Discussion All's well that ends well

[Jabba73]

Lots of good stories in here, thanks all for sharing.

Mrs Jabba and I have had many kids with ASD come into our care over the years, some diagnosed, some in the process of getting a diagnosis. Every single one of these kids present their own challenges and every single one of them brings the kind of joy that keeps us doing what we do.

Unfortunately we have ended one placement due to the kind of unsafe environment philreich described earlier, just wish we had been brave enough to call it earlier before it escalated to dangerous levels ... we know better now. On the flip side, we are still in contact with some of the kids that have moved on to their forever home and take great delight in watching them grow into happy kids in a stable environment that is right for them.

Yet to have two kids with the same triggers/reactions/behaviours. Keeps it interesting at least ...

 

[Jabba73]

Support services are severely underfunded and lacking in trained professionals, especially in rural and remote areas. We are meant to have specialist appointments with every new placement within the first few days including GP, dentist, optometrist, audiologist, OT, pediatrician and for some kids play therapy or psychologist. Getting appointments for some of these is between a 2 and 52 week wait, unacceptable given the challenges these kids already face.

Reckon there is enough money in the NDIS, if you can stop the exploitation of it, it could easily be doubled to help meet the needs of those still yet to gain access to services. Too many people add a couple of zeros to the bill when they know it is NDIS funded, a bit similar to the price of services once the word wedding is mentioned.

The current budget has about $36b for NDIS, only 3 times more than the amount allocated to fossil fuel subsidies for mining companies who then sell our natural resources to overseas countries cheaper than they do in our own marketplace.

Kinda puts our national priorities into perspective.

 

[philreich]

Autism isn't all bad - my other son is also autistic, but not to the extent of our other son. He and I were driving somewhere one night, when out of the blue he says to me, "Dad - what's 10 times 2016?"

I replied, "20160."

I could tell that his mind was ticking over at a million miles an hour: after a few seconds he floored me with, "Oh that's right - that's 64 times 315 isn't it?"

I nearly drove into a light pole!!!

 

[pantskyle]

There's a saying that my wife and I abide by, "If you meet one person with autism, you've met one person with autism." You can't place every autistic person under the one umbrella, because everyone is different.

I used to work with a guy who has a daughter with down syndrome, we used to speak often about our kids as I have two boys with autism and he once told me he'd much rather a child with down syndrome then with autism, reason being at least with down syndrome it's fairly obvious your child has a disability but with autism a lot of the time it isn't and when your kid has a meltdown it just looks like a shitty kid with shitty parents letting it happen.

Sorry to hear how rough it's been for you and your wife, being in the autism family community you hear a lot about kids/families in the same situation, my two are completely different to each other and I've been on the end of a couple of punches but nothing that I've ever felt I was in any real danger.

 

[pantskyle]

It's also worth mentioning how many volunteers some of those organisations have that receive nothing (financially) for the genuinely invaluable assistance they provide to organisations and individuals that need it. One of my mates did years of accounting work for free for an autism support group, and he was one of a number of volunteers there who might have received the occasional free lunch for their time.

Of course, this is left out of the reporting surrounding the NDIS. Much easier to punch down rather than properly investigating what is actually happening beyond a pure numbers standpoint.

My partner works/runs an Autism charity that helps kids with disabilities to learn how to swim and water safety. They are constantly struggling for funds, they'd be dead in the water without volunteers.

 

[Jabba73]

My partner works/runs an Autism charity that helps kids with disabilities to learn how to swim and water safety. They are constantly struggling for funds, they'd be dead in the water without volunteers.

Just bought a Powerball ticket for the second time in my life.

If I win 1st division, will hit you up for details of your partners charity and give them a bit of love for you.

Your partner is an angel.

 

[pantskyle]

Just bought a Powerball ticket for the second time in my life.

If I win 1st division, will hit you up for details of your partners charity and give them a bit of love for you.

Your partner is an angel.

Thanks for reminding me about powerball.

 

[Sun Ra]

Thanks for reminding me about powerball.

I miss your old avatar a lot.

