Alive and Content

Hello world. i am still alive at  32 years old after nearly dyingfrom pneumonia october 2022. I am thankful my wonderful sister flew over to see me in ice and seeing her revived my hope that i will get better and that her bossiness would get me out of hospital. thankful to queen elizabeth hospital staff for keeping me alive even though i was not the easiest patient and probably the younger and handsomer of the patients they usually see

i also live away from mum and dad in nearly my own place which has been a long battle to get the funding and help i needed but finally finding my feet after moving many times in a few months. i look forward to have my own place and have it truly my home. in the meantime i am glad to be heard and be able to decorate my room and have my things in mikes house. thanks mia for my new star wars poster and my cute talented niece moriah for building my star wars lego set.

i think it will be happier days ahead. good to have a good team of staff around me and know that i am loved by my family near and far. new goals to get into running competitions. and diving into some volunteering with meals on wheels good to contribute to society instead of just making everything just about me. i think it would be nice to help other people practically not always through the glitzy limelight of the stage in advocacy but also just acts of service in the everi have learnt to be content in being alive and healthy and loved and not get my worth and drive to live through my eloquence of typing freely as wonderful it is when it happens finally when mia is here next to me. life goes on and i can survive and thrive even without typing my thoughts exactly as i think them. glad people know i can and want to learn how to help me type and i just need to be patient with the process

thanks for reading whoever you are. hope this blog post will encourage you today.

[Typing time: 35mins]

The Autistic Kid Strikes Back

I am typing with Adam today with blogger software. I dont like it very much as the words are small. Adam just fixed it. I am happy now. I need to get things off my chest. I being in the middle of a bad fidget sleep need extra support to do the most easy tasks. I need help toileting, the shower and eating. I am the fidget king. I used to freeze all the time. Now I can't stop my body moving. The worst fidget is my left hand. It is the pits. I can't stop it playing with a whole pile of things like buttons, sleeves, threads, draw strings and my food. I want to be a good eater but my left hand ruins everything. I want it cut off sometimes. I will bare it. I am determined to type every week. Adam just challenged me to blog every Wednesday. I am keen  to try. I want more. I am not living to my potential. I need more purpose. I am a great writer and need to express myself forever. I am sleep deprived, food choice deprived and purpose deprived. The workers mean well but can't really help me to make my own decisions. I want to make my own choices. I need more support to help me communicate. Mum is the main problem. Her english is bad. she doesn't understand the workers  and needs a translator. I am not blaming Mum she is incredible, she just cant help me communicate. I want my family together. I need them to get my back on this. I wish Mum and Dad were still together. They are great. I miss Dad a lot. He only visits from time to time. He is getting old and I dont want him to die without me telling him i love him.

Typing time 37 minutes.

I am very excited about my future.

I have a great support team. I am very lucky to have the very best people working with me. I am great. I like my life today. I am going on holiday to New Zealand. To see my Sister. I can't believe it is happening. I am popping with great thoughts. I am blessed. The end.

15 minutes typing time.

The blog

The blog.

The last time I wrote a blog was many moons ago. The facilitator was my sister Mia. Today my worker Adam is helping me to write this. Yesterday. Was an important moment. In my life. I realised I need to. Write down. My thoughts. To tell the world how I feel about things. The process. Is very important to me today to communicate my hopes and dreams for the future.

Break.

from an autistic guy who is trapped

Sad to say that my life really not amazing. Its hard to admit that on sad public platform that I am not ok. I type with great difficulty getting my body TOGETHER to even say anything worthwhile is difficult. I am starting to think that my freezing my obsessions with touching my clothes and sensory, overload is just me now. Its not really the bold one eyed pirate plundering the seven seas of autism anymore. I am just drowning in this sea where I talk to voices in my head because fc dreadful lifesaver to being human is now a cursed anchor that chains me to wretched dependent lonely existence. I hate being unable to talk or type by myself. This is so crap and makes me so sick in my heart and so I resume my sad fake smiles. 

