So NDIS broke me. But it was just the proverbial straw. That straw fell off a camel that had too many humps and thus could carry a lot of straw. Let me explain to you what the accumulation of trauma does to somebody. But first let me list that trauma for you. Why? You really need to understand what collateral damage does to a person and you may wonder what it’s doing to you.
Born autistic 1969
Sexually abused approximately 1973
Separation anxiety which included bed wetting, people pleasing, utter confusion around societal norms until I was 13 for the bed wetting but the rest has been my whole life.
Marrying a man I loved too young who I should have just had a relationship with.
Advocating for my autistic child from the age of two. He’s 18 now and I’m still advocating.
Selling our house because there was no funding, no HCWA, and we could not sustain even the gentle therapy we chose. We’re not fans of ABA.
Living a fairly isolated life due to lack of inclusion and acceptance within the school community.
Supporting my child through dreadful bullying and trying to have it stopped. Then trying to have the school take accountability. Then deciding I had to tear down walls and rebuild them.
Always knowing I am also different without the clarity of understanding why.
Having a massive mental health breakdown in 2011 which has seen me hospitalized dozens of times over the last nine years. During this time I was openly gossiped about in quite nasty ways by people who were connected with me. I saw it and I was suicidal. (I quickly saw through their nasty selves thankfully) I was over medicated and I had unnecessary and invasive traumatic electro convulsive therapy. This meant a future with a permanent short term memory impairment which I hate and get so embarrassed about.
My husband getting diagnosed with cancer and having an operation to remove it.
Continuing to advocate about bullying in schools while being treated badly by some who should no better and ignored by others with the power to commence change.
Throughout my life things happened I could never understand. I would have to have blow by blow debriefing with my Mum or husband yet still never understand.
Started a business with my then 15 year old autistic son which gained international press and while I could use that to advocate about better employment options for autistic people, I realised the limelight was not for me. Managing his business for two years put me in long term burnout.
Receiving an autism and ADHD diagnosis at 50 was great but it’s like breaking a bone to reset it. I had to learn and am still learning how to drop my mask and be the authentic me I want to be.
NDIS last year was stressful but successful for my son. The second plan has been a nightmare. I can’t really say that NDIS broke me but it was like that dam with too many holes. It collapsed and I faced a tsunami. I’m in a state of collapse.
I spent all of 2020 preparing to give a private submission with The Disability Royal Commission.
Let’s not forget the uncertainty of CoVid. Do you know how difficult uncertainty is for some autistic people.
We moved house and I’m still overwhelmed with things to unpack. We had a lot work done on the house which was an invasion of my senses and I loathe dealing with strangers. They are polite and nice but it’s taken me out of the discomfort zone (because I’m not yet in a comfort zone) even further.
The building inspection report missed a heap of stuff. Can’t even begin to talk about that.
I’m not having the chance to be creative and I am wilting from this.
I can barely string words together at the moment. Pretty sure the time has passed to lodge the appeal with Administrative Appeals Tribunal. I can’t stomach it but I also have nothing left to give.
I constantly feel guilty about my inability to do much and feel like I’m letting everyone down. Anyway my point is that before most people get to the point of beginning the NDIS pathway they are exhausted. They might be fragile and lacking resilience and resilience is the very thing you need in spades.
The accumulation of trauma means I live with PTSD. This means I am some times triggered. It means my threshold for dealing with things is very high. I sit in a state of high anxiety. What I am no is too sensitive. There’s no such thing. What I do not want is pity. I am not whining. I am informing. I continue to bang on about mental illness so that we can banish that stigma forever. Do you know my kids can talk to me about anything. I have always been open and honest with them. Yes I measured my words when they were younger but I was always honest.
My kids may not tell me everything. They’re entitled to a level of privacy but they come to me when they need help. They know they’re safe to. My kids think nothing of visiting me in Belmont Hospital. It’s all very typical. Let’s spread the word. It’s all very typical.