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 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”
Last week I had a daughter with autism (level 2) this week I have a daughter with a suite of disabilities that are fighting for a front row seat, in her every day. A child that I thought saw the world through the single lens of autism, now viewing life through a multiple lenses mixing anxieties, depression, and social phobias blurring her reality and messing with what we thought was her normal.
So I am hurting because my daughter hurts, but I'm also angry because my daughter hurts. When your daughter has only been giving half the diagnosis, it means we've just been treating a symptom, not the cause.
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.
We are bound for a sea change. After four months apart we are finally back together and in one place (with the exception of the oldest who is travelling) The family has packed its bags and left our city home... Continue Reading →
Although the cost of academia was a reduction in supports; this was disastrous for our princess. The progress of the first semester was lost, the wins on her report card forgotten, but more disastrously the want to engage and even attend school has been lost.
It's been a while between drinks, but here we go my latest instalment.
After seven days in the hospital, one month at home and numerous medical appointment I'm on the mend. But it's taken its toll on my princess.
This blog forms an update of the last 90days, a crazy 90 days of learnings, frustrations, healings and for my princess a time of much-needed pushing.
Pre-diagnosis a few year's ago we needed to make a decision. Do we go on waiting lists, accept the initial diagnosis and carry on, or do we go "private"
We learnt some hard life lessons these past seven days. Brushing my teeth feels gross but if I don't I lose them. Misjudge somersaults in the pool messes with your head (literally). Friends don't stay friends forever when your ten... Continue Reading →
My ASD Princess 
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