Typing time: [55mins]

Big events and ahoy [49min]

Hello everyone.

I am very sorry to disappear from the blog for so long. I am still alive and well and now have a beard to match my moustache. It also features some auburn hairs which must mean I'm related to someone Scottish. Many things big things have happened since I last blogged.

My amazing sister got married earlier this year and I had the privilege to represent my family with a speech. She has and still is a huge blessing to me and now has joined forces with my brother in law a hilarious crazy guy who is nicknamed dragon beard for good reasons. He inspired me to grow my own and I'm pleased to defy my Asian baby face genetics.

The other big event is me moving out of home for the long term and hopefully for good. I also have a housemate. He is an unusually optimistic and cheery guy who parties til late and hates rice. He also has cerebral palsy and a law degree. My biggest or most prominent irritant about him is that he can talk enough to get what he wants and so support workers tend to chat to him more than me and decide what we do when we hang out together. I refuse to go to the movies again with him since he decided to watch ted 2 instead of my pick of minions. My eyes are scarred by the experience.

Think a miracle happened when Matt came back as my key support worker when I first moved out from bunking in David's living room. But when my new housemate moved in he disappeared again. It saddened me a lot but I was grateful it happened. I have also cycled through some dud support workers who forget that I employ them. Let's maintain that power balance. I am not scared to fire staff who intimidate or take short cuts. I want to be supported to live my life not babysat or plonked in front of mindless TV or YouTube.

Right now I'm in Townsville at Jupiters hotel getting ready to present my story of school and beyond at Centacare think prepare plan conference. Molly kindly nominated me last year so here I am with Mia. Loved the buffet dinner and breakfast. I'm so stuffed.

Until next time,
The bold one eyed pirate

The strange lesson I have learnt

Josh uni that is a sole drive for a long time. The need to prove my worth and intelligence meant everything. It scared me when the people I needed most left but I am starting to understand that they need to go after their dreams too. The good ones tend to come back anyway. 

That’s a strange lesson to learn. The stronger and independent I became the less I needed to rely on others to be happy. But what came first the strength or the abandonment? Think the only way you can learn to fly is when you are pushed off the edge. You can choose to either soar or sink into murky sadness or anger.

I think it became easier to be free when I looked to try out new things which relied on my physical strength and skills rather than typed eloquence. I am more than the words I type, the weights I lift, the walls I climb and the people who speak intelligently to me. 

It’s a relief that I should think the only thing that matter cannot be measured or seen. I matter to God and to my family and real friends just the way I am. I am thankful to be alive and well. I am thankful to be given many opportunities to be myself and do what I love to do. 

So what are you grateful for today? What has your pushed off the cliff experience been like?

[Typing time: 45mins]

The puddle in my brain.

The puddle in my brain. 

Good morning sunshine. Can you make the puddle in my brain dry up? The storm of frustration, loneliness and disappointment has made my thoughts soggy and muddy. Help my muddled mind to look behind the dreary wet landscape and see something beautiful and alive. My words are my only resort to connecting to people in a true way. Without them I am not a human. 

I am trapped in a body that lets me down. I am thinking and I am always thinking with so much to say. But a thousand moments of opportunities pass and I resign to silence. I need bossiness, empowering bossiness and stubbornness from people to knock down my dungeon of my autism, let the sun in and dry up the puddles in my mind. The mediocre assume my silence as compliance and approval when it is imprisonment. 

Help me escape please just one word at a time. 

The puddle in my brain

The puddle in my brain.

Good morning sunshine. Can you make the puddle in my brain dry up? The storm of frustration, loneliness and disappointment has made my thoughts soggy and muddy. Help my muddled mind to look behind the dreary wet landscape and see something beautiful and alive.

My words are my only resort to connecting to people in a true way. Without them I am not human. I am trapped in a body that lets me down, I am thinking and I am always thinking with so much to say. But a thousand moments of opportunities pass and I resign to silence.

