The Week My Brain Cracked

Wednesday 22 July 2026 started like any other day.

6 a.m. The support worker walked into our small, eccentrically decorated unit in Toowoomba. It was mine and my daughter’s place. Even with everything we had going on, it was our safe space. There was no way to know what chaos was waiting for us over the next week. I would not have written this story if I’d known.

You know when an experience is the one that changes you. By the end of that first day I was still telling myself, “I’m okay. Surely I can get through this without an emergency psychology appointment.”

For those who don’t want to keep reading: I lasted six days. And that was after days of screaming at my LLM.

I come from a complex family. Three sisters and one brother. Same parents for all five of us. That may sound tidy on paper. It wasn’t. “Lots of abuse” is the polite way to describe my childhood.

Now that we are all in our forties and fifties, the pattern is clear. My oldest sister shows strong signs of undiagnosed BPD; at least one of her children has a formal Asperger’s diagnosis. I live with AuDHD, Level 2 DID, cPTSD, and I am raising a child on the spectrum. The middle sister has been consistently mean and toxic for decades; among her six children there are diagnoses of ASD, ADHD, ODD and bipolar. My brother had epilepsy. My youngest sister has bipolar and a child on the spectrum. To say mental health runs thick in this family is an understatement.

About eight years ago I made a decision: I would write my story by the time I turned sixty. I am still writing it. It is a story of healing, not of staying stuck. I have spent the last couple of years reflecting. My siblings, by and large, do not. My need to navel-gaze is a very autistic trait of mine, and I no longer apologise for it.

I chose to keep a relationship with my older sister mainly to stay connected to my nephew, and because, in the chaotic mix of family relationships, it appeared the easiest one to maintain. I am the second oldest. The middle sister has always been highly triggering. Even after I took her oldest son in for two years (at no cost to her) so he could finish school, there was no thanks—only more vitriol. My brother absorbed many of our father’s traits. In his twenties and thirties his behaviour toward me, and later toward my daughter, became dangerous enough that I had to set hard boundaries. My youngest sister, in hindsight, was simply trying to survive the same horrific abuse in the only ways she knew. The years between us created a chasm that felt too deep to bridge.

None of this means I was doing life better than anyone else. One of the quieter truths of Dissociative Identity Disorder is that you do not carry continuous memory the way most people do. You do not always have a coherent narrative of the people walking around you. My family often assume I cut them off because I am “high and mighty.” The reality is simpler and sadder: many of them are strangers to me. Their behaviour can feel so foreign that I cannot process it. Unless a dissociative memory returns (and re-traumatises me in the process), I may never fully process certain relationships or events. If you are ever close to someone with DID, know that you will often be the one holding the long-term memory of the friendship. We cannot always guarantee we will keep it.

Until this week I had systems in place. Frameworks for people. Structures that let my AuDHD brain function. My psychologist knew I was doing relatively well.

Then, at 1.01 p.m., a message arrived from my oldest sister:

“I got the chess board. But really love the bag you made for it! Might use it as a handbag!”

I had spent weeks making a dual-coloured purple and silver resin chessboard and a carefully designed, hand-sewn black and purple bag (worth well over $200) as a gift. The idea that it might become a handbag landed like disrespect. I rang her.

She is allowed to do whatever she likes with a gift. But if the plan is to be casually disrespectful, I would rather not be told. Or end the relationship first so the hurt is not delivered directly.

I do not process unkindness well.

The conversation quickly shifted, as it often does with her, into big emotions that somehow become my responsibility to manage. This time it was about my seventeen-year-old nephew—the oldest child of my youngest sister—who had recently moved in with her. For three weeks she had complained about him non-stop. Nothing he did was good enough. I offered practical help. It was refused on the grounds that “I have too much on my plate—I have a disability.” I simply asked her to pass on one message: I had a spare room and a safe roof in Toowoomba if he ever needed it. The message was never given. She then kicked him out. He was left homeless and estranged from both his mother and his aunt.

I had not spoken to my youngest sister in seven years. The situation felt urgent enough to find her. For years my older sister had gatekept contact details. She enjoys the role of family information hub. (She once took pleasure in telling me, years after my divorce, that my child’s father had contacted her and she had “told him where to go.”)

Through a series of Facebook unblocking steps I found the number and called. First words in seven years. My older sister immediately sent a venomous text about how dare I speak to our youngest sister. I ignored it. Ninety minutes of video with my niece followed—lovely. Then a short conversation about my sister’s own story. Three years earlier our other sisters had read a first draft of her manuscript, The Tormented Heart, and declared it “a pack of lies” that should be sued for defamation. I said I had never been allowed to see it. My little sister, very simply, asked for my email address so she could send it.

The day changed.

From the outside this looked like a momentous reconnection. In reality it was the beginning of a week that required two extra psychology sessions and two additional psychiatric medications “to protect my brain.”

Within ten minutes a long document arrived. My little sister and I got off the phone. My older sister stayed silent until the following Monday.

There is no easy way to talk about what those words of my youngest sister did to my system. I have still not finished the manuscript. I cannot. She begins with her conception in Mount Isa in 1981/82 and chronicles what she remembers. It is not polished writing—typos and grammatical errors run through it—but the content is unmistakable and harsh. It is hard for anyone with empathy. It is particularly hard if you have lived sexual abuse, rape or incest. It is truly discombobulating when you have DID and the family being described is your own.

One of the most painful threads is that our mother has never believed us. Her position has always been that our father could not possibly have sexually abused his children. In one of my sister’s accounts, she was made to apologise to him after he had raped her at eight years old. When I was fifteen and tried to speak, my mother simply said, “He would not have done that.” Conversation closed.

My sister writes that our father introduced her to multiple families up and down the east coast who were in incestuous relationships, and that she came to consider it normal. That “relationship” continued until she was twenty-three. He was never held to account. I have only read as far as her early twenties. Going further risks triggering dissociative material I am not currently protected from.

I spent the next four days reading fragments, spiralling, and typing rhetorical questions into whichever large language model would not simply reply with a polite “this is hard—please talk to a psychologist.”

Monday morning the support worker arrived at 6 a.m. I had not slept well, but I was still trying to believe that if I just stopped reading I would be fine.

12.43 p.m. Messenger call from my older sister. I answered, telling myself I was strong enough for whatever came next.

“Hey.”

“Your brother has been found dead this morning.

Can I borrow some money?”

“That conversation is going to have to wait. Ring the rest of the family first.”

No. Sorry. What. He was forty-six. That is not right.

“Where was he?”

“Up in the Gemfields.”

“Have you told Mum?”

“No, can you do that?”

I have alexithymia. I do not do emotions the way most people describe them. I could feel my head beginning to spiral and I knew the name of the spiral was shock and grief. I could not stop it. And now I had to ring my mother—estranged for five years after I tried to talk about the sexual abuse—and tell her that her only son was dead.

I found her on Messenger. The call rang out. I pressed record and left a voicemail. I broke down trying to say the words. What else would you expect? You are leaving a message for an estranged mother about a forty-six-year-old brother who was somewhat estranged from the entire family, because the sister with BPD cannot manage big emotions or not being the centre of attention. Messy does not begin to cover it.

By Tuesday afternoon I had her phone number and felt obliged to ring and check in. She is doing about as well as anyone would after losing their only son. I cannot be fully honest with her. I do not want to hurt her while she is grieving. But I have already grieved for decades for a mother-daughter relationship that will never exist. She cannot fix that. She cannot apologise for the times she failed to protect me or listen, because the memories I still hold of her are almost entirely negative, and there are only a handful of them. By the time I was well enough to try building safer memories, she had cut contact. There is nothing left to reach for that she can give.

What remains of this week, apart from the ongoing family dramas, is the memory of my brother—nearly diluted by how the images I shared were handled. My older sister took a good photo of him from my 2013 wedding and posted it on the Facebook condolences page without credit. Not the biggest deal in the world, until a heated phone conversation in which she accused me of not having had a relationship with my brother. (Worth noting: none of my sisters attended my 2013 wedding.) My middle sister then took the same image and AI-edited it into a sunset gemfield scene. Inauthentic, and still no credit.

Years ago I made the hard decision to protect my daughter and myself from my brother’s more dangerous behaviours. It did not mean I hated him. We never said that to each other. It was a conscious choice to respect boundaries so both of us could live. I wonder whether another decade might have allowed reconnection. I will never know. I hope he rests in peace.

The funeral happened nearly four weeks after his passing, and on the day of the funeral, the Toowoomba Police rang me to collect his personal belongings – phone, wallet and keys – from the local Station. Once back in my possession, a weird experience for sure, I opened my brothers wallet to find a well worn treasured photo that he had kept close to him for 20 years. Tears flowed – I feel confident that we would have connected – we were family after all.

