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.
We are for the first time trying to understand the complexities of the comorbidity of our princesses mental health diagnosis and autism.
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.
January was a tough month in the household. The family moving in together after six months apart was taxing for all. Jenna's three siblings found life difficult to adjust to 24/7 Jenna. In turn, Jenna was far more accustomed to... Continue Reading →
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 →
What a whirlwind of a month.... We have started yet another therapy journey for Jenna, and its been a fantastic eye opener for us all. The next chapter has unlocked some permission for our princess, and we have seen an... Continue Reading →
My ASD Princess 
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