That is the name of my daughter’s favourite band which she watches and listens to repeatedly. In these times when the world Does seem to be turning into an inferno… especially being back here in Australia where the never-ending rabbit holes bureaucracy takes one down continue to pour milk into the cornflakes of my mind… What should be a simple process of getting support for my daughter… what should be set up as a service for citizens of a supposedly “civilised” society, is a freaking full time job extinguishing my quality of life and lowering the level of care and patience I have with my daughter and her daily care needs.
Just a few moments ago I was feeling stressed and going into a mild state of anxiety over thinking about what I need to do first today, whether I should drive my unregistered bus into town and stay a night in Lismore so I can get her to her mechanics appointment first thing in the morning to check what it might need to get roadworthied/registered (which shouldn’t be much but It’s been sitting for over a year at a friend’s place)… We have a doctor’s appointment thankfully in the afternoon at 4.15 at the university in Lismore so chances are, if we caught the public bus in to Lismore, we would miss the last one coming back at 5pm. The medical appointment is to get forms signed by doctors to qualify Freyr for the Disability Support Pension. We also need to get one signed to register her for the NDIS I was told yesterday over the phone when it was confirmed that I will have to begin a new application for Freyr to access NDIS.
Due to our residency being overseas, she was excluded from NDIS… and in order to get back some support, we need to be living in Australia (which as far as I’m concerned, we are as of nearly 2 weeks ago). But we can’t live in Australia until we Can access support! I mean, it’s a catch 22. How am I supposed to go through this process that could take up to three months…. without support??? I will go freakin crazy and end up in the looney bin. Plus I want to continue the overall project and for Freyr to be able to live with us in Indonesia – so I need to be spending my time to build a livelihood with my partner there… I’m not sure how I can continue to support Freyr there without Child Support income. It’s not like she’s going to “grow up” and become independent… but I will need to apply to the Magistrates court in order to get an Adult Child Maintenance Order for Child Support to Continue after she turns 18. Court could take up to 12 months, so how should I care for Freyr in that time? These questions and more will soon be answered by my magical fairy ball!….
I know God is watching over everything, but Jesus Christ! Human beings have managed to make every Thing SO FREAKING COMPLICATED!!
I think I just want to go back and live in Indonesia, but without Child Support income, how will I pay for my daughter’s expenses? $1400/month has enabled me to survive there: $300/month for a full-time care assistant and $180/month school fees for her day program, food, living, laundry and immigration fees and nappies: I’ve built a house there for Frey on land rented for the next 12.5 years (after receiving a payout for child support debt at the end of 2017) and am just getting to the stage of building a business and livelihood with my Indonesian partner… I would like to continue and develop that; Not have to come back here and have the next 9-12 months of my life taken up with senseless bureaucracy and stress from trying to manage my daughter’s welfare in an inhumane system!
I can’t be my daughter’s lifelong carer… I need to have some time to develop my own career and purpose. Just to be able to study and pursue what drives me in life… what I feel to develop. Is that being selfish?
Actually last week I broke down in Centrelink. That’s the only reason things got moving for us. I had had to fill out 4 sets of forms because the Carer payment and DSP (Disability Support Payment) take 42 or 70 days to process, and so we had to apply for Newstart and Youth Allowance to support us in the interim… and just when I was ready to press submit, a new page of required documents popped up like: Referee of my relationship status, proof of my earnings/assets from my former business which collapsed during the first court process I went through in 2014/15 to get child support, and something else… meanwhile Freyr is sitting rocking on her freaking chair next to me, bored out of her brain, trying to hack the Centrelink homepage to watch Youtube, and making repetitive noises/echolations … I just lost it and started screaming, crying, verging on complete total breakdown and surprise surprise, out walks a social worker.
Where was I going with this post?
It was actually intended to highlight how, when I go into anxiety, I try to find something to do like cleaning which brings me into my body. Of course, I have to leave Freyr alone to do that… which is what I did just before… I grabbed the breadboard that has gone black and started scrubbing it with the wire brush around the back of the bus near the tap… and my anxiety started dying down… I started to put things logically (i think) into my head and had the idea to just find a hotel/motel in Lismore where we could stay after the doctors appointment. Just then, I became aware of the very silent silence just beyond where my daughter had been sitting previously and sure enough… as I rounded the corner and peered into our bus… There she was, bag of DVDs someone had given us spread around and dry noodles being chomped on and scattered on the floor.