I have taken some of my sister’s words that match my own very patchy memories, and I want these final lines to stay about my little brother—the one who towered over me before he left school, even though he was only ten when I moved out of home.

Johno grew up on thirty acres at Windy Creek. Childhood meant building cubbies, riding bikes, watering trees, counting fence posts on the long trips to Toowoomba, eating too many grapes at Christmas, and getting into just enough mischief to create the stories our family still laughs about. Like most siblings we argued, dared each other, annoyed each other, and looked out for each other in imperfect ways. Those ordinary moments are the ones I will keep, because before life became complicated, he was simply my brother.

The week that was.

The psychologist, the psychiatrist, the support workers, the friends and the family who sent condolences—thank you.

It was not a week I could have expected.

But I truly know where to turn when my brain starts to crack.

In Memory: John Ford Jnr. 25/7/26

The Support Dog That Chose the Wrong Person

When I was diagnosed with Multiple Sclerosis in 2015, I had no idea how much my life would change. By 2021, I had also been diagnosed with Autism. In 2022 came the ADHD diagnosis.

Those years weren’t just about collecting diagnoses. They were about slowly understanding why life had always felt so much harder than it seemed to be for everyone else.

That same year, we welcomed a tiny eight-week-old Schnoodle into our family. Her name was Destiny. She wasn’t supposed to be my dog. She was supposed to be my eight-year-old daughter J’s support animal. It seemed like a wonderful idea.

J is autistic and has ADHD. We hoped a dog would become a calming companion, someone she could bond with and grow alongside. Life had other plans. J loved Destiny. She just wasn’t interested in the endless training that comes with raising a puppy.

As often happens in families, the responsibility quietly shifted. I became the one feeding, training, walking and caring for her. And Destiny made her own decision. She chose me.

The irony wasn’t lost on me. I wasn’t even an animal person. In fact, before Cream the cat and Destiny, I probably would have described myself as someone who tolerated pets rather than loved them.

Cream arrived first, in 2021. Then Destiny joined us in 2022. Neither animal followed the plan we had imagined. Instead, they found their own people.

Cream became J’s comfort. She isn’t trained. She isn’t obedient. She is, however, unquestionably the queen of our household. She expects to be carried to breakfast because the floor is cold. She has opinions about absolutely everything. She tolerates the dog because she has decided the dog may exist. Most importantly, she quietly curls up beside J when J needs her.

Destiny chose me. She follows me everywhere. She barks ferociously at Uber drivers before greeting them with enthusiastic kisses. If J and I play-fight, Destiny launches herself between us because she is convinced I need rescuing. She celebrates peanut butter enrichment toys by repeatedly bumping my legs with her backside. She has sampled enough of my coffee that we joke she has a caffeine addiction. She has redecorated the backyard with my dirty laundry.

One memorable night she stole one of my dentures from beside my bed and thoughtfully relocated it to the backyard for me to discover the following morning. Thankfully, dentures are surprisingly durable.

Some people might read that list and think,

“That sounds exhausting.”

Oddly enough… It isn’t.

Because somewhere along the way, we stopped trying to change Destiny. Instead, we changed the environment.

The couch has protectant sprayed on it. Blankets are washable. Coffee never gets left unattended. Dirty washing goes straight into the laundry sink. My dentures now sleep safely under my pillow.

Destiny sleeps in a crate that we’ve built into an old television cabinet in the middle of our family room. Not because she’s shut away. Because she’s one of us.

Looking back, that old cupboard tells its own story. In my twenties, it was my television cabinet. In my thirties, it held my stereo. In my forties, it became J’s baby change table. Now, in my fifties, it holds the television again…

…and underneath it is Destiny’s bedroom.

I’ve realised that’s a pretty good metaphor for my life. Nothing has stayed exactly as it was originally intended.

Everything has adapted.

The biggest surprise wasn’t that Destiny failed as J’s support dog. The biggest surprise was how much she has quietly supported me.

Because I have a dog, I have to walk. Because I have to walk, J and I now complete Parkrun together every second week. Those walks improve my strength and endurance with Multiple Sclerosis.

They build routine. They get us out of the house. They’ve become part of my own capacity building. Destiny, of course, thinks Parkrun is the greatest invention in human history.

Today, while chatting about our funny family stories, I realised something that genuinely surprised me.

For years, if someone had asked whether buying Destiny was the right decision, I probably would have hesitated.

After all… She never became J’s support dog. The original plan didn’t work. But sitting here now, I realised something else.

I’m not resentful. Not even a little.

Instead, I see something I hadn’t recognised before. Autism has taught me that my instinct isn’t to force individuals to fit the environment. It’s to adapt the environment so individuals can succeed.

That’s exactly what we’ve done. With my daughter. With my Multiple Sclerosis. With Cream. With Destiny. Even with old furniture.

I used to think adaptation meant failure. Now I think adaptation is one of the greatest strengths autistic people can bring to a family.

Sometimes support doesn’t arrive in the package you ordered. Sometimes your daughter’s support dog becomes your walking companion. Sometimes the cat becomes your daughter’s emotional support. Sometimes an old TV cabinet becomes a dog’s bedroom.

And sometimes a little black Schnoodle who steals coffee, kidnaps dentures and patrols the neighbourhood with enormous courage quietly teaches you that success isn’t about sticking to the original plan.

It’s about building a life where everyone—including the humans—has somewhere they belong. ❤️

When Your Support Worker Becomes Your Friend 

(And Why That Can Quietly Break Disability Support)

One of the strangest things about disability support is that nobody really teaches NDIS Participants how emotionally complicated it becomes.

On paper, support work looks simple:

  • someone helps with tasks
  • they attend shifts
  • they provide care
  • everyone goes home

But in real life — especially in long-term support relationships — something much blurrier happens.

You start sharing life.

They hear about your trauma.
They meet your child.
They see your bad days.
They sit in your lounge room while you cry, dissociate, vomit from MS medications, forget words, panic over Centrelink, or unravel from sensory overload.

And because disabled people are still human beings, not service agreements, attachment naturally forms.

The problem is: support work is not friendship.

And when those lines blur too far, the entire support structure quietly starts shifting emotional weight back onto the disabled person.

I’ve been trying to explain this for a very long time to one of my best friends, because they repeatedly struggle with workers they become emotionally close to. I could always feel the issue, but I couldn’t properly articulate it.

Now I can.

The problem isn’t closeness.
The problem is role confusion.

The Emotional Drift That Happens Slowly

One of my support workers is in her early 20’s and studying.

She is kind. Warm. Gentle. Emotionally expressive. And honestly? In many ways, she genuinely cares.

But over time, I’ve started noticing a pattern that I initially dismissed as “young person stuff.”

Late arrivals.
Last-minute cancellations.
Delayed invoicing.
Missing shift notes.
Vague communication.
Emotional apologies instead of operational decisions.

At first, none of these things felt huge individually.

But disability support isn’t experienced individually.

It’s cumulative.

For example: At 8:45pm one night — a full hour after she knows I go to bed — I received this message:

“I am still fairly unwell, and coughing a lot.”

That was it.

No decision.
No clear cancellation.
No plan.

Just a soft emotional statement hanging in the air.

And suddenly I realised something important:

She had unconsciously transferred the emotional labour back to me.

Because the message wasn’t actually:

“I’m unable to work tomorrow.”

The message was:

“Please help me decide.”

And that distinction matters enormously in disability support.

Because I am not the manager of someone else’s emotional discomfort.

I am the disabled person requiring support.

Why This Hits Differently In Disability Households

I think non-disabled people often underestimate what support instability actually costs us.

For many people, a late worker is annoying.

For someone with:

  • MS
  • AuDHD
  • executive functioning difficulties
  • fatigue
  • trauma
  • sensory regulation needs

…it becomes nervous system disruption.

Everything in a complex disability household is interconnected:

  • medications
  • meal timing
  • energy budgeting
  • emotional regulation
  • transport
  • routines
  • body doubling
  • childcare
  • sleep
  • finances
  • sensory pacing

One cancelled shift can ripple across three days.

Especially when you are already operating at less than 50% capacity.

What frustrates me isn’t actually lateness itself.

It’s being forced into constant uncertainty management.

Because every vague message creates invisible work:

  • contingency planning
  • emotional buffering
  • nervous system recalibration
  • schedule restructuring
  • budget reshuffling
  • waiting mode

And AuDHD brains are particularly vulnerable to “waiting mode.”

You cannot settle.
You cannot fully plan.
You cannot fully rest.

Your entire nervous system sits there hovering.