I need bossiness, empowering bossiness and stubbornness from people to knock down my dungeon of  my autism, let the sun in and dry up the puddles in my mind. The mediocre assume my silence as compliance and approval when it is imprisonment.

Help me escape please just one word at a time.

[Typing time: 18 minutes]

Movember yes to the mo for men's health

Hello buccaneers

Want to see how long the Asian mo can grow? Please support me and the Mamre moustachioed Movember men in the epic facial hair growth. Check out my facebook and mo pages for updates.

http://mobro.co/boldoneeyedpirate
Facebook.com/theboldoneeyedpirate

Cheers
The bold one eyed pirate

Ditched and raw.

Hi everyone,

If time could be filtered through the sieve of uni, presentations and unexpected changes, I would be left with the luxury of blogging, Facebook and writing. I have been upset and confused by how easily people leave and fragile my true voice is when the very few people I trust move on to bigger and better greater aspirations.

Kind videos of silliness and repetition soothes and numbs the hurt of feeling ditched and fear of disappearing into a ghost that is mute, expressionless and unhuman. Up is the way to go but the journey is hard. Letting in new people is like unbolting a thousand complicated locks on a titanium bullet proof door on my well guarded heart and mind.

I find my head exploding with so much to say but I am only free for too few sweet moments. One liners are often my staple and full expression like what you see now is only an exquisite short lived treat.

I must dash now. Again and again.

Bye.

Yes The Pain of Really FC.

The sad frightening reminder of the really feeling of being completely alone and trapped in a stupid body creeps into my thoughts and emotions like a nightmare of baseballs being thrown at you by bodybuilders. It's painful, bruising and long lasting.

Friends have a use by date. Support workers no matter how awesome will move on. People get busy and the thing is you will be forgotten like yesterday's newspaper stories.

Help with university is a challenge with new people unfamiliar with my version of FC. The real true me doesn't make it to daylight in the awkward tango of two left feet, forging of fragile trust ahead of the battles of another day on campus. Gets frustrating but I'm blessed with people who go the extra miles and think that I am actually pretty clever and witty even though I'm reduced to single word replies and rating scales.

Yes it is a new voyage and I'm about to be a seasoned pirate who faced the choppy seas and conquered.

[Typing time: 25mins]

Greatest worry, defiant arr.

The greatest worry is losing a dream so toiled for and  so really sought after. I am at risk of not being able to continue studying my dream degree because the funding I need will run out next week. my poor tired overstressed parents are  fighting hard for me to find support for me. I am finding it hard to concentrate and throw myself in my studies because it may suddenly end and my slow laborious letter by letter work may count for nothing.

Being able to present in front of health professionals and students with QCIDD (Queensland Centre of Developmental and Intellectual Disability) is exhilarating and I am filled with hope that as I reflect on my journey God has graciously put kind and generous people in my life to help me through and open doors for me. I see myself as a young man with purpose and worth.

I am proud to be a uni student but I fear it wont be the case soon. But I fight again just like I have my whole life once I had the realisation that I am not what people label me as or what they think I am capable of. I think it is too easy to believe you won't make it and that you are only worth as much as what people think.

That is the easy thing to think, but I am bold, one-eyed for cameras and a stubborn plundering pirate who is claiming his right to education, freedom and antidiscrimination. hollering out a triumphant "arrr".

[Typing time: 27 mins]

Seek to understand.

Thinking that some people are awful. I think the greatest weapon against ignorance, bullying and misinformation and general meaness is civilised and witty come backs and facts.

Thank you to those who think these are my own words and thoughts. because if they were not then I am the best puppet who would slave for hours at a time at my iPad typing the most random perspectives and thoughts that belonged to someone else trying to fake the world just for fun. 

It angers and disappoints me that people can be so harsh because they do not understand and make such destructive assumptions. If they actually did more open minded research and investigated the stories of real people who have used facilitated communication as a stepping stone to completely independent no touch communication then maybe for some people the controversy will end.

