BY THE TIME WE BECOME #24/7 AUTISTIC CARER'S BOTH OUR CHILDREN AND OURSELVES ARE IN DESPERATE NEED OF FINANCE AND INDIVIDUALISED DIVERSE SUPPORT IN ORDER TO BEGIN RECOVERY AND LIVING AGAIN
Trigger Warning: Suicide. Trauma. Family Violence.
This letter describes the life and living of trauma in both a child and Carer. It's by no coincidence that our experiences are very similar to one another except I had my child's other parent provide for us when we were separated preventing us from facing homelessness, whereas Ava and their child didn't. Both are lucky to be still alive and a true testament to her unrelentless spirit however, we're deeply concerned how many other children and their Carers [parents] have been, are, or will go through this hardship due to and without support from humans who can work with our diverse needs as WE KNOW THEM?
To Whom it may concern,
I am writing to you in hope of supporting my application for Carers Payment and to provide an accurate overview of our current circumstances. I cannot currently meet my child’s disability needs, our increasing daily challenges or trauma related needs, whilst trying to adequately support ourselves on the Newstart Allowance.
We are suffering and facing a very real threat of homelessness in the near future. To add to this we are also faced with managing a very dangerous and prolonged Family Violence situation. We have experienced suicidal thoughts and are in tremendous need of support and help just to get through each day.
I have engaged a friend of mine to assist me to complete some of the lengthy and difficult administrative requirements for our and during our extremely complicated situation. Trying to meet my child’s diverse and complex needs at this time without cooperation from medical professionals and no money is not only impossible, but very time consuming.
I am my child’s 24/7 Carer for their Physical, Emotional and Psychological needs in every regard. This includes a high level of care not only for their disabilities, but also to assist with the daily challenges they face due to their current state of trauma. For this reason I am unable to physically attend appointments or activities of any kind, outside my child’s safe-house.
This includes our struggle to take care of our most basic daily needs such as grocery shopping or being able to leave home in emergencies, as I cannot leave my child’s side at the moment without re-traumatising them. They have become entirely housebound and has disengaged in mainstream education.
A disability service are currently searching for disability assistance/support for us both in this unique and desperate situation and struggling to find someone to help us in the way we need.
I became my child's full time Carer for the past 8 months, without ANY family support in place whatsoever. We are currently living in a safe house, due to our Family’s Violence which has recently escalated again. Our families stalking continues to add to our very fragile state at the moment and my child has declined significantly because of this.
My child's current state of emotional and psychological distress, makes it impossible for me to look for work and attend any required appointments necessary to obtain employment. They require personal and ongoing care for significant periods of time, which far exceed the equivalent of an 8 hour working day. This workload of continuous care is around the clock, 24/7 both day and night, every day of the week.
Some of the major Functional and Behavioural Indicators around my child’s current condition include;
Disengaged both from mainstream and alternative education due to expectations placed upon my child which far exceeded their capabilities, causing them to shut down in class and at home. These environments were damaging to their mental, emotional and physical health.
Crying and emotional outbursts several times a day. My child is in a constant state of anxiety and agitation which escalates quickly into foetal position. This includes difficulty breathing and falling into a state of shock (temperature rises and falls, experiences nausea etc) and obsessively mentally–verbally berates themselves.
Does not verbalise their needs, as most of the time they are unable to recognise them for themselves. This means as their Carer, I am constantly having to monitor them and read their non–verbal cues in order to know what their needs are in any given moment, (they are not able to be alone for long) and accurately identify these before the onset of a meltdown
Has no desire or capacity to have more than one friend at the moment. This is limited to maximum of a few hours at at time, with long periods of solitude for days/weeks in between, in order to re-engage again. Even time spent with their ‘best friend’ requires regular breaks (downtime) and at times they may not even engage when together.
Cannot leave the house due to their paralysing fear and overwhelming anxiety. My child's deeply distressed state (meltdowns) happen frequently, for extended periods throughout the day and night. This results in severe exhaustion for both of us, as I tirelessly work to assist them through this extremely painful and desperate merry-go-round. [Responsive Caregiving]
The daily struggle we face trying to survive on a low income such as Newstart Allowance, has made it impossible to meet even our most basic needs (which are much higher in comparison to families who don’t have children with disabilities) eg. medical costs, special/disability needs, educational and living costs.
This means that my Child with disabilities and Myself, their 24 hour Carer, are now facing homelessness again in the very near future.
We are yet to receive a response from my child’s Psychologist after requesting the Medical Form be completed again, requested by DHS, to include the information they require. I am now faced with having to find another Professional to sight and assess my child ($300 consultation fee, plus an additional $1000 if we are required to have another assessment done).
We do not have any more furniture or other personal items to sell in order to fund this which we have previously done just to get by. It is money that we simply do not have! My only option to fulfil the request for additional information was to utilise Emergency Services; ‘Doctor on Call’, Child's Hospital, After hours Emergency and the Home Visiting Doctor to come to our home - to which they still did not attend.