 

[pantskyle]

I used to work with a guy who has a daughter with down syndrome, we used to speak often about our kids as I have two boys with autism and he once told me he'd much rather a child with down syndrome then with autism, reason being at least with down syndrome it's fairly obvious your child has a disability but with autism a lot of the time it isn't and when your kid has a meltdown it just looks like a shitty kid with shitty parents letting it happen.

Sorry to hear how rough it's been for you and your wife, being in the autism family community you hear a lot about kids/families in the same situation, my two are completely different to each other and I've been on the end of a couple of punches but nothing that I've ever felt I was in any real danger.

Getting some sad reacts and want to reiterate the boys have never been violent that it would ever be a concern. Don't want to give the wrong idea. If my son ever actually hurt someone he'd bawl. Very gentle soul.

The other is so incredibly weak not sure a moth would notice.

 

[The Majestic]

One more thing - I heard on the news recently that there's some suggestion that too much money is being poured into the NDIS program. I say this: what price does one place on the wellbeing of those who desperately need the money? I'm not saying it will be, but if NDIS is scaled back, people may be forced to face their difficulties without assistance. Surely nobody wants that.

I hope that they don't mess with the NDIS, I am a member of the NDIS, I do have a learning disability I will be getting tested for autism myself. I have ADHD, and have a few other issues within my brain after an attack a few years back.

I am glad your son is getting some good care, I have been a sole carer for my three siblings who have various disabilities my older brother now has a team of support workers to help him with day to day living even though he lives in a unit next door to me with my other brother.

NDIS has been given me some support workers that have helped me start to get a more active life, even though currently I have a fractured foot. Since my parents died it's been tough with all of our mental health and all. So we're all getting there.

 

[Sun Ra]

I hope that they don't mess with the NDIS, I am a member of the NDIS, I do have a learning disability I will be getting tested for autism myself. I have ADHD, and have a few other issues within my brain after an attack a few years back.

I am glad your son is getting some good care, I have been a sole carer for my three siblings who have various disabilities my older brother now has a team of support workers to help him with day to day living even though he lives in a unit next door to me with my other brother.

NDIS has been given me some support workers that have helped me start to get a more active life, even though currently I have a fractured foot. Since my parents died it's been tough with all of our mental health and all. So we're all getting there.

Much love to you pal.

 

[Jabba73]

Getting some sad reacts and want to reiterate the boys have never been violent that it would ever be a concern. Don't want to give the wrong idea. If my son ever actually hurt someone he'd bawl. Very gentle soul.

The other is so incredibly weak not sure a moth would notice.

Was a sad react to the part about wanting a visible disability so the flogs of the world will judge less harshly.

Seems to be a never ending supply of the snooty variety who believe they do the kid raising thing better than anyone else, with no understanding or empathy for challenging circumstances being faced.

 

[Jabba73]

I hope that they don't mess with the NDIS, I am a member of the NDIS, I do have a learning disability I will be getting tested for autism myself. I have ADHD, and have a few other issues within my brain after an attack a few years back.

I am glad your son is getting some good care, I have been a sole carer for my three siblings who have various disabilities my older brother now has a team of support workers to help him with day to day living even though he lives in a unit next door to me with my other brother.

NDIS has been given me some support workers that have helped me start to get a more active life, even though currently I have a fractured foot. Since my parents died it's been tough with all of our mental health and all. So we're all getting there.

Respect my man, that is a huge burden you are carrying ... and carrying it well.

Don't forget to hit up others for support, it takes a village to raise kids even if you are superman.

 

[pantskyle]

Was a sad react to the part about wanting a visible disability so the flogs of the world will judge less harshly.

Seems to be a never ending supply of the snooty variety who believe they do the kid raising thing better than anyone else, with no understanding or empathy for challenging circumstances being faced.

Will add I'm the step father, I came into the picture and was there when the youngest boy was diagnosed. It was a whole new world and frankly it's not a nice one at times.

What goes on inside the heads, incredible.