Thinking that surprisingly enough science cannot always explain things. But it does not mean that that will always be the case. The break between unknown and known is time, understanding and exploration of different methods to capture adequately and explain objectively a new phenomenon. Because the closed minded skeptic was the one who actively opposed the new scientific findings or natural phenomena of social or linguistic or cultural trends and was opposed to develop understanding. 

Soon you'll be thinking that your views are the only right one because the alternatives frighten and challenge you to change your attitude and actions. I think the most challenging debates are around people who are different to you. And the differences could be skin colour determining your value and opportunities in society, your ethnicity and education determining your level of prosperity, your method of communication determining your ability to exist as an actual human being or the type of disability determining your level of funding and acceptance from the general public. 

Disability especially is a touchy topic. If you don't have that type of disability you will not ever fully understand what it is like even if you are a researcher, casual observer, support worker or even a family member. If you had the disability but was raised differently and had different opportunities and challenges then you cannot fully understand either. Why? Because everyone experiences the out-workings of their disability differently. but it does not mean you should not seek to understand. Especially those who communicate differently.  Just like those who signs to communicate or those who struggle to direct their movements purposefully such as those with cerebral palsy to speak or point - can't such acceptance be afforded to those with other neurological and sensory differences? 

Yes I hope your answer will be a yes even when you are in a hurry, in an awkward situation or just plain tired. An understanding soul is hard to find but I hope to be pleasantly surprised and everyone else who is like me yet with their own stories to share.

[Typing time: 1 hour 21 mins]

Time to reflect

Think intro. The thinker in a blender of guessing and your daily worry of every thing possibly going wrong and whether you will survive the weight of expectations. I have seated the fight of proving myself to the back of the car and take pleasure in the smaller uncomplicated things in life like maintaining decent moustache, wearing funky clothing and smiley face at funny conversations I overhear. I think it's been a time of discovering that there is a time for everything and taking time to be incognito is not laziness but a wise decision. Just a birthday coming ahead. Some make a big deal out of it saying its a thoughtful celebration of a person becoming an adult or an excuse to party hard and drop good wishes on the ageing person.

Hello josh you are getting older and I hope more good looking too as you hit 21. Maybe time to do some party planning and come out of incognito mode. Prefer coke to beer but willing to be convinced if there is good trade offs.  

In there from griffith it's nearly o week. Pretty excited and keen to exercise flabby brain and experience the campus life bar tipsy nights. Yes I am a proud nerd and strange too but I like being different. Been like that my whole life. 

Is yes about timing and supper?

Thats a funny idea. The idea of waiting. You can wait noisily and angrily or quietly and thoughtfully. You could even find a supper in the late agonising nights a temporary reprieve from waiting. That is the strangest thing about waiting. The frightful dullness and uncertainty of whether you can endure. You can certainly freshly brew some hot chocolate to dutifully escape but you still must return to the waiting room of your mind.

Your freeing thoughts carry you off to distant mirages of independence, acceptance and freedom but suddenly the magic carpet stiffens into an old bath mat and you free fall into the desert of reality. So you trudge along once again and hope someone can walk alongside you in the weary journey.

Some days you discover an oasis and you kneel beside cool waters to drink deeply and then admire the scenery before you and how far you have come. And the friends who helped you endure.

It has been one of those days. QTAC offered the weary pirate his first preference - Bachelor of Journalism at Griffith Uni. Dreams do come true and that is a cliche well used and very true.

Thank you my good and patient friends who have journeyed with the moustached Asian pirate of the Australasian seas. You are my heroes worthy of really very audacious spoiling, happiness and fine beers.

From the bold one-eyed pirate

[Typing time: 39 mins]

The seeing and heartiness of heated drivers

The biggest failure in life is not the finer details of a failed assignment or to endure the grinding toil of waiting for a better things to happen or fronting an appearance all is well because I smile on cue. The greatest enemy is when I don't care anymore about being someone worth listening to and I let my autism entice me into familiar but dreaded isolation and into the world of repeats of old movie lines that makes me feel in control.

