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.
“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.
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 →
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.
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 →
Truthfully we have fun, our philosophy is to remember the highs and try and forget the lows. This choice makes every time we go outside a memorable day in a fantastically good way.
My ASD Princess 
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