“Get Out Freyr!”
I just bloody cleaned the floor in there. (Yesterday).
On to the next thing… (while I’m cleaning the other thing)… on to the next thing. Peanut butter. That’s a messy one.
Anyway, how does she KNOW???
What radar does she have that can tell when I’ve turned my attention away for more than a few minutes? What triggers her Search and Destroy mechanism? Why can’t she just blow her nose and stop spreading snot everywhere as I write this?
I’m trying to capture this state, this element, whatever it is… this nervous state, this anxiety, this inferno… this mayhem I experience on a daily basis with my daughter in the hope that one day, someone in government will read it and realise the unnecessary shit they are putting carers through and just bloody TAKE ACTiON on what the bloody NDIS is supposed to do!
It’s supposed to give Carers their life back for a start! Enable us to reenter the workforce and contribute to society…. not be “trapped” in a caring role all our lives. Society demands that we pay for a place to live, pay for food, pay for services, pay to breathe nearly… So we should be enabled to pay our way also, earn a living and have access to career development and other such things. Enable people to create a Vision for their lives and help to create funding for sustainabale living options!!!!!!! At least one where we can have our basic needs met and can co-contribute in ways that reduce our livelihood costs which has gotta lessen our anxiety about life right?
I can tell you right now, my care of my daughter was Not sustainable when I lived in Australia before… which is why I moved overseas… where family friends offered to have us live with them and help support my daughter. It seemed more attractive than the putting her into State Care option… so we went with that at that time. But It’s pretty bloody hard living in a developing country. For Freyr (my daughter), it’s lovely! She has friends, she has people to help her get dressed, people to interact with her, no fridge to destroy, she can walk down the street and buy an icecream without raiding the shop which is usually protected by a metal “cage”, she can pat chickens, play in the dirt, help do laundry, and actually she had a school placement in Philippines which cost very little because it was set up specifically for kids with autism by an International charity. I could pay above a local living wage to the mum/primary helper and go away and take the time I needed to recover my nervous system… I also helped make repairs and set the family up with an asset they could then earn income from when we left. But general living standards-wise and for me being able to speak my own language and support/friends who understand me – it was very difficult and I didn’t really have a way of working or continuing my education there.
Now, or for the past 2 nearly 3 years living in Bali, Frey has been attending a local school and we have been living just on our Child Support income (after experiencing total disaster with our first NDIS plan where she was supposed to reside in australia with a friend in our residence for overnight and some care support). I have been learning about natural building and developing my skills for my future work and career and, like i said, can pay a carer to support Freyr so that I can have some independence and ability to live my own life. So now she is turning 18, and also with view to helping develop a post-school program in Bali with her school, and for her to make a transition where she can spend time living in Bali with me, And live in Australia and establish or join something that will progress her ability to have a life, funding and support here… I am encountering a quogmire where- unless we stay here; she won’t be eligable for NDIS and start the planning process for her future. But like I said, staying here and waiting for this process of assessment and eligability will mean mental collapse for me, instability of care for her, and loss of time and energy for me to develop/continue my/our livelihood in Indonesia.
So if some business person or politician or policy writer can at all make sense of this situation and write or hammer some sense into the bureaucratic nightmare I have become entrapped in, I would Really and Endearingly appreciate it!!
I can only hope that common sense prevails….
And in the meantime… I’m just going to keep writing and networking and developing our plan while we can be here and I’m not going insane, and just take lots of walks with her, go to the park, live off welfare handouts (how demoralising but gee we’re lucky living in Australia aren’t we) and hopefully find enough for Freyr to do and be involved with that we both don’t go crazy in this lovely bus of mine parked in a caravan park by a lovely river.
Freyr has just fallen asleep on my leg.
I’ve figured out something accidentally. She never does this…. what was in those noodles??
I think I’ve just actually been able to express a whole lot and unravel my own mind somewhat… to feel a sense of inner peace or clarity… I guess she’s picking up on that.