I’ve been ‘unwell’ in my current state since 2015/16, so seven years of not understanding the ‘WHY’ about my chronic pain, tremors, and functional neurological disorder. Therefore I needed to focus on one avenue to ensure some kind of normality for myself and my family. I’ve focused on pain management for the past seven years, getting my first pain specialist in 2016. My logic is that with effective pain management, I can live a somewhat normal life, continue working and mask whatever is going on with painkillers.
“I’m sorry about him.”
My wife and I heard this mother say numerous times. We were waiting in line at the shop. The lady’s son had started talking to us and asking us questions. We noticed this made the mother uncomfortable which lead to her making excuses for him, telling him several times to stop interrupting us. The young man was clearly interested in what my wife was purchasing. He turned to me and asked me several questions about what I was holding too. Again, his mother continued to apologise while telling him to stop.
No clue about what Autism is? Neither did we. Until we spoke with Jeramy Hope. He is dedicated to Autism Advocacy and is working hard to bring more awareness on the topic. This episode also has a special ending. Jenna Hope shared with us what to do if you've discovered you have autism.
“I’m not blaming my autism for anything I’m proud that I have autism and it doesn’t matter if I do stuff differently that’s okay, nobody is normal if you think your normal maybe you don’t know what the definition of normal and different mean because if everybody was normal life would be real crappy. God made everybody different for a reason in brace your differences”
I've been learning not to focus on the 30 hours of school she doesn't attend per week or the endless juggling of multiple allied health and medical appointments. Even further the constant seesaw of medication changes, self-harm, overstimulation, fighting and misunderstanding. If this becomes our focus and measure stick, I would feel defeated and fighting a lost battle.
Instead, I've been determined to notice these huge milestones these past months that demonstrates a positive movement forward;
We are for the first time trying to understand the complexities of the comorbidity of our princesses mental health diagnosis and autism.
Upon reflection, we have concluded that this year has been the most tumultuous and difficult for our princess and as such for us. We had high hopes for her first year of high school, a timetabled and predictable space, others in her class with similar struggles and specialists that could walk alongside her.
Our dreams of independence, a life away from mum and dad, a career, family and life long friends seem unattainable, and that's gut-wrenching, painful. A scary future that each day I try and push away refusing to accept and I continue to help her dream, push her farther and again try a new strategy to get through a somewhat typical predictable day.
I have been reflecting on love. Both how my princess shows this and how we ensure she feels and understands love. Like many ASD kids, my princess has trouble showing any affection. As an example, the rarity of hugs is... Continue Reading →
My ASD Princess 
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