It’s pretty “normal” to be living in “stress response” when one has a child with a disability. It’s “normal” to be in a state of “just coping” and permanent “Fight or Flight”… People say that I’m “so patient”… and I think to myself: “No I’m fuckig not”. In fact, I think if I smell one more faecal smell waft across the room, I’m going to totally lose my shit… If i have to turn around one more time to inspect the inevitable destruction, I am going to scream my fucking head off. I get angry, frustrated and resentful that I can not just close my eyes and spend some time with God within myself… that I can’t do a yoga session in peace… that I can’t just have some quiet time to write and meditate on my vision for how I’d LIKE my life to look like (let alone spend time with a friend or companion)… I blame it (the fact that I “seem” patient on the outside) on the fact that I overdosed on Vipassana meditation in my early twenties. Everything was so “Anicha” … to the point that when I accidentally slammed my hand in a car door, I just looked at it for a few moments and then thought “I should probably open the door”.
It’s brought me to the point (In 2015) that I could calmly relay the thoughts and feelings I have during a breakdown to the intake officers (Disability Services) and because I’m not crying and a screaming writhing mess on the floor (though I have experienced being in such a state also) they don’t take me seriously… with one intake officer telling me: “Women used to have 10 children to cope with – just deal with it.”
I can’t begin to describe the utter dismay I have felt at not being able to be “heard” and even worse, that my daughter’s needs were ignored and I began to feel more and more guilty at not being able to support her or give her the time and attention she deserves due to my own overwhelm… That she missed opportunities to learn things to help her in her life, or that I didn’t have the care and patience to be able to sit and interact with her and have something of “worth “ to share with her. Apart from that it’s normal for teenagers to not be interested in their parents anymore – and literally, there is nothing she wants from me except my phone or iPad from time to time or food/drink.
Since she was a young baby, my daughter’s father refused to accept her saying “There’s something wrong with this kid – take her to the doctor” which I did repeatedly and the doctor would just say that she’s fine (apart from ongoing conjunctivitis and ear and chest infections) – but when she wasn’t sitting up, making eye contact, reaching the “normal” developmental milestones… my “spare time” became a constant search for finding a diagnosis and “solutions” to her health problems and delays in development. Trying to find out What was the cause – and even what were the actual problems… i.e. I couldn’t tell if she could hear properly or not – hearing tests were inconclusive; Whether she had nutrient deficiencies as I couldn’t afford the tests; and barely had any support in terms of therapy – being a single mum and not being able to access therapy financially and being on wait lists; with her missing out on the Autism funding packages when they came out because she was “just” too old (7 when they brought out the 0-6yrs funding and then she turned 8 when they raised the cut off age to 7).
Accompanied with the sense of isolation and not having a “diagnosis”, not knowing what the future held, always being “worried” about her missing out AND not knowing what I could do to help my daughter, was my own mental fog and lack of clarity around what I needed for my Self to remain healthy and in a stable state to care for Freyr’s needs… to be able to wake up and take some time for myself or go for a walk was a near impossibility … When sage advice was offered like “Go into the silence within yourself and find your inner stillness” – I would scoff. As usually, whenever I tried to do so, my daughter would do something destructive and/or endanger herself. So, even thinking about these things conjures feelings of hopelessness and helplessness that, if I don’t immediately erase, will draw me into the dross and magnitude of ‘nothingness’ and eternal despair. I learned to use coffee, cigarettes and alcohol to numb out and pretend that I “didn’t care”.
Still, when I don’t know how to cope, I reach for a cigarette and the lighter to snuff out and skirt around the internal collapse I’m feeling. I think it’s just the sense of aloneness and internal sense that no one cares or understands that pulls me down further… I’ve built up a solid barrier to anyone being able to reach inside me even, because to feel those feelings, in a sense, I would surely drown and suffocate. And I don’t want to burden anyone else with them. Blaming myself, my own inadequacy, my fear, my guilt… Probably not trying as hard as I could to feel gratefulness for Something during those critical moments. But gratefulness is surely the only way I have been able to shift my focus and turn my life around in general. Especially gratefulness to have (create) time to myself to sink into myself and reconnect with my inner source.