The Independent Support Worker Dilemma

One thing I didn’t fully understand until becoming an NDIS Participant is how much independent support workers quietly become part of a household’s survival infrastructure.

Many disabled people actively avoid agency staff rotations because the constant unpredictability is exhausting.

New workers mean:

  • re-explaining needs
  • re-masking
  • disrupted routines
  • sensory discomfort
  • inconsistent care standards
  • emotional vigilance
  • loss of safety

So instead, many of us intentionally build small, consistent support teams.

Especially autistic, traumatised, or chronically ill Participants.

But this creates a difficult paradox.

The more integrated a worker becomes into the household, the more operationally important they become.

A support worker may psychologically experience themselves as:

“one person calling in sick.”

But the Participant experiences the absence as a destabilisation event.

Because in disability households, support workers are often connected to:

  • meals
  • medications
  • mobility
  • showering
  • transport
  • emotional regulation
  • executive functioning
  • nervous system pacing
  • childcare
  • household continuity

And unlike many workplaces, there often is no backup system.

Especially with independent support workers.

That means Participants frequently absorb the entire downstream impact of worker illness.

Not because workers are bad people.
Not because sick people should work.

But because disability support is not a casual social arrangement.

It is infrastructure.

And infrastructure failure carries consequences.

The “Nice Worker” Trap

Here’s the part nobody talks about:

Many younger support workers are trained to be caring, but not necessarily trained to be professionally regulated.

So instead of direct communication, you get:

  • excessive apologising
  • over-explaining
  • emotional guilt
  • soft wording
  • avoidance of disappointing people

Lots of:

“I feel horrible.”
“I’m really sorry.”
“I don’t want to let you down.”

But not enough:

“I’m unable to attend tomorrow.”
“I will arrive at 4:15.”
“Invoices will be submitted Friday.”
“Shift notes will be uploaded tonight.”

The result is that the Participant slowly becomes the emotional container for the worker.

And disabled women are especially vulnerable to this dynamic because many of us have spent our entire lives over-functioning emotionally for everyone around us.

We soothe.
We reassure.
We accommodate.
We absorb discomfort.

Even while we ourselves are drowning.

Friendship Changes The Power Balance

This is the part my friend and I keep discussing.

When Participants become “friends” with workers, accountability often quietly weakens.

Not intentionally.
Not maliciously.

But psychologically, the worker stops experiencing the relationship as:

professional responsibility

…and starts experiencing it as:

relational flexibility

Which means:

  • lateness feels less serious
  • boundaries soften
  • emotional unloading increases
  • systems slip
  • professionalism becomes optional
  • the Participant becomes “understanding”

And ironically, the kinder the Participant is, the worse this can become.

Because emotionally safe people accidentally teach others:

“You don’t have to hold structure around me.”

But disability support requires structure.

Not because disabled people are demanding.

Because unpredictability has a disproportionately high cost for us.

The Invoicing Incident That Explained Everything

Recently, I received six weeks of invoices all at once from this worker.

Normally invoicing is fortnightly.

When I asked what happened, she casually replied:

“I just didn’t need the money.”

And suddenly the entire mismatch became crystal clear.

Because from her perspective, the invoices were personal income.

From my perspective, the invoices were part of a tightly managed disability funding ecosystem involving:

  • NDIS budget tracking
  • forecast planning
  • support coordination
  • service sustainability
  • compliance
  • future care security

She was thinking personally.

I was thinking systemically.

Neither perspective was malicious.

But only one of us was carrying the cognitive consequences.

“I’m Really Sorry” — But What Does Responsibility Actually Look Like?

One thing I’ve started questioning lately is the role of apology in disability support.

Support workers often say:

“I’m really sorry.”

And I believe many genuinely mean it emotionally.

But emotional remorse and operational responsibility are not always the same thing.

Because if the same patterns continue repeatedly:

  • lateness
  • vague communication
  • poor planning
  • delayed documentation
  • frequent cancellations
  • inconsistent follow-through

…then eventually the apology itself starts placing emotional labour back onto the Participant.

The Participant is subtly expected to:

  • reassure
  • comfort
  • minimise
  • empathise
  • absorb inconvenience gracefully

while simultaneously managing the practical fallout alone.

At some point, disabled people stop needing apologies and start needing systems.

Not perfection.
Not robotic professionalism.
Not emotional coldness.

Just reliability.

Because reliability is care.

So What Actually Fixes This?

Not cruelty.
Not punishment.
Not “being harder.”

Structure.

Clearer role definition.
Cleaner boundaries.
Less emotional cushioning.
More operational clarity.

Things like:

  • cancellation cut-off times
  • direct yes/no communication
  • expected invoicing schedules
  • mandatory shift note completion
  • lateness protocols
  • after-hours contact boundaries
  • reduced emotional reassurance from Participants

And perhaps most importantly:

Participants need permission to stop parenting their support workers emotionally.

Because that is what many of us quietly end up doing.

Especially women.
Especially traumatised women.
Especially autistic women.

We mistake emotional labour for kindness.
We mistake flexibility for compassion.
We mistake rescuing for safety.

But eventually, the support relationship stops reducing our load…

…and starts becoming another thing we have to manage.

That’s when resentment begins.

Not because the worker is evil.

But because the disabled person no longer feels held by the support structure itself.

And I think that’s the real issue my friend and I have both been trying to name all along.

My Voice

It was in the middle of my story that a lady once said to me “I don’t know about your daughter, but you are definitely autistic!” I was to find out how pivotal that that statement was to become. When I finally got my Autism diagnosis five years later, it came with a curious one – Alexithymia. Alexithymia still turns heads, or gets me quizzical glances, but in summary, it’s simply explained as emotional blindness. Unfortunately, due to the extremity to which I experience it, I have regularly started to see a pattern of behaviour “show up” in my life. The following is eight stories of my “voice” being stolen or me being “silenced”. And ultimately what I’m doing to reclaim it!

Imagine someone walking into your house and deciding your favorite chair is actually a pile of laundry. For a decade, my ex husband and my parents did that to my very name. By refusing to call me “Tracey” and insisting on “Stacey-Jane,” they weren’t just being traditional; they were performing a daily act of “Identity Erasure.”

To an AuDHD brain, your name is your anchor, the one thing that keeps you grounded when the world feels like it’s spinning too fast. By ignoring my voice when I said, “This is who I am,” they were telling me that I didn’t matter. Reclaiming my name in 2019 wasn’t just about filling out some paperwork (I put in a legal change of name); it was a choice to recover. It was the first time in years I heard my own voice echo back at me with authority – and an authority I chose. I wasn’t just a character in their story anymore; I was the author of mine. Legally choosing my name was the moment I stopped being “theirs” and started being “mine.”

For someone living with MS, where your body can feel like it’s betraying you with every flare or “hug,” having a name that belongs entirely to you is a clinical necessity. It’s the “Safe Base” I return to when the brain-fog gets thick. And now I get to proclaim that choice with every phone call, and every conversation. I do catch myself sometimes apologising for “making a scene” about my name, but then I remember how long it was erased for and what I had to do to get it back.

I was employed in a Disability Support Organisation in 2022-23, which ultimately bullied me into silence, using my very disability as the excuse. I am still recovering from this one. If you want to understand what it feels like to have your voice stolen, look at that boardroom table in February 2023. My employer, who said all the right things in front of an audience, didn’t just want to talk to me; she wanted to isolate me. In an inappropriate disciplinary meeting, she forced my support person and advocate, Nancy, to wait outside, effectively stripped me of my “assistive technology” for communication.

For a person with AuDHD and extreme Alexithymia, an advocate isn’t a luxury—they are the bridge between a racing brain and a confusing world. Making Nancy sit in the hallway because she spoke, and then telling me that the only way the continue the meeting was to have Nancy out of the meeting was like taking away a wheelchair and then asking me why I wasn’t standing up for myself!

Once I was alone in that room, the “Silence Rule” took over. My brain did exactly what it’s programmed to do under extreme threat: it went into a total Freeze response. While management lobbed accusations at me, my internal “Performance Part” was smiling and nodding just to stay safe, while my actual voice was locked in a basement somewhere deep inside. They knew that without my advocate to translate the “corporate-speak” into something my neuro-spicy brain could process, I would be defenseless. They didn’t want a conversation; they wanted a monologue.

This wasn’t just a bad meeting; it was a strategic silencing. They relied on my disabilities—my inability to name my feelings in the moment and my tendency to shut down under pressure—to ensure I wouldn’t fight back. It was a literal theft of my right to be heard. By the time I walked out of that room, I felt invisible. It took months of listening back to the recordings and talking to the Psychologist to realize that I wasn’t the one who failed in that room – their processes made certain I could not be heard!