 

[Jabba73]

Will add I'm the step father, I came into the picture and was there when the youngest boy was diagnosed. It was a whole new world and frankly it's not a nice one at times.

What goes on inside the heads, incredible.

Once you sign on with a kid, it doesn't matter if you are father/step father/foster father/father figure, the kids only care that you are there for them. The father part of the title is the only important bit, the rest is just a label for the confused and judgey types.

 

[philreich]

Was a sad react to the part about wanting a visible disability so the flogs of the world will judge less harshly.

Seems to be a never ending supply of the snooty variety who believe they do the kid raising thing better than anyone else, with no understanding or empathy for challenging circumstances being faced.

When our boys were younger, my wife took them 10 pin bowling. At one point, she took her eyes off our youngest son for a few seconds, and in that time he went to another table and started helping himself to some chips. When my wife came to retrieve him, she was told that she should learn how to look after her child better, and that she wasn't a very good mother (or words to that effect). Without batting an eyelid, she replied, "Would you like to have a go at looking after him?"

People who don't have kids with a disability have no idea what it's like, and just assume that the strange behaviour of such a child is due to poor parenting!!!

 

[Jabba73]

When our boys were younger, my wife took them 10 pin bowling. At one point, she took her eyes off our youngest son for a few seconds, and in that time he went to another table and started helping himself to some chips. When my wife came to retrieve him, she was told that she should learn how to look after her child better, and that she wasn't a very good mother (or words to that effect). Without batting an eyelid, she replied, "Would you like to have a go at looking after him?"

Have seen the judgement on faces when we have kids in our care, often we have no idea what will trigger trauma behaviour and what that behaviour will be until it happens.

Good on your wife for calling them out.

People who don't have kids with a disability have no idea what it's like, and just assume that the strange behaviour of such a child is due to poor parenting!!!

Yep.

 

[The Majestic]

Much love to you pal.

Thanks a lot.

Respect my man, that is a huge burden you are carrying ... and carrying it well.

Don't forget to hit up others for support, it takes a village to raise kids even if you are superman.

Thanks a lot, I will definitely do that, been getting some sessions with the psych lately to try and fix some mental stuff up that I have been going through.

 

[Jabba73]

Thanks a lot, I will definitely do that, been getting some sessions with the psych lately to try and fix some mental stuff up that I have been going through.

Brilliant, you are no good to anyone if you don't take care of yourself as well.

Dual parenting is hard enough, being a single parent to your own siblings is mind blowing. Kudos

 

[grumbleguts]

Autism isn't all bad - my other son is also autistic, but not to the extent of our other son. He and I were driving somewhere one night, when out of the blue he says to me, "Dad - what's 10 times 2016?"

I replied, "20160."

I could tell that his mind was ticking over at a million miles an hour: after a few seconds he floored me with, "Oh that's right - that's 64 times 315 isn't it?"

I nearly drove into a light pole!!!

My youngest is pretty decent at mathematics. He once asked me (in a booster seat at 4 yo, in the back of the car while I was driving) "Dad, how many seconds in a week?" to which I replied "I don't know" 2 minutes later he said "604,800"

I did the quick check in my head, pulled over and said "get out of the car ya freak! I'm not having you behind me, it's frightening" (this part s untrue)

By the time he was 5 he was doing year nine maths solving simultaneous equations at the local high school, where the primary school's cleaner would drive him.

When he graduated year 12 (14 yo) we had 3 news crews in our house when he opened his results. He just stared at the screen as his results came up (OP1 is the highest you could get in Queensland - and that's what his result was, but there was no reaction, the news crews wanted cheering, tears, happiness, joy and they got this conversation:

"Well?"
"Yeah, I saw it."
"And?"
"It was a 1."
"Are you happy?"
"Yeah, I guess."

He's not autistic except that he is somewhere on the spectrum, in that we all are to some extent, but these sorts of data don't interest or impress him. They may as well have asked him how many metres was it to the chemist, and he'd have given them the answer with as much emotional investment as a number that represented the net result of 9 years of schooling. (for most people, it's 12 years, but in terms percentage of life it's a still a big chunk)