“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.
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.
Upon reflection, we have concluded that this year has been the most tumultuous and difficult for our princess and as such for us. We had high hopes for her first year of high school, a timetabled and predictable space, others in her class with similar struggles and specialists that could walk alongside her.
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 →
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"
Daddy wants to write you a letter and say thank you. Thank you for asking questions Thank you for adapting and embracing your autism diagnosis Thank you for being proud of who you are Thank you for teaching me to... Continue Reading →
Next became a bigger problem... the constant in Jenna's life the past 6 years has been a school. School, for the most part, has been predictable, structured and problem free. In what seemed overnight we went from going to school daily, to non-attendance
To say "Its been a tough holiday period for the princess" would be an understatement.The normality of school, bedtime, packed lunches and her gymnastic lessons create a rhythmic stability for her
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.)
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?
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.
My ASD Princess 
Recent Comments