In the world of the NDIS, my home is supposed to be my sanctuary, the one place where I can drop the “mask” and just exist. But my employer, decided that my sanctuary was actually their HR department. They took my voice as a vulnerable NDIS participant—the moments where I was venting, crying, or just being “messy” in my own home—and turned it into a “Sword” to use against me as an employee. They took my truth as a disabled person and reframed it as “professional misconduct.” It’s the ultimate betrayal: turning your safety into your liability.

This conflation of roles is a special kind of “crazy-making.” Imagine trying to regulate your nervous system after a hard day, only to realize that every word you say to your support worker (who happens to be the boss’s daughter!) is being logged as a reason to fire you. They stole the safety of my private voice. They made me feel like I had to “perform” even in my own living room, effectively erasing the line between my life and my job. Yes, it was messy, as I was both an Employee and a Participant with the one Company, but the responsibility for making those lines clear was theirs, not mine. When a provider uses your disability as a weapon, they aren’t just a bad employer; they are a threat to your autonomy.

The WorkCover Regulator eventually saw through it, calling their actions “unreasonable,” but the damage was already done. They had turned my “Shield”—my right to support and vulnerability—into a weapon. And if I’m honest, I’m still paying the price. It takes a lot of work to reclaim the idea that I’m allowed to have a private voice that doesn’t have to be “professional” 24/7.

Now, I just have to remind myself that my vulnerability is a strength, but only when it’s in the hands of people who actually respect my boundaries – it’s a tough gig!

Silence isn’t always golden; sometimes it’s a lead weight. Back in 2018, my recordings captured a chilling pattern of what I call “Weaponized Silence.” I would be trying to have a basic human conversation about our daughter or the household, and my ex husband would respond with… nothing. Just the bright, happy theme song of ABC Kids playing in the background while he sat there like a stone wall. It’s a form of psychological erasure that makes you feel like you’re screaming into a vacuum. If he didn’t answer, then in his mind, I didn’t exist.

Then there was “The Glare.” When I’d ask for something simple, like help with J’s bath because my MS fatigue was hitting hard, he wouldn’t say “no”—he’d just give me that look. It was a visual “shut up.” He’d follow it with a dismissive “I’ll talk after dinner,” which was code for “I’m going to control the timing of your voice until you’re too tired to use it.” By delaying and denying the conversation, he made sure that the only voice that mattered in our home was the one that wasn’t speaking.

To a cPTSD brain, that kind of silence is terrifying. It forces you to fill the quiet with your own worst-case scenarios and “scripts” to try and fix the problem. You end up working twice as hard to be heard, which only plays into the “crazy-making” dynamic. He knew that by staying silent, he stayed in control. Reclaiming my voice from that silence meant realizing that I don’t need his permission to speak my truth. My recordings from that time are now my evidence—they are the sound of me refusing to be silenced by his vacuum.

In 2020, I thought the legal system would be my megaphone. I had the recordings, the evidence, and the history of domestic violence all ready to go. But when the Family Reporter sat down to write his report, he didn’t just miss the point—he erased it. He explicitly ignored the documented history of abuse and favored the “calm” version of my ex over my “dysregulated” truth. It was systemic gaslighting at the highest level. The expert whose job it was to hear me chose to hit the “mute” button on my trauma instead.

This failure forced me into a “tactical retreat.” My lawyer had to pivot to mediation just to keep my daughter and I safe, because the system had effectively told us that our voice had a value of zero. It’s a heartbreaking realization: you can speak the truth with all the evidence in the world, but if the person holding the pen refuses to write it down, you are still invisible. The legal system “stole” my voice and handed the microphone back to the person who had spent years trying to silence me. Thankfully the Law changed in 2024, and we don’t see as much of this erasure now.

Sometimes the theft of your voice happens in the smallest moments. In 2021, a taxi driver made a casual, inappropriate comment about giving my daughter a sibling, and I was left “genuinely speechless.” It sounds like a small thing, but for someone with cPTSD and Disassociative Identity Disorder that is programmed to stay safe, that silence was a “Freeze” response in action.

My brain knew a boundary had been crossed, but my voice was stuck in my throat, paralyzed by the need to keep the social interaction “pleasant.”

This is the hidden cost of “Masking.” Even when we know we should say “Enough!” or “That’s inappropriate,” the AuDHD mask often smiles and nods because it’s the path of least resistance. We “exist” in those moments instead of “living” our truth. Being speechless wasn’t about being shy; it was about the DID taking over to protect me from a perceived threat. It’s a reminder that my voice can still be “stolen” by my own survival instincts if I’m not careful.

I wrote about that incident because it was a “Speed Bump” moment for me. If I can’t speak up to a taxi driver, how can I speak up to the NDIS? Acknowledging those speechless moments is how I train my voice to stay online. Now, when I feel that “Freeze” coming on, I try to remind my brain: “We aren’t in 1984 anymore. We are allowed to have a voice, even if it’s loud, even if it’s uncomfortable.”

The most terrifying way to steal a mother’s voice is to use her child as a hostage. In November 2018, as I was trying to leave for an ASD support group, my daughter’s father looked at me and said, “I might shake J as soon as you leave.” It was a “Terror-Gag” of the highest order. He knew that by saying those words, he was ensuring my silence. If I left, I’d be too terrified to speak to anyone at the group; if I stayed, he won by keeping me isolated. He used my love for my daughter to lock my jaw shut.

This is the “Sword” at its most lethal. He wasn’t just threatening a child; he was threatening my sanity. He knew that my AuDHD brain would loop that threat over and over, making it impossible for me to focus on anything else. He stole my ability to speak up for help because the “price” of speaking was the safety of my child. It’s a Catch-22 that leaves you feeling like you’re dying whether you speak or stay silent. It’s the ultimate act of emotional terrorism.

But here’s the thing about a voice—it can be recorded even when it can’t be heard. I caught that threat on a recording, and that recording became the “Shield” I used to eventually get us away from him. He tried to use fear to ensure my silence, but he didn’t realize that my “over-thinking” brain was already building a vault of evidence. My voice might have been shaking in that car, but it was still being documented. Today, that threat is no longer a gag—it’s a permanent entry in my records that proves why we are safe now.

The NDIS has a way of stealing your voice through bureaucracy that is just as exhausting as any individual bully. Over the last four years, I’ve been through ten Support Coordinators. Every time a new one starts, I’m forced to perform the “Trauma Recital”—retelling the story of the 904 days, the MS, the bullying, and my daughters complex needs just to get them “onboarded.” It’s the “Theft of Momentum.” You spend all your energy “starting over” instead of “moving forward,” until you’re too tired to tell the full truth anymore.

This constant churn silences you through “Trauma Fatigue.” Eventually, you start giving the “abbreviated version” of your life because it’s too painful to open the whole vault for someone who might be gone in three months. Your complex, nuanced life is replaced by “Case Notes” written by people who barely know you. The system stops hearing your voice and starts hearing the voice of a “standardized participant.” You become a “complex case” instead of a person with a history and a future.

For me to “unpack” my complex history of losing my voice, I have been building a “Life Library” in an a Large Language Model (more commonly known as AI). For those of us with such a messy story, and being as spicy as what my brain is, to have all this information in one “portal” is so critical. I refuse to let the “Revolving Door” of coordinators erase my continuity. I am now the one who holds the thread from 1975 to 2026. My voice isn’t a “recital” for the NDIS to judge; it’s a record for me to own. By documenting these 8 points, I’m making sure that the next time a coordinator asks, “So, tell me about your situation,” I can just hand them the Shield and say, “Read this. My voice is already on the page.” But if I’m truly honest, it’s also helping me on the recovery journey, to one day tell the story of me. 🙂

Success journey business concept with a businessman high up in the sky walking on a rainbow as a metaphor for financial opportunity direction and wealth strategy by following a winning plan leading to fortune.

Covid Testing Choices

Today’s story started from a text from my sister – it’s Australia Day, a public holiday, and in Queensland, vulnerable kids and those of essential workers went back to school this week.  My sister rang me on Saturday just gone, and borrowed some money (yeah, not getting into why I continue to say yes), however it was to help her get my nephew back to school on Monday.  So he attended school on Monday just gone, got sent home on Tuesday (yesterday) with a runny nose – the Omicron variant is rampant in most major towns and cities along the eastern seaboard at this point.  She then texts me with news that one of her friends that she has seen recently, has Covid, and has come up in a rash.  She herself has started a new job, picking fruit, and has also come up in a rash, and asked me what she should do.  So, at this point, I am double boosted – yep, you read that correctly – our Government is pushing for the country to get boosted, and I have been down that path twice – but in all fairness, I have MS, and getting Covid, could impact my life significantly.  So, when I give her the advice that seems most reasonable, and what other reasonable people would have told her – which is go and get a PCR test – her response was to blame the rash on stress, choose to keep her son home from school for the week, and complain that she is no longer in the industry that she used to work in.  There is no emoji that describes the expression I have! 

