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”
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;
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.
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 →
I am starting to believe that we may never truly adjust to this diagnosis. However, we now have a far better understanding of Jenna, the fluid nature of ADS. We have learned that autism is an ever changing lifelong diagnosis and sometimes a challenge for us all.
It's easy to teach, discipline and model the correct and expected behavior for our own family. Although we have been really taken a hit this past few weeks from others (mostly complete strangers.)
Much of our spare time is spent assisting her siblings understand the complexities of autism and trying to differentiate behaviors, meltdowns and 'just being a naughty kid.' We have had some little wins but all the 4 children have a point.
At times it's not fair!
Getting it wrong for the past 5 years I asked myself these questions:
Did that lesson my abilities as a Dad?
I missed the signs for Jen, what else have I missed?
What did I do wrong?
Why did I miss all the signals?
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