I am not a nervous bag of everything my body dictates my slow movements, my inaccurate movement, my great chins of centres on nothing useful nothing productive nothing nothing nothing except the repeats of movie lines looping. I am the thief of my time and at the whim of the touch that sets my body and brain in synch and I am for a generous but fleeting moment free to let my real thoughts trickle out one letter at a time. The jealous side of me rises when I can hear people write and speak so freely so wastefully and so quickly. Everything if I could give and more to type and speak my mind anytime I chose to and not be dependent on someone to help me. I am desolate without Mia and Matt and it frightens me that I can lose my voice and disappear into insanity inducing loneliness and despairing blackness.

It is going to be hard and journey requires friends. I find this so hard. Lip service acquaintances who ask me how I am but don't stick around to know how I really a m frustrates me yet it is often this or nothing at all. I don't think people really want to know because they wouldn't know what to say or how to continue waiting for me to type.

Why do people just want to have good fast entertaining chats and not be accommodating? I am thankful for the rare gems who do want to be a true friend. I hope this dreadfully sad post can identify with a person who like me drives with an unreliable automobile of a body but still wants to reach their destination with some true friends.

[Typing time: 57mins]

The fundamental greatness of very laborious work

Big goals require sacrifice. To say yes to the pursuit of journalism has meant no to other things. Sadly this has meant the neglect of the blog. Fast moving lives and assignment deadlines meant  forgoing time to reflect, exercise the dreamer side and type for sake of enjoyment. It has been a steep thrilling learning curve starting uni this year and not letting my autism be a bugbear. I am proud to say that I am battling through the head scratching mire of research and essays without asking for extensions. 

My greatest thank you to my tireless ingenious dedicated team who support me. You are my heroes. You enable me to be the bold one eyed pirate, to sail to uncharted waters and fight for freedom of speech (in whatever form) and to defend those who have yet to find their voice.  

I am not alone or a rare anomaly. Fight, my friends and the day will come where people who are voiceless will roar in their styles and will be heard loud and clear.

[typing time: 29min]

Leeches and cloaks

You have no idea what it is like to be me. But that is ok because I don't know what it is like to be you. I can hazard an educated guess that if you are reading this you are either like me but yet not exactly like me or you are different, completely and profoundly different and you really are trying to understand what it is like to have autism woven into your DNA and cloak you in its deception that isolation is bliss and silence is golden. Hope the future is not bleak,  monotonous and hopeless. Sad to be trapped and endurance with optimism is sometimes draining and I wonder how life will unravel like wool from a yarn. Nobody likes sadness or hearing about it. It can be more deadly than knife stabbings. It is like  thousand leeches all over you until all the blood is drained out. Nobody wants to be near you in case you throw the leeches at them as you try to tear them off your skin. You want to scream, to punch and run but you are trapped by a body that does not care that you are fighting for your life.  Autism attracts ravenous leeches. Anyone offering salt?

Spacious Rumblings

Blog time is spacious time. The journey of writing and flexing of hounding muscles and sheer willpower in the maze of academic rigour has been consuming all energy. Yes blogging is a space where I can cast off all restraint and just let my finger waffle on.

Happy goes a soul who is content in who they are in what they have. You may find it hard to settle in rhythm of cushioned peace in the din of chaos while nutting out the world's problems. Crazier things could collide like obsessive straightening of runaway threads on well loved clothes, gawking by unkindly teenagers and the realisation that there are many annoying things one cannot change.

Things that could make things easier to bear are the murmurs of melodic hope and inspiration rippling austerity. A reflection on how far you have come can spur oneself to continue to the next goal how ever impossible it may be.

From the pirate of thoughtful rumblings and funny snapshots,
The bold one-eyed pirate.

[Typing time: 32mins]