In 2015, I was experiencing Carer Burnout and could no longer sustain caring for my daughter Freyr who was 14 years old at the time. I was faced with putting her into State Care when at ‘the eleventh hour’ a friend of mine from the Philippines offered that I could come and live with their family and help to care for Freyr who has medium to high level intellectual disability and traits of Autism. I was humbled and accepted my friend’s offer and moved with Freyr to the Philippines in January 2016. And that was the beginning/start of our journey the past five years into a more inclusive and fulfilling fun life for my daughter and an eye-opening personal journey of learning, discovery and adaptation for myself. Though at times incredibly challenging, in terms of living conditions and unfamiliarity of language – we have been incredibly blessed and welcomed – and made “the best of things”… while ‘surviving’ only on income from Child Support which we received up until recently; Freyr has made many new friends and I have felt supported by living in the caring cultures of Philippines and Indonesia and have been able to cope with her care while also having the opportunity to develop my own learning in natural building with bamboo from local people and other families where we have stayed over the duration of the past nearly 5 years.
Carer burnout is not a “fun” experience for anyone to go through. From my own experience of severe anxiety just being in my daughter’s presence: shortness of breath, uncontrollable itching sensations in my shoulders and bouts of uncontrollable emotion: crying (more like wailing), shaking in my body and being unable to stand up; and just not being able to cope with my daughter’s constant demands and the smell of shit and piss any longer; to begging and pleading for support from Disability Services with only the response that “nothing was available” with services being cut prior to the “roll-out” of NDIS… I had no family support available, and I’d stopped taking my daughter to the respite centre because of a bad feeling I had about one of the staff members (plus my support was cut from 72 to 24 nights). That, combined with a drawn-out court hearing in 2014/15 to get Child Support and ask that her father take some physical responsibility for Freyr (the latter of which was rejected and I was instead given Sole Parental Responsibility) all snowballed, and, when I did approach Child Safety about care relinquishment, they said I would have to stand before a judge and explain why I can not care for my daughter, and that if I place her into care, she would get moved around the state of Queensland every 2 weeks and that I may not be able to see her.
Honestly I thought I’d “forgotten” about it and “moved on” to “better” things in my life, but when it came to returning to Australia last year in August prior to Freyr turning 18 in December to plan for her needs into adulthood, I was “hit” with the sense of trauma and deprivation I’d experienced living in Australia and not being able to get support for Freyr… I felt again the horrid sense of anxiety and distress sweep over me; I still feel sad when I think about the whole experience of trying to live and support Freyr in my own country! But what was I to do without an income-source to pay the costs of care, activities and “living” for my daughter? Sure, I have developed a great project here in Bali, which when it was running at full capacity, brought many friends from around the world to hang out with Freyr and I and with whom we had fun building and exploring our local culture and landscape with… and, which afforded me to have Carer support for Freyr and enabled me to continue my learning and to develop some small workshops to employ craftsmen and help them to attain a higher-than local award-rate salary while continuing to share with others… But without a way to EARN money, our life here in Bali is unsustainable. And I never really considered starting a company in Indonesia as I just want to support my daughter’s needs and continue recreation activities and learning for her and myself also… And/but then, now I realise that it is or may be possible to sustain a living and livelihood through the guise of a company structure to support what I would like to offer others who wish to join our adventure and contribute to making this project awesomely reviving and viable in the long term to provide a safe secure family environment for people with special needs.
I used to experience anxiety frequently after my nervous system became extremely worn down not having a break from Freyr (who is like a perpetual toddler) you could say and I really nearly lost my shit totally. I did too much Vipassana in my early 20's so when I was explaining to Disability Services in Australia what was happening to my nervous system and mind in such an "objective" way - they didn't take me seriously. Better if I had gone in there screaming and crying and having a fit-of-breakdown on the floor. I knew I was close to it and had all the warning signals in my body - but yeah, they didn't take me seriously. And I didn't want to reach that point and Have a total breakdown... because what good would I be to my daughter if I was in a nut-house/medicated drongo (as my friend put it well to me).
My next step was to put Freyr into foster care. When I looked into that option and asked Child Safety about the process, they said that there were no care-houses for under-18 people (with disabilities) in Cairns and that she would probably get moved around every 2 weeks and I might not get to see her. They also said I would have to stand before a judge and say why I am unable to look after my daughter... and there was another thing but I must have blocked it out of my memory for now. Horrified, that became the very very last-resort option. My psychologist said she'd looked into as many options as she could and couldn't find any support for me either. She recommended that if I felt like I was going to lose it, to get a taxi to the hospital as they would HAVE to take Freyr into care. So I kept a bag for her packed in case it got to that stage.
It was at the 11th hour that my Philippine friend asked me to come and stay with his family in Palawan.
....My vision is to crowd fund between families of kids with special needs to create a time-share model for meeting the needs of ourselves and our children now and into the future. I aim to create a type of Super-Natural-Annuation which parents and people with disabilities themselves may co-invest in to propagate disability-friendly, accessible, inclusive, fun and natural spaces for people to coexist and work together - becoming self-sustaining through community-enterprise activities and sharing new possibilities With other families for harmonious supported living.