Bureaucratic nightmares

Ok, my daughter is a “differently abled”/disabled/autistic/an amazing star and gorgeous being who requires a LOT of attention and supervision 1 on 1 capacity and assistance to do all the daily activities we take for granted or as being “normal”….I have been Blessed to receive the amazing help of a Being who totally connected with her and stayed to help me in Australia with her while i returned to Bali for a month to keep working on this project. I had in place funding and all that that was meant to support and pay him in return for helping me with my daughter with special and quite high needs. He said the money wasn’t the important thing to him but learning from the gifts my daughter brings… she is Unique i must say.He came into our life when i could see NO WAY FORWARD… towards seeing/achieving what God has asked of me – this Vision I have… I just gave everything up to God and said – Right God, I can’t see any way here but if this is Your will then you will create the path in front of me. And it did, it happened. It’s still happening… He appeared and I shared my vision with him and he agreed to help me with my daughter.Thank GOD he was there… when the care agency dumped me who I’d been in the planning stages with for months to ensure my daughter’s care needs were going to be met and i wasn’t going to go into a state of isolation and overwhelm as had happened previously….He helped me and stuck with me and my daughter and took her around the shopping centre while I freaking gave it to these bureaucratic fucktards who decided to cease all the care shifts it had taken me quite some time to put in place and arrange – and WITH ZERO NOTICE.Like,.. no one had turned up that day, and I’m wondering why… and then later in the morning i get to check the email and see that because we were uncontactable over the Easter weekend and I’d arrived back to Townsville a day late after having car troubles and deciding it was better to stay a night in a hotel rather than drive through and risk my family’s safety on the road at night… that was too much for them. And also because I didn’t do THEIR job which was to check in with the carer I HAD lined up previously who ended up for “personal reasons” not being able to turn up to her shifts the first week they were meant to start in Cairns… that she was indeed ready to start and all that. I had just told them what I wanted, and told her… And for some reason – they couldn’t seem to communicate with each other… and I really don’t need to do more “volunteer work” for an agency who’s meant to be be BEING paid to arrange all this SHITE.So one cranky fucker who can’t do their job caused all my daughter’s fucking care arrangements to come tumbling the fuck down and reduce me to zero AGAIN looking after her – when I’d been through Everything with them – the training videos I’d made yada yada yada… And with NO NOTICE, leave me with Nothing.—— Silence ——-If Teo hadn’t been there – I would have CRUMBLED. I hadn’t had a break for several months even though I did have live-in help with her in Asia – I still had to be Always-watching and Available (if you know what i mean)…. I could never actually just Switch Off. Which IS what my body and mind needed… and had been telling me for a while to do. That’s WHY i wanted to ENSURE the care arrangements were READY – BEFORE I brought her back to Australia.Total Backfire… Number One. Amidst having a freaking breakdown in the local shopping centre (while Teo took my daughter on a tour of Target Toymania), I somehow scrambled and found another agency – or Support Co-ordinator actually who agreed to help us find another support Agency. I didn’t have TIME to ram it up the other agency’s arse right at that time because I was flat out wondering how or who the fuck was going to help with my daughter…. And the Support Co-ordinator we chose looked around for another agency who would be able to provide care workers and employ Teo who would live with us and stay overnight to supervise Freyr so she wasn’t alone and so my brother didn’t have to have us stay in his house (he’d already said her noise and everything was too much for him – which I understand)…So though i did have to extend my stay and change my flights, I was happy and satisfied that this care agency had stepped up/stepped in and agreed to employ Teo (though he still had to go through their employment process and checks as any other employee) … They were going to employ him, everything was in place, he was doing the Compulsory First Aid certificate the day I left Australia… everything was good.So when i first came back here to Bali I was in a quite elated state and really amazed and grateful for the fact that i was back in Bali, with time to myself, my home, and my one week all-you-can-eat yoga pass at Serenity in Canggu and just soaking up the feeling of being blissfully free and unencumbered by constantly having to monitor my daughter’s behaviour; what she’s doing; supervise the freaking agency care workers etc etc. It was all lifted from me – for the first time I did feel AAAAAAAH, such relief 🙂 and that I had the time to totally FOCUS on bringing out this project.I mean, this person had enabled me to go out for my walks at 5.30 or whatever time in the morning… allowed me to go and lock myself in the walk-in robe and journal madly… do all the talking i needed to do with the care agency and their reps, ignore strange looks/blank faces/dumb questions of the careworkers’ that came in to work with my daughter … and still now Focus my Vision… begin to network and COMMUNICATE for the Reality of my Project… He just stepped into my life like a divine Angel. …  Fast Forward 6 weeks …I’m about to face court in 2.5 weeks (now in 2 days), or this Angel i mentioned is… for losing patience and smacking my daughter… When I did everything i could to ensure this Angel/Being was going to be looked after – that he’d be paid, have one night off a week totally when another carer would come in and stay overnight… had it all set up with the agency and our funding (or so i thought) when I left to Bali.I called every monday to check on things – and they NEVER thought it important to tell me that they hadn’t been able to provide overnight care shifts for him…. That they hadn’t yet put him on the roster (they kept saying he was GOING TO BE ON/EMPLOYED in a few days yadah yadah yada… they would double up his shifts so that he was back paid for the shifts he hadn’t been paid for… all this and I come back to find he STILL hasn’t been paid but worse, they hadn’t put in place the respite for him and he’d lost his shit with her. And WORSE – they hadn’t told Me OR the Support Co-ordinator who was meant to (like the name says) Co-ordinate her support… KIND OF IMPORTANT….!!!!