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.
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;
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.