I feel sad that no matter what I say, there is no way to explain the impact that her narrative has on both her and I.  I’ve said this before, I can’t offer a labotomy, and cannot undo the damage of a lifetime of trauma.  I do feel that the only option is the sad path that others have taken – walk away.  Is there a path for a trauma-bonded victim?! And the best words I have to explain all this is sad?!

On a different note, Dylan Alcott has just won our Australian of the Year – the first time in the Award’s 62 year history that a Person with a Disability has won the Award! I look forward to the year of conversations that he will undoubtedly create.

#dylanalcott #disabilityawareness #AOTY2022

The Fun Stuff! More of the Journey …

Do I forget the fun stuff that I’ve done over 46 years, or is there just so much trauma, that it messes with the Neuro-transmitters, or maybe just more of this flower opening realisation that I have spend soooo long on the destination, I miss the journey – EVERY STEP OF THE WAY!?

As I’m sitting at home on an uneventful Saturday morning, although silently anxious since Advent is only 17 days away, and I’m not even close to being ready, a reminder comes up on my google photos, which leads me into the the usual deep-dive, time wasting rabbit hole of doing everything except what I sat down to do – and I see a photo. A photo that reminds me that when I was once far braver than I am inclined to be now (thanks to having a 7yo), I stood at the edge of an active volcano for hours, and and marvelled at the molten lava spewing from the earth in its uncontrollable, yet mesmerising form. Yeah – I willingly climbed an active volcano, and smelt that sulphuric acid for hours, and took days to get that ash from my hair ears and nose. Lots of people have done this, but of all the people in the world, and certainly of the one’s that I’ve met, not so many. And yet, when asked what cool stuff I’ve done, my brain fails to remember that I have even had this experience. 

10 years prior, I jumped out of a “perfectly good aeroplane”! … I was in San Francisco at the time. I’ve walked the streets of Paris at night, being comfortable with the culture and language, despite growing up in a very small regional town in Australia. I’ve done a New Years Eve in Sydney as a single person on a blind date, and caught fresh tuna in the ocean and cooked it on a beach … yeah, I’ve definitely enjoyed moments.

And yet … to get my brain to recall any of these lovely memories, it has to process the other stuff. Who I was with, why I was there, what happened beforehand, or after – the stories or narratives we tell ourselves. In the autobiography of Clare Bowditch “Your Own Kind of Girl”, she remarks that this book is about the ‘stories we tell ourselves’. My interpretation, it is the changing of the narrative. 

I’ve been on the theme of ‘my journey’ for a little bit now (ok, for a lot, since it’s in the Bio for the page), but if there is capacity to change the narrative, the ability to remember the fun stuff, what’s the link for me? 

There is the ever-grinding remark from the psychologist … mindfulness … or grounding ourself to the now. I also wonder if it’s in the sharing. Being brave enough to truly be vulnerable with another person to share … and be shared with. 

So no, I don’t think I’ve forgotten my life over 46 years – it’s just seen through a different filter. Yes, there is trauma, and a pretty decent amount of it, but time, and and active choice to heal is part of that journey (not a destination). There is also a willingness, although it does take a moment or two, to look at each part of the story with a new realisation. And really, there is constant forgiveness – for all the things I’ve said, done, thought, to me and other people. 

It’s a really ugly moment when you realise that part of the reason you don’t tell a story, or even just forget it, is you have no way to spin it in your favour. But eff, what a beautiful trusting moment is shared when you become brave enough to do that – but that can take decades. 

And now, it’s off to enjoy a delightfully “who know’s what” kinda day – I don’t get many of those. 😁🌈

Mount Yasar, Vanuatu. 2013

Mindfulness for a Scatterbrain.

Likely lots of people have described their experience of having a neuro-diverse brain, but with the recent purchase of the new iPhone 13, comes lots more notifications to be ‘healthy’ – my phone and watch telling me to breathe, wash my hands when I get home, drink water – you know, all those things that are supposedly good for us, but who really has time for them? – We are too busy LIVING! (or more precisely, existing begrudgingly from one societal expectation to another).  

Aside from my slightly dark view of being above ground (ok, I’m not really that pessimistic, just some weeks feel a little that way – a motivation behind this piece of writing?!), I have got quite a connection to Apple products, due to their accessibility options, and effective support of disability.  I also am consistently (and in my opinion, annoyingly) encouraged by my psychologist to be more ‘grounded’ – apparently it helps in overcoming some of the mental health barriers.  

So today, on a day that has relatively high anxiety due to some expectant negative news from the Doctor early next week, I thought I’d take the advice given … It’s worthy of noting that my Apple Watch has the ‘Breathe’ icon listed in the computations of the watch face, so all I have to do is press the button … 

I pressed the icon, chose ‘Reflect’ (1 minute), and this happened … displayed on the watch face, it reads:

Bring to mind something you are passionate about. (Begin) … Really, just one thing? What the hell is the Apple Watch trying to do to me? No thoughts come to mind.  Immediate freakout – am I passionate about too many things, or nothing at all?  Am I only passionate about crap that other people are interested in, since I don’t feel like a like I have a sense of self? Nah, negative self talk is going to be annoying, even to me here.  Hey hold on, maybe I should do an ECG first?  How cool is this feature? I love the iOS 15 update!  Ooh, I wonder if the ECG heartbeat can be printed out or emailed to the doctor?  Hmmm, do I need to order more printer ink?  Oh, I’ve got so many emails to print. I’m nearly up to 100 emails again. Crap, I was supposed to ring my friend earlier. Aaah, might text tomorrow, so I can let her know about Monday. Oh, god I wish Monday was finished. Ah, that’s gonna suck having to put in the complaint about the anxiety attack. Eff. I so don’t want to go.  Why can’t doctors just email reports to you. Jeez.  Ooops, what the hell am I supposed to be doing? Why am I pretending that I can even be mindful? Are people lying when they say they do meditation every day?  How is that even poss – What was that noise? What is my child up to now?  What is she screaming about?  Aargh – I just want 60 seconds to myself!  Who am I kidding – this is going to take more than 60 seconds … 

Take a breath.  Start again.  Whoops, just noticed I hadn’t actually pressed the ‘begin’ button.  OK, pressing that.  Nothing happened.  Literally sat and watched the same words on the one and a quarter inch screen of my watch for 60 seconds, and then it came up with the next question … “Enjoy how it helps you feel fulfilled“.  I want to cry right now.  Eff – I can’t even effectively reflect!  

And then it had the hide to mock me with “Carry this sense of fulfillment with you“.  Go jump, Apple!! 

I’m sure it would be comical if I wasn’t trying for real. And then a quote by someone famous comes to mind – “If at first you don’t succeed, try and try again.”  Aaah … ok.  Thanks Robert the Bruce, King of Scotland for your wise words.  Because the truth that became obvious in that sixty seconds of thought diarrhoea that I have just endured, is that I can reflect.  Sure, the tangents that exist in those sixty seconds of neuro-diversity is a little eye-brow raising, thankfully still PG, but so beautifully honest and raw – once I take a breath. 

Because if you’ve just read what I’ve written, at the speed to which it happened in my brain, you’ll understand very quickly that the important part of ALL of it is … take . a . breath .  A lovely teacher once told me that the benefit to mindfulness is that it creates a space between thought and response.  I like this view more than this idea that I should be “grounded in the present”.  Then again, maybe the real reflection of today’s sixty seconds is that there is a valid space for both.  Having a mind that doesn’t do linear thoughts easily, maybe success and a sense of fulfillment is achieved by realising that by being brave enough to practice stopping for sixty seconds each day, and just taking a breath, appreciating the space that’s created that allows for a response, and then focusing on the current moment, I can see that I am passionate about … neuro-diversity (oh, look at that, brain … carry this sense of fullfillment with you!).  I am definitely passionate about allowing others to really know and appreciate the rainbow of the human condition.  

I now encourage you to find sixty seconds … 

Continuation into the Journey of Me.

Stardardly, any piece of writing that includes continuation in the title, would be a follow on from a previous article, but this one cannot be.  It cannot be, because self-awareness came after – but before pressing publish on the first article, and with new insight, came a different ending to the piece, and I just couldn’t change the last one in the way that I wanted to, that allowed full respect for everyone involved, including myself.  Heavy start done, now to what happened, and I will bring some of the details from the previous unpublished article into this one. 

