Living with autism

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GranFormaggi said:
My heartfelt best wishes on Father's Day
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Thanks mate. It's been a Father's Day full of roller-coaster emotions - I, and more particularly my beautiful wife, are slowly coming to the realisation that our boy won't be coming home. After having him in our home for almost 2 decades, that's tough to deal with, but we know it's for the best in the long term.
 

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JimmyBeerCans said:
How is ya lad going philreich ?
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He's gradually getting used to his new environment. The hospital has adjusted his medication, and he's now as gentle as a lamb when we visit. But it's such a huge weight off our shoulders, not having to look after him - my wife suddenly looks (and feels) 10 years younger!!!
Far Kern said:
Good onya philreich

I hope that you know how much I admire what you’ve done and that you can talk any time.
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Thanks FK - appreciate it.
 
Update: not good news, I'm afraid. We found out this week that Brian has started attacking hospital staff, so he has now had a guard assigned to him, to protect the staff. Yesterday afternoon, we had what amounted to a phone court case - a 3 way conversation between my wife & I, a doctor from Lyell McEwin, and SACAT [South Australian Civil Administration Tribunal]. The hospital was seeking - and was granted additional powers to use reasonable force against Brian where necessary, to assist them in treating him.

The upside to this is that it will surely fast track his application for permanent accommodation. Ah, the joys of parenthood...…………...
 
Sorry to hijack this thread.

Im an adult that was diagnosed with Autism about a year ago. Iv had so much trouble through my life with people treating me badly and not knowing why. My diagnosis has helped me to understand things more but it has uncovered a massive deficiency in our health care system.

There is no support for adults with autism. None.

Iv spoken to so many doctors and psychologists but not a single one even inches me closer to getting the support I need.

Does anyone know someone that helps adults with autism? I would appreciate any insights anyone has as well.

Its been tough finding support.

Thanks
 
Rendaw said:
Sorry to hijack this thread.

Im an adult that was diagnosed with Autism about a year ago. Iv had so much trouble through my life with people treating me badly and not knowing why. My diagnosis has helped me to understand things more but it has uncovered a massive deficiency in our health care system.

There is no support for adults with autism. None.

Iv spoken to so many doctors and psychologists but not a single one even inches me closer to getting the support I need.

Does anyone know someone that helps adults with autism? I would appreciate any insights anyone has as well.

Its been tough finding support.

Thanks
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Hi mate, not really my area of expertise but maybe some of the resources here would be of some use to you? https://www.autismawareness.com.au/life-stages/adulthood/

If you're struggling to find work please feel free to put in an application for the Port recruiting job, I'd be thrilled if our recruiters end up making the same picks as you made in the Phantom.
 
Schulzenfest said:
Hi mate, not really my area of expertise but maybe some of the resources here would be of some use to you? https://www.autismawareness.com.au/life-stages/adulthood/

If you're struggling to find work please feel free to put in an application for the Port recruiting job, I'd be thrilled if our recruiters end up making the same picks as you made in the Phantom.
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Thanks ill check out the link and maybe give the club a call. Haha
 
Schulzenfest said:
Hi mate, not really my area of expertise but maybe some of the resources here would be of some use to you? https://www.autismawareness.com.au/life-stages/adulthood/

If you're struggling to find work please feel free to put in an application for the Port recruiting job, I'd be thrilled if our recruiters end up making the same picks as you made in the Phantom.
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Hi mate - I haven't checked this thread for a few weeks, and I've just read your story. Another avenue that we've found really helpful is Autism SA: hopefully they can give you some assistance as well.
 
Brian is still in hospital (yesterday was day 100), and may be there for some time yet. However the good news is that NDIS is funding a new house for him, plus they'll pay his weekly rent in full - he'll only be responsible for paying for his food and quarterly bills. The downside is that the house that's currently on the site needs to be demolished before building can start. But they've assured us that he'll be moving in within 6 months: hopefully a lot less than that. I'm hopeful that he'll be settled by the time Port smashes Gold Coast in round 1.

In the meantime, we have to get him through the next few months in the world's most boring hospital..............
 

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Just picking up on this thread philreich, sounds like you've got a tough ride going on. Hope the support system holds up for you and there's some relief in sight soon.
 
bomberclifford said:
Just picking up on this thread philreich, sounds like you've got a tough ride going on. Hope the support system holds up for you and there's some relief in sight soon.
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Thanks Bomber - that wife of mine is one tough lady. She's copped a lot, but she's bouncing back really well. We're now able to make plans we could only dream about a few months ago, because we know our boy will be cared for around the clock. So 2020 is looking a lot brighter. All we need now is a successful Port Adelaide, and life won't be too bad at all :).
 
philreich said:
Brian is still in hospital (yesterday was day 100), and may be there for some time yet. However the good news is that NDIS is funding a new house for him, plus they'll pay his weekly rent in full - he'll only be responsible for paying for his food and quarterly bills. The downside is that the house that's currently on the site needs to be demolished before building can start. But they've assured us that he'll be moving in within 6 months: hopefully a lot less than that. I'm hopeful that he'll be settled by the time Port smashes Gold Coast in round 1.

