Week #1 check-in
Week one of the #RunForAutism charity challenge is done and so far I have hit 25km. It’s a decent start but thanks to the flu, some other factors and a busted foot it’s not as much as I would like 😜 I knew no matter how much I prepared leading up to it that something would physically happen to try slow me down but fuck it, we ball.
I have made a point to let myself have fun while out running. Dancing, lip syncing, singing, what ever strikes me at the moment as a lot of autistic people are taught from a young age not to show their stims or be themselves. Even though I’ve been taught that way I am making a conscious effort to let it go. Makes life more fun.
So if you see me out running feel free to give me a high five or let me live my Rocky fantasy and through me an orange … I don’t have oranges often so you could throw a banana 🤷♀️ even better maybe some grapes? 😅
I will share some more about my journey as a carer among other things this week.
Much love
Skye ❤️
Being a Carer
Self Discovery
I want to talk about the self-discovery journey that’s unfolded alongside my daughter’s diagnosis and the support she’s needed. Over the past five years especially, I’ve learned so much about my own brain and neurotype. Seeing so much of myself in my daughter (how she exists in the world, how she copes and regulates), talking to professionals and doing research has helped me explore my own neurodivergence.
Learning that Autism is genetic and mostly passed down through Autistic parents really made me reflect on my own life. After years of therapy and conversations with professionals, I’m 100% certain I have OCD and ADHD. But things get a little muddy because I’ve also been diagnosed with C-PTSD. It’s hard to know whether my brain has always been this way or if some of it was shaped by trauma.
I’d love to pursue a formal diagnosis one day, just to understand myself better, but the cost is ridiculous, and right now it’s not a priority. The C-PTSD diagnosis is the only thing that holds me back from identifying as Autistic. Otherwise, I’d have no doubt. So for now, I use the Neurodivergent umbrella. I know I’m not neurotypical. I know what I struggle with. I know I mask, and have masked,for a very long time, I know when I need to regulate and how to do that for myself in most instances. Knowing all this has allowed me to prepare better for situations for myself and in turn for my family as well.
As I continue therapy and work through my PTSD, I’m confident the picture will become clearer. And hopefully, if the cost of living (worst term ever!don’t get me started) steadies or drops, I’ll be able to get a proper diagnosis. I think it would help me support my kiddo even more.
I could list a million and one things about my brain and life that paint the picture, but that’s not the point of this post. I wanted to share a glimpse of my own ongoing journey to show that I’m not hiding behind the “concerned parent” role or speaking only from my child’s experience. I’m trying to be the voice I needed when I was young, offering the respect I deserved, instead of being made to feel wrong, othered, or discarded.
Maybe I am the concerned parent. But that includes being the parent of my inner child.
Let's talk about school...part two
Let’s talk about school … part one
Not long after our child was diagnosed, we wanted to get a head start on the school process. We went to the local school for help with enrolment and, hopefully, support in accessing a specialty school if needed, preferably an Aspect school. Being new parents on-top of navigating COVID restrictions, with Ri working as an essential worker and kiddo and I unable to leave the house, we had little energy for deep research. Going straight to the school felt like the best option.
We were transparent about our goals and what we wanted. They were lovely, polite and seemingly helpful.
“Don’t worry, you’re doing the right thing. Contact us again in six months.”
So we did.
Six months later:
“Don’t worry, contact us next year.”
We followed that instruction too.
January rolls around (the year before kindergarten) and they tell us:
“You’re still too early. We’ll contact you. DON’T. WORRY. ABOUT. IT.”
All said with a smile and a caring voice.
During this time, we tried pre-school (where Ri worked), and the sheer terror and pain it caused kiddo was heartbreaking. She would look me right in the eye, which was rare for her, pleading, crying, shaking, and shortly after, kicking and screaming.
“Ta pre school, ta pre school.”
(“Ta” was, and still can be, her word for ‘No.’)
This wasn’t just a child not wanting to go to school. This was terror. Real panic. We thought it was something we needed to push through, that things would settle once she got used to it. They never did. We pulled her out.
Then, the year before primary school was to start, she was a bit older and with support from our OT, we tried pre-school again. Same thing happened. We gritted our teeth, thinking, If she’s going to go to school, this has to happen. But soon, even non-preschool days were just as hard as preschool days. Brushing hair and getting dressed became associated with preschool. Meltdowns at the mention of getting dressed or putting on shoes. Fear-filled screams as she ran up the hallway, hurt herself, hurt me. All because these things were now associated with preschool.
Eventually, her attendance dropped from 2–3 days a week to one day a week, then one day a fortnight… and finally to one day every 2–3 months. Even then, she would still panic at the mention of preschool, walking in its direction, or hearing her educators’ names. Ri, working at that preschool at the time, had to change out of their uniform before kiddo saw it and hide the shirts from her.
These reactions (among other things) helped us recognise she has a P.D.A. profile, which I’ll talk more about in the future.
Then we got a phone call from the primary school…
Our Journey Begins (Sort Of)
This isn’t the very beginning of our journey, but it’s where I want to start. Our introduction into the system, and how autistic folks are perceived by the public.
Our kiddo was diagnosed at three. We’d been discussing it for a while. My partner wanted to pursue an early diagnosis, but I pushed back. I wasn’t ready to put a label on a two-year-old or put her through unneeded stress while she was so little. Eventually, I raised our concerns with my therapist who said he knew the best Occupational Therapist and put me in contact with her. He was right. Tash isn’t just the greatest occupational therapist on the planet, she’s one of the best humans I’ve ever met.
Ri called Tash, and she told us we’d need a formal diagnosis to access NDIS funding and begin therapy. This was peak COVID lockdown and even though Tash wasn’t getting paid she helped us every step of the way. We booked the paediatrician and waited months. When the day finally came, only one parent was allowed in the appointment thanks to Covid restrictions . We agreed Ri should go as they had concerns, rightfully so, that if I went and the doctor was disrespectful, I’d probably give him a piece of my mind and walk out without the little piece of paper we needed.
And little it was! He wrote one sentence that our child is autistic. That was the entire report. Pathetic, but enough to unlock support and begin OT.
What sticks with me most is the doctor’s reaction. He expected grief. Tears. Some kind of breakdown. Instead, Ri smiled and said, “Yeah, we already know. It’s not a problem.”
Nothing about how I parented changed that day. It still hasn’t. I treat my kiddo as a human in collaboration with me, she is not someone to be moulded, scolded, or pulled into line. She didn’t ask to be here. So I’ll do everything I can to make her ride as smooth as possible while I’m with her.
The doctor expected pain when he gave us the news. We felt relief. We had a direction. But if I’d known then how the system and the world treat people like my daughter…
maybe I would have cried.
