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]