Like Neville Goddard says in “The Feeling is the Secret”, we must be able to feel oneself “Experiencing” the reality we want to bring about for ourself. It’s just “so easy” to ‘slip out’ and for that fear and worrying cycle to start spinning around and taking us out of “centre”; things start feeling heavy, daunting, overwhelming… Since 2014, when my whole life began imploding – those sewn-up edges began to burst… it was cumbersome, it was messy… I was in a “state” of perpetual anxiety and distress. Even though I’d been through many cycles of darkness and emergence: I learned to know that time period when there seems to be “no way forward”, and to just keep trusting and believing…. and to do so even more strongly then than when I can see the path before me… because through that darkness, God can reach us, and the path unravel from “the other side” in ways we could never have expected. (I always see retrospectively the darkest times have brought the biggest miracles). Like when I was at my TOTAL wits end, was about to relinquish care of Freyr, and out of nowhere my friend in Philippines asked that we come and stay with their family and offered to help care for Freyr.
I’ve learned a lot about gratitude living in SE Asia, and sometimes, I think it’s easier to be happy when you don’t have a “hope” of receiving something (like support/therapy for your child)… For people here, its a lovely surprise if support comes along – but they mostly live without any kind of help with children who have a disability. … (The advantage they do have is big families so they are not “alone” in caring for someone with s disability). So, There’s never any reason for them to feel let down, disappointed or deprived because there was never any expectation of support to begin with. This has helped me in a way to “recover” from my let downs with NDIS and not go too totally nuts… Though I would have thought that, being from a supposedly “civilized” country, my daughter’s needs would be recognized and met immediately, regardless of where she resides (or plans to reside in future), but Common Sense and/or Humanity seems to have proven not to exist in the Australian system or bureaucracy – so, once I can Accept that, I think my life will be a lot easier. It’s hard though to still be going through the constant rigmarole and repetitiousness of not knowing what to do to HELP my daughter, and to not be able to afford to access Therapy for her – even though there are quite a few services available here in Bali that she could benefit from.
I’ve just Spent 3 days alone with Freyr and am nearly going up the wall and am remembering what it was like when i had no support for her – being unable to cope with her sounds and constant demand for stimulation, food, her wanting to tip out every thing that is tip-out-able. I was in the middle of doing a meditation about an hour ago when the aroma of faeces wafted into my nostrils and I realized she had shat herself and was in the toilet trying to clean herself with toilet paper but shit from the nappy had spread down her leg and to an obviously unknown destination that I was unable to clean properly as I can still smell it… I actually can not provide a safe environment for her on my own… it’s impossible to care for her and do anything like cooking, laundry, even to turn my back for more than a minute. It’s fairly “safe” when she’s on the trampoline downstairs at our house (I’m a a friends’ apartment at the moment with no “escape” area so it’s fairly full-on in my face procurement) – I have locks on the fridges so she can’t pull all the food out and do her style of “creative cookery” which invariably results in all the ingredients being mixed into an expensive over-salted inedible slurry.