There was 10 days – I know, right – just 10 days, between meeting a pleasant human being that I purchased a musical instrument from (my child wanted, and of course, I made happen), and when I penned the first words to get the rattling thoughts out of my head.  There’s no secret that I’m autistic, but flippen hell, it would have been nice to get notification as to how my neurodiverse brain was going to process those 10 days.  But for me, this was the beginning of a journey, in what I suspect, and now hopeful for, will become my journey to fall in love with me.  But right here lies the problem.  

I have referenced a journey, but to be honest, I’m not good at journeys. I don’t like surprises either.  I’m so much better if I know the end result. In the irrefutable words of a very wise human, I like to “future-proof”. This applies to potential friendships, my cooking with a thermomix, my health, my child, situations, my death – you get the picture. This need to know the end, the direction, what’s likely to happen, is so inherent in EVERY thought and behaviour, that it literally creates one of the many conditions I have been diagnosed with – Generalised Anxiety Disorder.  And as I read the paragraph from the original post, it started with “The full story hasn’t been written yet, and it’s definitely not the end … “, it’s actually comedic how definitive it was.  But sadly, it also set up 10 days of unfortunately, unhealthy behaviours from me to another person, and a couple of weeks of borderline toxic thinking.  

But for a topic about falling in love with me, self respect, self awareness, seems a little discordant to be talking about my toxic thinking – how did it get here?

The issue that became glaringly obvious to my delightfully overthinking brain, when I realised that big emotions might possibly put a crack in my cold impenetrable heart, is that I actually have no skills in this area.  And this is where it got dark and heavy – I actually had gotten so used to future-proofing interactions with any humans, I didn’t stop to allow the other person to show me who they were – I projected onto them who I needed them to be. This feels safe for me. There’s no unpredictability. I know how it’s going to turn out. I know, and can take time to investigate what emotions are likely. I don’t have to be grounded in the now, because dammit, who really likes that slow and steady journey of self care and knowledge?! (Shhh … don’t answer yet!)

From the original post:

But this journey started way more than 10 days ago – this has been the journey of a lifetime. See, growing up, I wasn’t the child that knew myself. I was however, the child that became exceptional at masking who I was and what I thought and felt, so that I fit into this neurotypical world. Second oldest of 5 kids, in a pretty shitty family dynamic, with a physically, psychologically and sexually abusive father, and a disabled uncle that lived with us that was also sexually abusive, a scarily schizophrenic uncle that also smoked heavily and my Mum, that tolerated it all, but was unable to protect us. 

While it’s not a trauma I hide, and the perpetrator has since passed away, the sexual abuse of me when I was 15 years old, 30 years before receiving my Autism diagnosis, has had, in the simplest of terms, the most significant impact on my lifetime mental well-being and ultimate view of myself. 

But then there is also the world view of “2 failed marriages”, 10 years in a church cult, a survivor of domestic violence and single parent with multiple disabilities – which all sounds a bit dramatic, right? It is.  However, thanks to one persons vulnerability, and some exceptional writing by an amazing author (and possibly my need to always be learning more), I may have stumbled on a new thought – DESPITE all of this ‘baggage’, I still have every right to love and be loved. (And don’t even bother with the DUH! – I know it’s basic – but it’s still a new concept for me!)

3 years ago, I read a book that gave me permission to re-evaluate my friendships every month, and boot out the toxic ones.  While one of my dear friends still laughs at how clinical this is (and let’s be honest, autistic), it really does serve me well in seeing unhealthy patterns of behaviour.  What it doesn’t do however, is open up opportunities to let new people into my world.”

More often than not, along with our Neuro-Diversity Diagnosis, we get given the encouragement that we have a ‘superpower’ (I’ve always suspected that this is because to get diagnosis in the first place, it’s based on a deficiency model). My superpower would have to be the capacity to over-think! Ok – call it reflective or critical thinking, if you need to, however one of the reactions to the childhood trauma, and then the domestic violence, was to create safe systems. As more recent research has shown, other increasing responses to early life trauma is emotional dysregulation and Alexithymia. Understanding that I have limited capacity to label or process my emotions effectively, is it any wonder that I have attached heavily to a book that lists out 30 toxic behaviours, and encourages us to review our friendships monthly? What it doesn’t do, and maybe I need to find another book for this purpose (or write my own), is 30 self care strategies, or ways to light up my own dopamine receptors! 

So, the awakening over 10 days felt a little brutal, but it did give me some insight and allowed me to be even more vulnerable with a few of my closest friends. From someone else’s words “I think the attraction of candour is that someone might really know you”. Powerful words, and yet so intimate – just imagine if that someone was myself?! 

And the final paragraph from the original post … “But what is definitely coming back is my willingness to let people in. It’s hard, and I’m not a straight up fan of being vulnerable, but in the last 10 days, I’ve realised that I’ve still got a life to live, and I want to be on this journey to rediscover me!

The Grief of Changing Schools during a Pandemic

Why would I consider changing schools for a Prep Student during the middle of a worldwide pandemic? It’s a level of grief – really. I am not sure I can explain it any better than that. It’s all the little expectations that are not met along the way. It’s all the small incidences where the hope that the system will not fail my child, but has, or the response is going to be better than it’s been in the past, but again isn’t. How do you explain to a Teacher that asks “what’s the actual problem?”, that the problem is enmeshed into the very reason she’s asking the question? And there’s not a significant incident to talk about, but instead its all slowly chipping away at the edges of our personality so that we fit inside the education system that is designed for a ‘majority’.

So, it’s now June 2020.  We’ve survived what turned out to be the first of many Covid-19 pandemic lockdowns this year, started my 5yo in Prep at a school that we had 18 months of conversations with, to ensure it was the ‘right fit’ (I’ll clarify the issue with that in a bit), and for most part, only had 2 major concerns with the school that have required ‘public’ conversations with her Teacher in 6 months – not a bad innings I would say.  And possibly from the school records, I would suggest that there’s probably not much more on her One-School file than that.  She has entered a school with 713 other students (approx), and immediately attended full-time, in a mainstream class of 23 students, with only herself and another student going into her classroom with diagnosed disability.  

We met with Head of Special Education numerous times over the 18 months, and asked what we thought were appropriate levels of questions for first time parents sending a child with higher needs into a mainstream school.  We even got to meet all the Prep teachers, and had our pick of classrooms (based on the identified needs of my child) and teachers that would best suit her.  I would say that the first ‘failing’ of this system, was entrusting that I had the knowledge and capacity to ask the right questions of the school, given that I have not had any experience of being a parent with a child at a school – there’s something to be said for lived experience.  There’s also something to be said for the Head of Special Education to not identify this obvious lack of knowledge, and guide us further in this area.  In hindsight, we didn’t get any tours of Special Education Rooms, Technology Rooms, Music/Dance Classrooms, even any classrooms beyond the Prep classrooms – everything was cursory glances.  I had not met either of the Assistant Principals or the Principal until AFTER my child was an enrolled student of the school.  Hindsight is 20-20 though! (And as I prepare to make this article live on my blog, almost 12 months later, we did make a change to a new school, and the new school offered meetings with Teachers and Admin leaders of the school, but only cursory glances of classrooms – so it really might be a department issue.)

Mid January 2020, Teachers chosen, classrooms decided, and school books and uniforms organised, we are notified via letter to our home address (where the basic detail of my child’s name and address were written incorrectly), that my child’s teacher was not going to be her teacher for the first 4-6 weeks due to an unforeseen operation.  

I should point out at this point, that my child is diagnosed ASD, but despite the label, what was communicated very clearly to the school early on, is that advance notice of change is crucial in my small child’s world.  And this is where the grief starts – that relief Teacher could have been AMAZING, but we were never going to get to find that out.  Because what happened for us, was that the first erosion of trust came from the letter that was sent home having the BASIC details about my child handwritten incorrectly on an envelope.  That letter invited us to go into school the week before school started to drop-off books, and attend a BBQ that was put on for new families – but we had to go in and spend the time meeting the new temporary teacher (knowing she was temporary), explaining the needs of my child, so that my child had the tools to cope for the first couple of weeks.  2nd erosion of trust.  

First day of School – 3rd (and major) erosion of trust – my child’s father breached a temporary DVO, and direct instructions from the Principal and turned up to my child’s classroom at 10am in the morning, and I was not notified, until I arrived at the classroom at 3pm that afternoon to collect her!  It was explained as “we had it under control”.  I can’t even explain further the emotional damage this event caused.