… I lose my shit after 4-5 days straight with her let alone 4 weeks…. And i feel like i’ve totally abused this person/angel’s Trust and Generosity…. And the care agency just flat out denies they ever said they were going to employ him…. These are the things that in Reality make me reach my BREAKING POINT and that Agency got a pretty Big Whopping Piece of my mind…Total Backfire… Number Two.To top it off I then had Child Safety breathing down my neck saying he can’t stay in the house with us anymore….You know, The sadistic part of me wants to set up a BigBrother house with my daughter where then EACH ONE of these fucking bureaucrats comes in a spends 7 days with her in the house … and see how long it takes them to LOSE THEIR SHIT and they will fucking UNDERSTAND then what I’m saying and what I’m fucking on about.I mean, my daughter is beautiful – she fucking ROCKS – but to deal with her ALONE….. Let’s just not go there. She needs people on rotation looking after her (3-4 hours max each) to JUST KEEP UP. To be on HER LEVEL… That’s the Reality.Family Environments CAN provide that with some help/training/support and I’m finding it makes sense more and more now… that’s how I’ve survived in Asia and why i fled Australia a year and a half ago – because i was fucking losing it after 15 years of perpetual toddler-dom. …Being in a family gives a variety of people/activities for her attentions/interest to bounce off. (And I’m not the one constantly saying “no Freyr, no Freyr, No FREYR!)And that is Why I AM HERE. To set up FAMILY SUPPORT ENVIRONMENTS … Free of Bureaucratic Faucktardom… But where Fucktards can come (at a big fucking ticket price) and actually Learn what it is to approach people with “disabilities” as a Human Being WITH a Heart and UNDERSTANDING (which they will surely develop) of what it is in fact like to be in a Carer role/ Position….
What the implications of the policies they make in government offices might actually have on people’s LIVES.I Love the one they’ve just made enabling families to only have 28 days/night a year respite maximum. That’s going to be Hilarious. Actually, I’m going to hardwire in the Parliament house speaker system the noises my daughter makes and have them playing (365 minus 28) days a year… Just so they UNDERSTAND what they have just DONE and HOW that affects someone like me who can just get by with 72 nights/year. My hope is that through the freedom my project will give me, i won’t have to deal with them AS MUCH…. And I certainly won’t feel “cornered” in their world of dictates and Heartless agendas and policies.I do need support though “in the meantime” to and while i Establish WHAT this Project is Meant to Be about and In it’s Unfolding… I hoped the funding we receive now IN Australia COULD help me to GET this business of a Life for Myself Up and Running…I could just GO BUSH and do this thing For Myself and not worry about anyone else. But look at what people like myself are going through!!! Aren’t we here To Make a Difference in this World? To help End Suffering?I believe that It TAKES FAMILY AND PEOPLE WORKING TOGETHER to create a Truly Enriching and Nurturing environment where we CAN be Ourselves… Where we CAN let go a bit more of this feeling or pressure that’s put upon us is the ‘Western World’ of Who we need to be for our “kids”; What OUR responsibility is… It’s so different in Asia… and I KNOW that our special kids are Here to bring about or bridge this change of consciousness and awareness about how we live our lives.I think it’s time we learned to Share that Responsibility…I don’t know if government and bureaucracy will ever COME TO THE TABLE around what actually is Heartfelt Disability Care … What a Carer Role IS in fact… and how they presently distinguish the separation of powers between an “employee” and a “family member” who provides care for someone with a disability (as I’ve been discovering directly).I won’t tolerate Being treated as a “consumer” of their fucked up services.My daughter Has a GOD-GIVEN right to Be ALIVE and Co-exist on this Planet with other Beings and That Right is NOT going to be Governed by “their” pathetic rules, bottom lines, incompetence (as outlined above) and subjective ideas about Who OR What constitutes FAMILY in MY Environment where I’ve been LEFT with SOLE CARE of a HIGH NEEDS person with a disability. (Again thanks to system fail/Total BACKFIRE Number Three… where I went to court to ask that her father take some responsibility for her life and care and instead end up being awarded SOLE PARENTAL RESPONSIBILITY)I just have this overwhelming ANGER and FRUSTRATION at what the SYSTEM DOES to people in my situation – how it forces us into these fucking fucked up stupid roles we are “supposed” to play….. Sorry But FUCK THAT.I’m trying to say this in a loving way and have just asked for coaching around that… so be Prepared people for what is going to eventuate and I should also prepare myself most of all — Let’s hope. No, let’s TRUST that God is going to and WILL … Put in My Heart at Exactly the RIGHT Time what it is these bureaucratic agencies need to hear and inspire me at the Right time to say exactly what needs to be said – whether its in a court room, to the media, in these blog posts, or WHATEVER it is that is part of God’s Divine plan for my life/our lives. And Let’s pray that S/He enables Me and Other families to enact and Bring this Vision to life and Begin living in a supportive co-creative FUN way through each and all our lives and individual expressions and talents we can share and help others to share. …If you would like to find out more about what I am setting up and aim to establish; Whether you are a family who cares for a differently-abled person, a volunteer interested in helping and living in community with some super cool cats and their extra-ordinary friends or are a person skilled and experienced in an area of development we are working on and would be interested in offering your knowledge, skills and expertise in the form of a working holiday – where you will receive the best and most awesome and divine pampering, food, wine, kombucha, kefir or coconut water and cosy cute place to stay…Contact Us HEREThat’s all for now folks…One last thing…
It has to be said:

I_am_part_of_Spirit
Everyday I’m learning to be empowered and strengthened and Activated to create an Awesome and Positive future for my daughter and myself with others.

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