Truthfully, it was my own ‘Carer Fatigue’ that has led and driven me to initiate this project – and also my longing to create somewhere i can Be WITH my daughter AND feel supported.
Unfortunately the system present where i come from (probably better than what’s available in developing countries which is sweet nothing) basically is crisis-driven and relief can’t be given to carers until they actually Break Down – which comes at a much greater cost to familial relationships and personal esteem and dignity than early warning intervention measures would.
But that’s how it is, and I’ve been extremely close to total breakdown myself – where my nervous system was reacting with uncontrollable itching sensations in my shoulders; where i would feel so totally overwhelmed my legs would start shaking and giving way from underneath me and i became a screaming crying mess – begging for help … begging for help with my daughter who i felt had just gotten too strong for me and who i could no longer “control” anymore… I couldn’t see a way forward and i couldn’t fathom how i was going to keep going caring for her. Close friends advised me to consider relinquishing care of her… that my situation was not sustainable and that I should consider what would be the best long term outcomes for her and myself, and that I shouldn’t put my mental health in jeopardy.
I took time out to go and have a retreat for myself in the Philippines and organised 6 weeks of respite to consider my options. Little did I know that it actually only takes a few weeks of total rest and restoration – some healing herbs, cleansing diet and some love and attention to myself … in order for my body to start to regain it’s equilibrium. For the mind to go through a literal unwinding process and of not being constantly called to attention and enabling one’s nervous system to let go and regenerate the cells of the body… To be able to have a “normal” conversation again… to rediscover my Own identity outside my Caring role for my daughter. I was a bit of an extreme case perhaps (being a single mother with no family support).
Quite refreshing indeed. But facing going back into my full time caring role was unbearable… Overwhelming to say the least. Then, as if by miracle, a Philippino friend offered me to come and live with him and his family in the Philippines and that they would help me care for my daughter… I jumped on this opportunity. We moved to the Philippines in February 2016.
It took me a further month or two of slowly reintroducing my daughter back into my environment – or I hers really – slowly easing myself back IN and being able to take breaks When I needed to and just have my morning solitude. . . to be able to start spending time again with her without feeling myself start to panic and go into overwhelm…
Since living in Asia this past two and a half years, what i have learned to love and appreciate is the sense of family and mutual/collective caring that we seem to have lost in the “western” world, even though there is not much in the way of services for “disabled” children. Also that with a few other people around, I can actually Manage caring for my daughter… with the stress burden reduced, and being Able to go off and do things i need/want to do… (without having to Justify that it’s “Reasonable and Necessary” to anyone!!)
It’s what has motivated me to Keep Going, along with the Vision I see of where I want to live and help care for my daughter and where I can live and thrive and her needs can be met – in terms of “care” but more in terms of having the social and emotional environment where people are CONNECTED and doing they things they love and where she can Naturally participate and be part of programs designed to mimic daily life activities, built around COMMUNITY and sharing; working together… where she CAN be part of a family/community business and learn to cooperate with others and have the social advantage and JOY which I’ve clearly seen when she is around others and not alone/isolated with only her iPad or the TV for stimulation.
I might be going off topic here but from living here in Asia I’ve noticed her thrive and develop just by Being around other people and learning her place in a family environment. When she’s home with care workers (or just myself), it’s like her daily challenge for herself to be obstinate. To refuse what “needs to be done” to get to school or whatever. But when she’s in a group/family – she just changes. There’s this other side of her that “wants to belong” that comes out and I can see the joy in her face and a kind of desperation or urgent need even to SHOW she is like the other kids… (I’m thinking directly about our experience at the Jimbaran School we visited and how she got down on the floor after all the other kids had had their turn and did the brain gym exercise short routine). I’m still amazed at that and all the times I’ve had to hound and hound her to do her brain gym and then… Whoop! Look what i can do! (when it’s not Me watching). Maybe she’s just giving me back my rebel karma. But anyway,
I have to stop and ask myself at times: What am i actually fighting for? It’s a constant battle in Australia to receive and keep support for her. My time is constantly being evaporated trying to coordinate her care… What’s the freaking point? I just had an unpaid volunteer help me and contribute more value to my life and save me an extraordinary amount of time that i would have otherwise LOST dealing with care agencies. Ok maybe it’s a fact of life i have to deal with but i sure-as-hell can’t be dealing with it day in day out ALL of my life!
I need somewhere I can go and just Be with her… Or be able to find what it is i want to Be outside of caring for my daughter constantly. Start to build a life of my own somewhat… develop and create MY Own ideas and creativity… nurture and launch an income for My self so i don’t have to be dependent of welfare and/or child support. It’s fine for now but what about when she becomes an adult … another freaking court process. Anyway, off topic. Please God, help me create somewhere people can come and just support each other Naturally. Where of course there are safeguards in place and it’s never left up to just one person to be solely responsible for the welfare of special children … where the burden can be easily and fairly shared – and even enjoyed 🙂 … I mean I LOVE my daughter… I Love being with her… But it’s challenging keeping up with her constant curiosity and need for stimulation. And i need time to figure out where I’m going and remember My Self, my health – that I can have Friends and quality time for her and for me.
I would like to enable something periodic but then grow to become something more permanent and i don’t know whether that will be in Asia, Australia, or if we will just keep travelling and sharing this idea all over the world…. Maybe it will never be “over” – our job will never be “done” but If God put us here to inspire it – then That’s What We’re Gonna Do!
For now however I’m looking at organising a retreat for this coming September for parents/families wishing to get more involved, and another family gathering in October leading into December. There’s opportunity for families to come and be resident here and participate in our bamboo workshop and also for other artists/volunteers who’d like to develop their own product and/or stay and help with building our first Bamboo Cottage/Villa which will be our prototype in coming to co-create our village.
If it’s your time to shine and Revive, get in contact below… and we can discuss more how you might like to Join Us…