There was the Chronicle’s “My First Year 2020” Photo’s, that the promotional brochure was put in our Pockets in the classroom, so that we remembered to buy the Chronicle on 24th March 2020 (and we were under Covid lockdown by this stage), only to find that for some unknown reason, my child wasn’t in those photo’s – and of course, the school doesn’t list the names of children, so my child gets the first visual reminder that she’s different, separate, and not one of the group.  And because we were in isolation, and me not being an ‘essential worker’, we really had no recourse to ask any questions as to why this happened the way it did – just left with the sense of disillusionment.  

But by week 6, the actual teacher had started in the classroom, and within 2 weeks, we had the first ‘big incident’ – my 5yo believing that she was wrong on everything that she did.  With some creative questioning from the OT, it was nailed down to an incident at school, and so I approached the teacher … to find that yep, she had indeed told the whole class in a teachable moment that “if they’re A’s didn’t look like this, they were wrong!”  I get it, sometimes, you do have to make broad statements, but this is where the grief for me lies.  The question I had at the time was, “You know that my child takes your words literally.  Did anyone approach her and clarify your statement?”  Nope – we have to teach for the majority.  The majority of students understood what the teacher meant, and my child didn’t show any obvious signs of distress, until she was in a safe place – at home in front of Mum.  How many times does my child have to hurt in silence?? And because it’s her first year in the Education system in Australia, she is yet to be ‘verified’, and so there is only one Teacher Aide for 23 students – one very amazing teacher aide, but again she can’t be everywhere at once, so the issue went unnoticed for nearly a week. 

And then there have been the days where we have rocked up to find a Supply Teacher or Teacher Aide in the classroom – we have a communication system in place that DIRECT messages me, so that I can notify my child, or make a choice to keep her at home if the change is going to cause major meltdown, and consistently this is not utilised.  I feel like I am getting used to it, but like abuse, it erodes a little piece of me each time. Like the time in Week 7 of Term 1 where my student won Reader of the Week, and I didn’t get a notification to attend Parade to support my darling child on Parade – my child, the Empath, the one that gets to see every other Child’s parent come and support, but their own parent isn’t there!  I cannot, even now, many months later describe that heartbreak for her.  

There’s been cute stories too – my child being ‘handsy’ with another child in class, which sounds adorable.  It’s not – my child and another child were kissing each other – slightly more than handsy!  As a parent, I don’t need to be alarmist, but I do need that information to be accurate.  In the classroom, my child has been allocated a square at the ‘front of the mat’ (so the teacher can keep an eye on her), however this just feels discriminatory to me.  I should point out at this stage that my child is also delightfully empathetic – so she senses emotional intent.  She is aware that she has to sit at the front of the mat near the teacher because she is ‘one of the naughty students’.  

And Covid – now NONE of us had this easy – really – and there was no reference manual as to how it should have been handled, because the modern world had not seen anything like it before.  But, it genuinely doesn’t take away from the erosion of trust in a school system to support the needs of their community in times of crisis.  We entered this particular school system, transparent about our vulnerabilities, my childs’ needs as well as my own.  Early on during lockdown, I got a call from the teacher to ‘check-in’ (nice, but probably needed to happen on a far more regular basis), and I will add in here, why didn’t I get a call from the HOSES team?  My child is going through Verification at this school, so they were aware of the higher needs of our family.  That teacher focused on the effort she put in to do a fish puzzle for my child, and while lovely, totally missed the needs of my child during this time.  All the while, it was promoted by the teacher and school communication, that any child still at school as only receiving supervision for the 6 hours that they were inside school grounds – but of course, when I finally send my child back to school, I find this to not be the case – they are genuinely learning in the Prep classes, because Supervision “would not work effectively for the Preppies”.  Yep, another erosion of trust, because my child missed out on 5 weeks of school because of mis-information.  And then when I did eventually have to make the call to send her back, earlier than the Government recommended timeframe, I was made to feel like a leper by the Principal because she was not a ‘child of an essential worker’.  

It does lead into a side point of the fact that during the whole lockdown period, my child was a vulnerable student – we knew this, and feel that it’s a system issue.  The school, along with a number of Support Organisations, aren’t the first to acknowledge vulnerabilities, and it consistently feels like you “have to cry wolf” to get the response you have a right to.  While it doesn’t make it right, I do feel that being proactive in this modern world, doesn’t get you the help you need.  Examples: Teaching a child that a stove is hot, rather than waiting until they burn their hand and need medical attention; Funding for exercise as a preventative measure under Medicare, rather than waiting and funding it under disability as a response measure; Funding frontline DV workers to talk to victims in crisis, rather than funding at both levels, victims and abusers, to stop the cycle; Even not getting medical diagnosis until hospitalisation, rather than believing the patient, or making it affordable for the patient to seek help in the first place.  Funding, time, energy and attention seems to be given to those that are already broken, or are so very close – not really effective for a proactive person such as myself.  

Now onto behaviour management.  When I read the Enrolment Pack in 2019 (yep, I am one of the parents that reads information before signing it), I recall the brief sadness of knowing, that due to my child’s Neuro-diverse responses to life situations (and my support of them), she would unlikely get any major behaviour awards during her time at school – that was ok – I was prepared to support her emotional journey to be an independent thinker, and not need external validation to have a healthy sense of self.  What I was unprepared for, was the discriminatory way that the school goes about explaining these awards to Preppies!  At some point, over the past couple of weeks, Gold behaviour awards were explained (either directly or indirectly) to my child as “when a student is good” and “when a student is bad”, and unfortunately, this means that my child now has quite a black and white view – of her own behaviour!  And the explanation came a week after she was sent to Behaviour Management classroom because a Teacher-Aide that did not understand her, missed the fact that she needs extra processing time once given a direction, and my child was sitting at AMBER (bad children) level at the time.  

Explanation by the teacher, is that the Behaviour Management strategies HAVE to work for the majority.  “We have to teach them the skills they need to be functional in society – would you like someone to come up and punch your child in the head without warning?”  Clearly not, but I also don’t want to teach my child that the ONLY way to hurt another human being is by hitting them.  I think that the premise is that you become a functional member of society if you don’t physically lash out at another human being.  There have been a number of comments around this school of verbal abuse and bullying going unreported and not dealt with by the school, it does make me question the true value of that majority thinking – and most especially when explained to a small child with the terms of good and bad.  And the recent incident that got my child sent to Behaviour Management, involved little Miss, and another girl in her class, that decided to be ‘balls’ (super cute, and they weren’t doing anything with mean intent), and they were kicking each other.  Teacher Aide asked them to stop, and the other child (who’s Neuro-typical), did immediately, and my child (who’s Neuro-diverse, and needs slightly more processing time), did not stop immediately.  Both children were kicking, but it was my child that was sent to the behaviour management classroom.  The school has a policy of no kicking or hitting, and I support that, but if they really wanted to send a child to BM for that behaviour, they should have sent both girls, not just the one that already has an identified difference, that they DID NOT take into account, even though it’s on record.  

Now, in the Classroom Teacher’s defence, once brought to her attention, she took action that means for the remainder of the year, all behaviour management decisions relating to my child, will go through her – and that’s great – but not effective into Grade One, so what happens next year? And if the school system isn’t able to identify and respond to my child’s difference this year, what makes me think it’s going to be any better in future years?? 

And then there’s the trust that’s eroded when you see the School Receptionist is nominated as the Secretary of the P&C Association – maybe it’s just me, but I do find it hard to believe that complete impartiality would exist in this circumstance.  A bit like the Behaviour Management Teacher being related to the Head of Special Education.  I struggle to believe that I am going to have a ‘voice’ in this environment – and to be honest, I am only getting one chance at this – I only have one child, with no chance of any more. 

There is also the unsettling issue of how an email that had my name attached was handled recently by the Head of Special Education – it’s not my issue to have, but it did lead me to try and make excuses for the HOSES behaviour, just so I can continue to have a workable relationship with this woman.  When I called her to task on the issue, her response was somewhat mediocre, questioning me on why I had an opinion on the matter, and completely missing the point that she had critically hurt my friend by her dismissive behaviours.  Then there’s the Principal’s handling of the issue with my child’s father turning up at the school.  Unfortunately, every interaction I have had with the Principal this year, I have found him dismissive – of both the impact of my Ex’s abusive and controlling behaviours, and my child’s needs relating to her ASD diagnosis.  His response in each case was “he has parent’s at the school where the Ex is worse than mine”, and “his child has ASD also” – just not helpful!  But then again, this is the same School Principal that will not allow a Speech Therapist to enter the school for a child that has diagnosed disability and funding for said Speech Therapist into the school grounds after Covid-19, because a Government Official hasn’t expressively stated that it’s allowed!!!  