I did just have an “inner experience” though, of wondering, what it would be like to actually be able to GO THROUGH the experience of total overwhelm with Freyr… I mean, in the moments when i physically can not stand the sound of her repetitive grunting noises and the energy of (what for me seems like) chaos that makes me feel dizzy and almost nauseous – exhausted, and the feelings of overwhelm, resentment and anger that I experience being around her for too long. (At home during these moments I usually just secure the fridge and hopefully any precious items and get on my motorbike, lock the gate and just get out somewhere I can breathe and have a break from her… to the market or just driving around for 20 min… What if i could just sit in those feelings of craziness and overwhelm and tune into what I feel GRATEFUL for…
Finding something about her to be grateful for/to… I found myself feeling into what that would be like just before. … for a moment. I wonder if I could actually connect with her in those moments – or just sit somewhere and find my sense of gratitude… OMG that scares me in a way and brings up the fear anger/even more because it seems like she doesn’t even want to connect with me… maybe that is part of my frustration – her unwillingness to interact with me… She just pushes past me usually… on a constant “rampage” to what she wants “next”… Feeling that sense of rejection guilt/not being able to connect with her could make me collapse even more. But i think if I CAN let that go… Maybe I just have to follow Her and observe Her and not Try…
Ah, that one… I think is a big source of suffering for me: TRYING… Trying… to find a solution, to find work and a way to earn money… to get what she needs…. to plan out the future… to plan for her needs… to get funding for her… to find staff for her… to help her communicate and find methods… to plan her activities : The good ol’ TRY! Countless hours on the internet searching, the dead ends, the maze of maybes… my mind not being able to be present with Her. I feel like I’ve missed a lot of being able to Be with and Connect with her (Freyr). Let alone the time I’ve “wasted” being absorbed in telephone calls, emails and writing for hours and hours TRYING to get support for our “survival”… and not spending that time with her but being exhausted, never reaching the “end” and missing out on the quality time we could have had… like to going for a walk or to the beach for a few hours together… (I can cope with her for 3-4 hours usually when/if i don’t have to talk to anyone.)
On one level she is totally Awesome and somewhere else, “out there” and unaware of any danger, and at that level, I am always in knee-jerk reaction and need to maintain a state of hyper-vigilance to offset the next potential disaster; I can never have a conversation with anyone or focus on anything other than Her for a more than a few minutes (even then…. having any deviation of attention is a risk). Being there with her is a call to being incredibly PRESENT and attentive which is precisely what is so exhausting because no-one can be on-alert 24-7 – though most special needs parents are exactly that. (I can’t believe the rates that people are getting paid at to do for a few hours, what “we” do day in day out with practically zero acknowledgement! Currently two-thirds of the total NDIS funds are used just to ADMINISTER the funding… that’s before the remaining gets to the Disability Agency and enactment of the Planning level… let’s not get started on that one).
So what if all that “sucked up money” was used instead to establish places where, (among periods of rest) as a human, I could follow and flow With Freyr In a safe environment… ? Where we have others to help us and share with, and where we feel like we’re just HANGING OUT… Where we can feel supported/included… I mean, the SE Asian people have it down pat… nothing bothers them at all it seems… they just laugh and joke and carry-on no matter what usually – but the difference I see is that they are Together… and I think that That is what we are lacking… a sense of Community and Togetherness. I mean, it’s not “rocket science” looking after a person with special needs – but it takes a shared-concern approach and knowledge of each person’s condition to create an environment where we don’t feel like it’s Us vs. The World, and maybe where we can actually feel relaxed and have support in doing activities other than constantly caring for someone with Special Needs.
Even just going to the local market to buy vegetables here, I always feel like there are other “eyes” on Freyr in case she “does” anything while I’m buying groceries… People always ask me about her and take an interest in her… (It would just be great if i could communicate a bit more in-depth verbally and have friends I could relate with/to more). What if such an environment could be created in our own culture? What if I just focused on that and affirmed that as Reality and refused to Worry or Try with any of this other bullshit that seems to constantly cloud and coat the life I Could” be living with my daughter… Would I indeed be Crazy to do that?
Going back to the idea of being present as I am experiencing overwhelm with Freyr… I will refer here to the Rumi reading I was listening to when the inkling started to creep into my mind… http://youtu.be/ZEb6En_FXrY and just listening to this “meditation” as it helped me to lift myself out of the “dross” I was experiencing having been by myself with Freyr for a few days and constantly exposed to her rocking, echo lasting, destructive tendencies and…. well … I am realizing that even I must recreate in my mind my vision/idea of who she is and her behaviors because maybe it’s all just negatively spiraled and I have actually created a mental picture of her to be who she is “for me”… And … It’s MY creation that she “occurs” to me in that way.
