NO CHOICE LEFT – FACILITATOR'S OF THE ROARHEART™ PROGRAM RESCUE THEIR AUTISTIC CHILDREN FROM 'EDUCATION' AND FAMILY VIOLENCE TO ASSIST THEIR RECOVERY THROUGH HOUSEBOUND TRAUMA – AND MOST DON'T 'GET IT'.
Parliamentary Inquiry Into Services for People With the Autism Spectrum Disorder
‘Living with autism’ will mean something different for every person diagnosed with Autism Spectrum Disorder (ASD). For some ASD is experienced as a disability that presents significant challenges for everyday living, for others ASD is part of the neurodiversity of humanity, a condition to be celebrated rather than ‘treated’. The diversity of experiences of people with ASD is a challenge for public policy. It means that governments cannot support people with ASD through a one-size-fits-all model. Each individual is impacted by ASD differently, and in addition, many will have other co-occurring conditions that will complicate how their ASD is experienced. The challenge is to ensure that people with ASD have access to the supports they need – either through specialised disability services or through mainstream services that are fundamentally inclusive.
No mention of trauma and by the time we become 24/7 Autistic Carer's we are in need of IMMEDIATE financial assistance.
A ROARHEART™ program facilitator, in desperation writes a letter to Department of Human Services (DHS) advocating for themselves and their child to be accepted for the Carer's Payment to be able to appropriately care for their traumatised autistic child and prevent homelessness – again!
Ava's letter is written eight months after their first contact with DHS about their impossible and most difficult circumstances.
It took 11 months, after many, many re-applications and refilling out additional forms for my application to be accepted for Carer's Payment. My child's other parent, my ex-partner, chose to pay for ALL of our expenses, while having to live under the same roof (could you imagine?) protecting our child from more trauma until we received Government financial support, preventing my child and me from homelessness.
It is impossible to financially support our traumatised children with disabilities or ourselves when we CANNOT work or hardly function.
However, instead of an immediate increase of financial support, we have to work out the plethora of administrative requirements amidst a time where we're entirely smashed up. The exhausting and confusing process takes up time and energy we just DO NOT HAVE, no human would, with NO ONE GETTING WHAT WE ARE EXPERIENCING and MONTHS before getting the financial help we so desperately need – if we're lucky.
We are traumatised women with disabilities, caring for traumatised children with disabilities having to climb Mount Everest to meet our basic needs.
Our children's experiences and our journeys are painfully similar except I began this journey over 3 years ago (and still a #24/7AutisticCarer) and Ava is eight months in.
We hope Ava's letter gives insight to those experiencing what we have, that they and their children are not alone. Millions of others who have no idea, what our journeys are really like. And those 'millions of others' are in our families, friendships, education and professional circles who cannot, even after being told, grasp what it is our children are experiencing. Our needs and choices are to be respected as WE IDENTIFY THEM.
It's not what you want or think is best for us – it's what we know our needs to be!
Too often we are to accommodate family, friends, services and professionals rather than they provide for our individualised diverse disability and/or trauma needs.
We believe our experience is not uncommon – just silenced and overlooked and what really concerns us is this.
How many children and their parents, are, or will experience this? How many will survive these unnecessary and inhumane insane obstacles to receive appropriate support just to get by? How many actually don't? And where to do they go? What do they do?
My friend has myself and all of my resources to help them, and we're still struggling to get the financial and professional help her and her child are in great need of.
Mind you, I said to Ava yesterday, if I hadn't stepped from all of the well-meaning humans who didn't, wouldn't, won't or don't 'GET IT' (the trauma caused by our societies ONE SIZE FIT'S ALL approach to our neurodivergence), I wouldn't have had the time and room to help her.
It's incredible that we facilitated the ROARHEART™ program where we successfully assisted young women in reconnecting with themselves, others and their community; work, learning, recreation, volunteering and lives and here we are, with our children completely disconnected, desperate and at a loss.
We become the families that we were working with, and now we understand WHY the program was so successful without really knowing why back then.
We hope those who are not #24/7AutisticCarers begin to comprehend what our beautiful autistic children endure because of trauma and because of the lack of understanding, listening and respect of OUR NEEDS from MOST; professionals, services, families or friends.
Others may think they know best, but it is we the #24/7AutisticCarers and their children who actually know.
STRETCH _ EMBRACE _ SOAR
Whether I accept this or not, or have a diagnosis or not,
it is still true,
that my child and I know and understand
ourselves and our individualised diverse needs
in ways others may not or ever understand or want to accommodate.
ROAR_KEY CREATIVE QUEST
To love, trust, revel and lead with our beautiful autistic minds
through knowing and acting on our Roarheart
the inner inexplainable knowledge and truth
~ our intuition ~
Reflect and create a picture or journal the answer to;
Have I thought, felt, done or experienced things like this?
Share with another anything discovered in the Sacred Writing/Creating.
Do I know and can I list some of my child's and my own individualised diverse needs – what we need to be okay?
I pause with quiet reflection upon what does my child and myself need to be okay?
TODAY’S THANK YOU
I am willing to THANK all my regretful, angry, fearful and negative thoughts I may have.
I will trust, even if I don’t want to, all that I am aware of now, is how it is has meant to be – to be open to something new.
I am willing to put aside everything I think I know about myself/child, my life, my past and my future, to have an open mind and a new experience with knowing and meeting my child's and my own individualised diverse needs.
I am open to the possibility of moving from the AWARENESS of my child's and my own needs to ACCEPTING what we need to be okay, receiving new thoughts to love, trust, revel and lead with our Roarheart [our inexplainable inner knowledge and truth – our intuition] learning how to know, direct and master our individualised lives.
Housebound Traumatised Children Have Individualised Diverse Needs