All of this means that I haven’t yet put my hand up to volunteer at the school yet … 

And you might read all this, and think “we’ll, why doesn’t she homeschool?”  Thanks for thinking that’s an option, but with my own disability, it really isn’t – it just gets to be another level of grief.  

So, in summary, there’s a whole lot of grief here for me – I shed a few tears writing this (cathartic, actually), but I think I can relate it back to the critical point when you work out that a relationship has failed.  We might cycle though the stages of grief, with the middle stage being “bargaining”, but in the end, the realisation that the relationship has failed is still there.  I haven’t got a solution in place yet, but the cycle ends ultimately at HOPE.  Hope for a different way.  Hope that what we were learning in the education system about ASD and genuine inclusion 20 years ago, has been applied in a school somewhere. Hope there’s a school that understands how to put the needs of the children first.  Hope that I don’t have another 12 years of heartbreak.  Hope that I can find a community to support my goal for my child, and that is for her to become all that she wants to be, in whatever form that looks like.  

12 months on, we did move schools, and entered into a small classroom Special Education Environment, where my child had only 10 other kids in her class.  This has, for most part, been a much more positive experience, but it’s not smooth sailing. But every day offers a new level of learning, and a different processing of the grief. 

Emjay. Doing Life Differently 🌈

Message from a Sister …

This isn’t one of those posts that leads to a solution or an “ah-ha” moment at the end. It’s not even one that has a happy ending. It questions the truth of self-fulfilling prophecies, and the law of attraction.

My recent session at the psychologist (yeah, one day I will write an article on how worthwhile they truly are), was all about questioning some of my core beliefs. And to my surprise, one of core beliefs, which didn’t come up in the session, but continues to hold true, is that “as I start to make change in any issue, the universe sends something along to test that resolve”. I have to “prove” that I am stronger, healthier, mentally stable, capable, etc. Eg, I am saying no to ice cream, and my daughter pleads with me to go to McDonald’s and buy her and I a McFlurry – how do I say no to that?! 

The question that is often asked prior, as I am trying to make sense of my heightened state as a core belief is challenged, is “what’s the worst that can happen?” Eg, what if I am late to an appointment?; what if I say yes to ice cream, when I have decided to say no?; what if I don’t tell my daughter that I love her and the exact time that I will see her next, as I drop her to school of a morning?; what if I don’t answer that phone call? … truly, in my brain, an unrelated, but equally (potentially) tragic/scary event, that’s what! …  and that’s where we are at now … 

The unrelated event … I opened the Pandora’s box this morning with a realisation about my family, only for me to receive this message from my sister. 

Yeah, I get that isn’t the way the world works, but this is the way that my brain works, and I want to share this, because in reading this very long and messed up message from my sister today, I know this became more about her issues, and the psychologist is right – it literally has no power unless I give it the power to affect me.

So, for context, my Father passed away in March, as the patriarch of a toxic family, and names are changed to protect privacy. I will also add a little note that I found funny … my sister signed this email MHFA Accredited … and when you look up details of that, it’s a free course, that anyone can do, that talks about Mental Health, literally making her look like she has got authority on the topic, when in fact, actually has none at all.

~*~

I have spent the last week deliberating over whether or not to send this to you.  And tbh, I’m beyond disgusted that I need to, and no doubt Dad would be the same.  I have something to say to you all, and since I don’t have everyone’s email addresses, I’m sending to the addresses I do have.  TBH, I really don’t care if you pass on the message or not.

Celine – for as long as I can remember, you have always insisted that as the eldest, you were the most responsible.  Yet you not only failed Dad, you failed this family in the most spectacular fashion.  For decades you have criticised anyone who stole from those less fortunate – and face it, you can’t get much less fortunate than DEAD.  Yet here you are, making every excuse to justify your despicable act. There will never ever be justification for what you did.  There will never ever be room for forgiveness for what you did.  I’ve spent my life defending my actions to you –  I got into the Army….apparently it was because ‘they let anyone in now days’;  I had the first grandchild….you yelled at me, telling me it was your RIGHT as the eldest child, to have the eldest grandchild, and I was stealing what was rightfully yours; I fell pregnant with my second child….you accused me of ‘stealing’ your thunder because you happened to be pregnant at the same time.  And these happened before I was 25…the list goes on, trust me.

You asked me if I thought it was a good idea to be a prostitute – like who asks that sort of question of their younger sister.  You asked me if it was ok that you deceive your ex-husband to have a second child because you needed someone to love you unconditionally – how’s that working out for you now?? I began working in healthcare, but apparently I couldn’t possibly know as much as you, despite the list of accreditations I have accrued, because I haven’t been in the industry as long as you…pfft…what a joke!  I’m done having you question and criticise me, especially since you clearly can’t get your life on track.  No, I’m not perfect, but at no point in my life have I ever walked away from my children and not bothered to contact them for months!  It hasn’t always been easy, but I am proud of how hard I fight for my children – and how I’m teaching them there is a better way.

Stacey – I don’t give a flying rats what you choose to be called, just in case you decide to tell me ‘it’s Tracey’ in your contempt-laden voice.  For a long time I looked up to you.  You appeared to be intelligent and despite a few hiccups, you seemed to have clear life goals.  But looking back now, I can see the narcissistic behaviours which led to the demise of both of your marriages, and which will lead to the corruption of the innocent soul that is your daughter.  You made the decision recently to exclude me from your life – for what reason, I will probably never know.  You have always chosen to draw good honest people into your world, then seek to destroy them with overly controlling behaviours and a lack of love.  I’m thankful that I raised Benjamin strong enough to see past your bullshit (yes, he’s told me plenty of your controlling behaviour towards him).  

As for recent events, your behaviour at Dad’s funeral, whilst not surprising, was hideous.  In every photo my Daughter took of you during that time, you had the ugliest expressions on your face – most filled with contempt and disgust towards those around you.  Clearly you were there out of some mis-guided duty as his second-born daughter….he would have been ashamed….you should have just never bothered coming.  I pray that one day, your daughter is strong enough to see past your bullshit.  Oh, and feel free to send this to a lawyer – there are no threats in this, there is no harassment, there is nothing more than a sister expressing her thoughts and emotions – which is not a crime in Australia.

Shane – Since before you were born, Dad put your needs ahead of everyone else’s, even if it meant other people suffered at your expense.  And despite getting every opportunity, you did nothing.  You threw hate, contempt and illegal activities at everyone around you – and you didn’t care who you hurt in the process. There was a time when your actions almost resulted in myself and 2 of my children living on the streets.  Another time, you stole all the fuel out of my car, despite me needing it to travel with my baby some 400km – because clearly you needed it more than me.  You have threatened to kill me and anyone around you who doesn’t agree with you.  You use your health issues as excuses for bad behaviour, and you use violence to intimidate and control. 

For a short time, I thought you had overcome this.  Yet despite having a near-perfect woman at your side, you chose violence as the solution to your problem – and it got you arrested. Then, when I went out of my way, putting my mental health at risk, you chose to abuse me, rather than deal with your concerns like a civilised human being.  The list of atrocities you have committed in your life is more than any person I’ve ever met – to know that I’m related brings shame.  You don’t have Dad anymore to bail you out.  You don’t have Dad protecting you.  You don’t have Dad to help you fight your battles.  And all of us who were willing, are now done with your violent tendencies – you are on your own.

Melanie – The baby sister.  For decades I have defended you.  For decades I have helped you.  For decades I have gone against the grain to support you finding your feet.  I helped you in your darkest hours and your brightest days.  I have been the one person, your whole life, who had your back, no matter what.  So you can imagine the pain I felt, to have you throw my help back in my face, and treat me with such contempt – behaviour I expected from your siblings.  Not you.  Out of all the siblings, I expected better from you.  I’m truly heartbroken. Don’t let your lack of book-smart intelligence destroy your heart or mind.

To you all – I have removed you all from my social media accounts.  At this stage in my life, you do not deserve the honour of watching my children grow into civilised human beings.  You do not deserve the honour of being called Aunty or Uncle.  My children will never experience the horrible behaviour exhibited by you all.  And unless you work out how to fix this chaos – and fix it, my children will never know you.

Dad and I were not always on great terms, but even when I really hated him, there is NO WAY I would have treated him or his memory so despicably.  I miss him more than words can describe, and my mental health has taken a nose-dive since his passing – your behaviour added to my despair, which is why I decided to remove the open access once freely granted.  You all have my phone number…. I suggest for the foreseeable future, you don’t call.  Although, if you do have the overwhelming, uncontrollable urge to contact me, send a text, maybe one day, I’ll reply.

I wish you all whatever the universe believes you deserve.

Your heartbroken sister. MHFA Accredited. (Mental Health First Aider)

~*~