In the meantime, we have to get him through the next few months in the world's most boring hospital..............
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You and your wife's life has certainly been a rollercoaster for a few years now and especially frenetic recently. It is good to read you should be getting the help you need and deserve.

It is so tough for families in this situation, especially where challenging behaviours exist. It is not always a simple matter to get help within the limitations of the disability sector, or more to the point its funding.

Our son is rolling into his mid 20s (where did those years go, it seems like only yesterday I was up at 1am with a wide awake month old baby rewatching the 95 grand final against Centrals) and he is settled in a job in cyber security and in a stable relationship.

We didn't have the challenges you have faced Phil, although there were battles with some schools, but it is relieving and encouraging to see your child progressing in his life.
 
Ford Fairlane said:
You and your wife's life has certainly been a rollercoaster for a few years now and especially frenetic recently. It is good to read you should be getting the help you need and deserve.

It is so tough for families in this situation, especially where challenging behaviours exist. It is not always a simple matter to get help within the limitations of the disability sector, or more to the point its funding.

Our son is rolling into his mid 20s (where did those years go, it seems like only yesterday I was up at 1am with a wide awake month old baby rewatching the 95 grand final against Centrals) and he is settled in a job in cyber security and in a stable relationship.

We didn't have the challenges you have faced Phil, although there were battles with some schools, but it is relieving and encouraging to see your child progressing in his life.
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Ford - it's been incredible being able to relax at night, rather than being on edge all the time. The downside is that my wife is a very good scrabble player, and over the last few months I've been on the wrong end of a few hidings!!!
 
Ford Fairlane said:
philreich watch this National Press Club speech. It is so good.

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Just finished watching this. It's pretty inspiring stuff: thanks for posting, Ford.

On a personal note, our boy has now been in his own house for just over 2 years, and he's loving life. Thanks to his medication now being under control, the anger that used to be part of his daily life is now long gone, so it's been a real win-win for everyone concerned. He also has around the clock carers who love him and really look after him - we couldn't be happier.
 
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That's great to hear philreich . There's nothing you want more as a parent as the best for your child, whatever their age.

Here is the link to the talk for anyone else that would like to watch. While Em is focused on ADHD as this is her diagnosis, she relates to all neurodivergent people.

 
Ford Fairlane said:
That's great to hear philreich. There's nothing you want more as a parent as the best for your child, whatever their age.

Here is the link to the talk for anyone else that would like to watch. While Em is focused on ADHD as this is her diagnosis, she relates to all neurodivergent people.

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As someone with undiagnosed (but 99% certain) Aspergers I watched Em's press club speech live and was deeply moved and grateful for it.

How did I determine my Aspergers you ask, well if you google "You can't ask that" and "Autism" you'll find the episode that is relevant.
It had never even crossed my mind that I was Autistic until I watched this, and then it was like a light switched on and 50+ years of being different all clicked at once. It felt like a relief and still does.

I've been very fortunate that I have worked or studied my entire life.
I'm currently working part time making video games and just yesterday applied for a new fulltime game development position for when my current contract expires.

I consider my autism a superpower these days, you have to be positive about these things.

Will I ever get a formal diagnosis, I'm not sure. The resources available to do such things are very limited, and at my age I think that time should be spent on others, not on this old fart.

Anyway, I won't be mentioning this anywhere but in this thread and I would appreciate it if you don't either.
 
Reading this thread makes you appreciate others more

We will all encounter major challenges in our lives and whilst you're in a sweet spot, take the time to help others who aren't having it so easy. Simple things like taking around a meal can be very welcomed gesture, when time and energy are not in abundance.
 
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During the week, I heard something on the radio that made me bloody angry. Three oxygen thieves in Sydney were arrested and charged with NDIS fraud to the value of $3.2 million!!! They somehow managed to make fake invoices, and they made people think they were genuine. It was motivated by pure greed, and it makes my blood boil, because those of us who have legitimate claims to receive NDIS money are disadvantaged by leeches like this. Hopefully the authorities throw away the key.
 
Philreich, glad to hear that things are working out for Brian - as a parent of a daughter with a mild disability I know some of the issues you have to deal with. Getting medications right are vital to helping communicate with the kids.
Our daughter suffers epilepsy and has an acquired brain injury due to a 30min seizure she had in Women’s & Children’s emergency when she was 8 mths old - Doctor thought it was a stroke. Various medications were prescribed to reduce seizures but they had the side effect of slowing her development. There was one medication (red liquid) which we called Jungle Juice - wild tantrums, throwing things, etc but it stopped the seizures..
Over the years changes in medication helped with her development and reduced the tantrums as she learned to walk, talk and importantly use the toilet (around 6/7 yrs of age), last year she graduated high school.
How is your other son Jason going?? Hope he’s going well.
 
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