offspring. Burnt out is an understatement.

While on this walk, which wasn’t long enough for my tastes, nor slow enough to really take in my surrounds, I saw a cardboard box on a bench, the kind dozen bottles of wine come on. Scattered nearby was a bottle of wine, a can of mixed drink, and an empty packet of cigarettes. On the path was an abandoned pair of men’s underpants. Looks like someone had a big night out. It amused me enough to take photos and post them to facebook. No one else in the group even remarked upon the scene.

I sincerely hope that this is a group that will end up suiting me, and I won’t feel alienated….oh let’s face it, I feel that wherever I go, in all groups. I don’t know if it’s a spectrum thing, or just me. But I watch myself trying to fit in, but standing out at every utterance. I know, I know ‘normal’ is a dryer setting. Just once, though, I’d like to slide into a group and just be part of it without observing myself, shutting up about 90% of my life so I don’t appear too weird, or finding myself bored with mundane conversation. Just once.

Poem: Dear Government

Thankyou for this rollout:

this National Disability Insurance Scheme

that has hampered us with a full caliper of phone calls,

and five wheelchairs of paperwork.

Thankyou for the money

for which we dance like so many can’t:

waltzes, cha-cha, backsteps, flips.

I’m just wondering, though,

when you find the people to step in

before I fall and die in harness.

Let’s face it, government –

providers, carers, support workers,

call yourselves what you like,

I’m flattered it takes a team of fifteen

to do what I do every day.

I didn’t ask for this,

and don’t come at me with karmic choices,

or I’ll ram some dogma so far

up your horse ass donkeybrain,

you’ll try to scream and it’ll come out a bleat.

Sorry if you do that already.

How would I know

what anyone does behind closed doors?

Isn’t there anyone who will person up?

See what I did there with the non-gendered thing?

That’s another thing you’ll have to get used to.

They’re gender fluid, but that’s not a disability.

It’s the other labels that you demand:

autism, deaf, IQ under par, non-verbal.

Do any of them help when dealing with a person?

Where does eccentricity leave off anyway,

and a disorder begin?

Do you have a tidy pamphlet I could download

from the undownloadable files?

Please let me know when the mob

arrives

to take over my job.

I’ve documentation for days.

Maybe you’d like to do a side tour

of the things wrong with my body

that stress has caused?

No?

No one ever does.

Isn’t slavery illegal?

Isn’t there a law, or two?

Please let me know, dear government,

when you have the heavy moving equipment ready

for this invisible load.

The Daily Blog

I know today’s nowhere near finished. It’s only 1.10pm. Has anything remarkable happened? Only this: my adult disabled offspring has a new support worker, whom I shall call DoubleBounce, because that’s the sign we’ve given him to indicate his name and person. When I asked him last week what he liked doing, so I could think up a sign for his name, he mentioned he liked basketball, so I’ve given him two hand bounces in indicate a bouncing basketball. DoubleBounce is a nice young man, and I was super clear last week, that in a move to get TwentiesPerson more ready for leaving home, and independence, I was taking a step or two back from supervision, and planning each week’s activities. TP and DB and are upstairs, getting on well, and playing Nintendo, as far as I can tell. That’s just fine by me.

It’s new, this fully stating that I can’t handle it all any more. I’ve gritted my teeth and shouldered it for so long that saying ‘I don’t have any more to give’ is nerve-wracking, and a blessed relief. I feel guilty that I’m not getting them to take a Key Word Sign lesson online, or something, but quite frankly, I’m just not up to organising anything like that. I haven’t even organised PizzaBoy(husband) and I to start the Auslan course we paid for.

I’m hoping, in the next month, to start TP down the road to learning some Key Word Sign via their support workers. And me too. And the whole family. It’s a massive task, and I’d much rather have someone else organising this and me just show up. But it is what it is. Visioning TwentiesPerson independent, and making all the minute steps along that road are two different things.

Not that I even have a solid vision of what their independence and separate living arrangements might look like yet…. More research, more talking, more asking for help. Help! Help, help! I can’t do it any more!

Poem: Why Make It Harder?

WHY MAKE IT HARDER?

Why do that to yourself?

Why teach an old bitch new tricks?

It’s not as if he cares.

He can’t tell you.

They’ve told me for twenty five years:

not ‘boy’.

They’ve told me for twenty five years:

‘girl’.

They wanted to please their father,

so ‘boy’ to him, and the tolerance of car print pyjamas.

They wanted to please the speech therapist,

so ‘boy/girl’, and a glance to see

if they’d be punished for that.

They made choices with difficulty.

Perhaps they are a third, sixteenth,

twenty-seventh gender.

They have no words,

so I’ll not know.

There are no signs, no pictures

for where we’re treading.

Maps long out of date

say ‘everything’s fine’

when there may well be dragons

over the horizon.

I have to believe that,

on some level,

I am trying to make the world

see them as they are.

So they/them it is,

and all you old bitches,

all you old dogs

can learn a new trick or two.

It’s hard,

but maybe next lifetime,

it’ll be easy,

and it won’t matter so damned much’

who’s wearing blue or pink.

Remapping a place

I took MerPerson(my adult ‘son’ who is autistic, with a mild intellectual impairment, a hearing impairment, is non-verbal, and identifies as female/mermaid/merperson) to Forest Hills mall this morning. With Victoria coming out of stage 4 lockdown, their eyes widened and they smiled when I told them yesterday that Kmart, Target, and JB Hi Fi were open, but that Puffing Billy was still shut. I thought they’d go out with their support worker yesterday, but no, they saved that treat for me.

We went into a few shops, but it was more like they wanted to re-map the mall in their head. They hadn’t visited it for maybe five months, and while they have a prodigious memory for things important to them, it seemed that they wanted to reassure themself that they still knew their way around, and things were where they were meant to be. A couple of shops had closed, and re-opened as something else, which did not please them.

I wonder if we’ll also do this at the other shopping centres they frequent. They are still compliant about hand sanitising, wearing a mask, and keeping 1.5m away from other people. They have understood that everything is not back to normal yet, and so these things are to be endured.

They bought two new dvds at JB Hi-Fi, and are watching them this afternoon. They are in fine voice upstairs, and cheerfully talking to themself in whatever language it is they use. All the intonation of speech(English), but not English words, or any known language. I know. I took a recording of them to Monash University’s language lab many years ago.