Someone did say to me once: “Maybe it’s how you hear her sounds that cause stress to you” and – yeah, I get it: Maybe I have some “associations” around the repetitiveness and pitch to my “lack of freedom” and desire to escape … but the reality I am more likely to observe is that any average human being with decent hearing ability will go absolutely up the wall after a week listening to my daughter constantly. But, like Florence Scovel Shinn says in The Power of The Spoken Word https://youtu.be/HZqJX4KWSqc, when we manifest out of frustration or impatient desire – often the result will be negative. And, I can say, the quiet desperation I live in from time to time, trying to “deal with” the sounds of my daughter, the sense of isolation of not having friends around me, or support in the “bigger picture” of creating something for Freyr’s liveable future – makes me feel like the battle for my mind is Real – and then the short-term/erroneous pursuits of trying to get funding for Freyr and not knowing HOW we are going to survive otherwise… and being worried about how we will continue to survive (now that I’ve sold my bus, cashed in my super and am pretty much at Zerow) draws my thoughts into being concerned and worrying about WTF is going to happen. And I forget momentarily the blessed position I am in now to begin my business in Bali and having committed to doing that…
It would just be nice to know that I can put my full energy and effort into making my business and know that Freyr will be perfectly provided for – my worry is around Freyr’s immediate needs and thinking that she is in need of funding to secure things like, a visa, a carer, medical needs, therapy and renewing her passport… and my days are taken up chasing thing after thing… When I could just focus on the vision i have for her life and trust that it will come to pass perfectly. My worry is around Freyr’s immediate needs and thinking that she is in need of funding to secure things like, a visa, a carer, medical needs, therapy and renewing her passport – if she were to stay here.
And they are giving me a hard run on the Australian NDIS side in terms of being able to access funds for Freyr outside Australia and I still am not in the total phase of being able to believe that all her needs can be met here without Government support and I don’t know if that IS the best and ideal outcome for her to have – as if something happened to me – there is no “back-up” so to speak… And as i was just doing an Angel meditation, for the second time – post Pooh episode… I had a picture of raising money (before her passport expires) for her to get back to Australia and staying at Glenda’s place in Ravenshoe – I saw my tiny house there (even and replacing the batteries and inverter that were stolen) and that I could come and stay and be close by to her…
I’m scared to live in Australia again though with my daughter. I actually used to have thoughts about driving into an oncoming truck or driving off the road into a tree when i was living there. The intensity and discomfort of living each day without any support was so acute, I had no desire to continue living and thought that we (my daughter and I) would be better off dead. That feeling subsided when we went to live in Philippines and after we came to live in Bali (though after the NDIS failed us I do remember thinking about getting on a fishing boat out to the reef and not coming back). I just remember now that the feeling of not having it, creates not having it… but if you haven’t FELT support before with your child, how DOES one create it ?
A big turning point in my attitude happened through attending our local church C3 and hearing the story of Jesus on the Boat. When the storms were tossing the boat around and the disciples were all freaking out while Jesus slept with his head on a silk pillow… and then got up and asked why they had no faith that God would bring them to safety. (Like Brian Scott, I believe the Bible is an analogy to learn about life and how to deal with our minds). And something shifted in me when I realized that instead of reacting to the “storm” I should better focus on having Faith in God to bring our path through and straight with Him. To Trust and Believe on Him in the most high position. And to submit my will and my mind to Him the Creator. That helped me to shift out of ‘victim’ mentality in a big way. However, when one lives subject to a system where (when we returned to Australia last year and was trying to access financial support for Freyr’s disability) money dictates a lot of stuff, that can seem rather daunting. Since living here, I’ve learned to trust in miracles so let I bring my faith even deeper and to the next level.