WE CANNOT GET A MEDICAL PROFESSIONAL TO OUR HOME TO SIGHT MY CHILD.
* Services are accessible but won't/can't help in the way we require.
I have contacted emergency services consecutively over the past 3 days/nights, but was unsuccessful in my efforts to get anyone to attend my home to sight my child. I still have not been able to get the Medical Form completed correctly or have someone write me a letter of support.
The following is a detailed account of just one night spent on the phone with Medical Services-
They put me through to a lovely and calm Paramedic. He asked me all about our situation, my child’s Autism and OCD, and the frequency and severity of Meltdowns etc. I also told him about the Domestic Violence we experienced recently which has contributed to my child’s trauma and panic attacks.
He advised me there is nothing that can be done right now and I have to take my child to hospital, despite the fact I am unable to get them out of the house.
He acknowledged from what we had discussed that we are clearly in desperate need of support at the moment however, he believed that this is largely due to Social factors and it was not a Medical issue. (My child is complaining of a sore ear every night which still has not been seen to, in addition to them experiencing trouble breathing in the midst of a full blown panic attack)
I was advised that if I wanted to be seen my only option was to put my child in an Ambulance and take them to Royal Children’s Hospital, and wait with my child at Emergency Department to be seen by specialists around 8am when they start work. (It was 3am by this time, that would have been a 5hr wait with my child)
The Doctor insisted my child needed treatment for their Autism. He advised me there are specialists at the Children's Hospital who are there to stimulate and distract the child which would allow me to get things sorted out with the relevant team (Paediatrician, Speech & Behavioural Therapist etc). In addition to this, he told me my child will be given Ritalin as he believes that they need to be on medication.
I wasn’t consulted on my position or feelings around this. I was instead instructed this is what had to happen as if there is no choice involved as a parent at all. I refuse to give my child a speed based medication for their Trauma or OCD or painful ear.
Of the 5 individuals I spoke to that morning, we were lucky to get a really understanding person in the middle (Paramedic), but were quickly hand–balled off again into the merry-go-round of different services and professionals who disregard my concerns.
Instead of someone examining my child to make sure they was ok, they insisted I need to be engaging with multiple specialists (outside the home!) to begin ‘treating’ their Autism by giving them medication masking the effects of their trauma.
What an absolute nightmare!
We were totally exhausted by this stage. After spending 2 hours on phone, countless conversations and still no help we went to bed around 3.30am. Sadly this was not a unique situation or a once off, but one just of many occasions that reflects a typical night of extreme distress and suffering in our household.
COSTS OF LIVING
Due to my child not being able to leave the house, we try to order our food online where we can. This needs to be organised and done in advance with minimum amount for a grocery order being $50 (we are unable to quickly duck out when just one or two items need replacing). To add delivery on top of that is around $20+ extra.
We usually have to wait at least 2 days before receiving our groceries.. Sometimes for example, we run out of toilet paper and have to ‘hold on’ until our delivery arrives. The supermarket will automatically replace specific items with a similar product if something we ordered isn’t available. Due to my child having a disability and being so particular about what they eat, it has to be exactly what I have ordered and not just ‘any’ food because he will not, cannot eat it.
This leads to precious food and money being wasted, as I cannot force them to eat a substitute food that the supermarket has chosen. My child will then meltdown without having enough food to eat, so I AGAIN have to order more food (minimum $50 with an extra cost of $20 delivery) and wait 2 more days for the Supermarket to deliver the items I initially ordered, because of foods that were substituted/replaced on my behalf.
We do not have a car at the moment, as we were forced to sell it to keep up with our daily expenses and medical costs. In emergency situations I have to either pay for a hired vehicle. This is expensive and not financially viable.
We've received no child support since my child was born and missed out domestic violence top up from Government because I have to call within 7 days of the incident.
We have no money for specialists/interventions; Paediatrician, Psychologist, Occupational Therapist, Speech Therapist, therapies or disability aids for my child.
We have no finance for my child educational costs (average $4,000 per year); books, materials, resources, travel, programs, activities.
I'm aware that the current financial cost for a medium family having an autistic child is $34,900 per annum.
We have been advised that our electricity will be disconnected this week and estimate being able to remain in our home for the next few weeks at very best, before becoming homeless again.
We look forward to your response and hopefully an urgent re-evaluation of our circumstances, in order to have our Claim successfully paid and backdated to the date of first contact.
THE ANXIOUS MOTHER – INTUNE PATHWAYS
TRAUMATISED CHILDREN REQUIRE LOVING PRESENCE
NO COINCIDENCE, TWO FACILITATORS RESCUE THEIR TRAUMATISED CHILDREN AND MOST DON'T GET IT