Mental Health

[Rocket man]

I know of someone who is a psychologist who work in the school system.
Assessing children who could be on the spectrum.
Psychr

Sorry.
As I was saying. She currently works in the school system.
A psychiatrist would normally sign off on her diagnosis.

 

[Stevie]

Mate that is an absolute shit go. It’s f**ked! Glad you vented tbh. I still cannot believe the amount of fraud going on with the NDIS also. If you take money from special needs or government trying to spend here, you truly are a special kind of parasite.
My best mate has a son very in the spectrum and they’ve made great improvements through private care (he’s been spending 100k plus a year) but almost none can do that.
Autism is not going away and it’s increasing at a phenomenal rate, we need to be spending a shitload more as a society to understand
Please keep us updated on how you are travelling mate that sounds f**king frustrating.

PS My best mate has started a significant charity for Autism that has the backing of Twiggy Forest etc. happy to share privately if you ever do charity stuff with work.

 

[Blue & Gold Never Fold]

Eele, I’m a long time reader and very rare poster (lots of personal challenges). Was reading about your situation… I may be well off the mark but thought I’d throw it out there. Has your son’s hearing been tested? I only ask because some of the behaviours you’ve described are similar to what my daughter presented with. We saw so many professionals and they were convinced she was autistic. We ended up seeing a leading psych (I’ll find his name if u like) who took one look at her and said she’s not autistic, there’s something else going on. We were connected into the Westmead Children’s Hospital and after every test under the sun and her being just shy of 5, she was found to have a genetic disorder and a hearing impairment. She’s fully deaf in one ear (cochlear implant) and low level of hearing remains in the other (wears hearing aid).

 

[Eelementary]

Eele, I’m a long time reader and very rare poster (lots of personal challenges). Was reading about your situation… I may be well off the mark but thought I’d throw it out there. Has your son’s hearing been tested? I only ask because some of the behaviours you’ve described are similar to what my daughter presented with. We saw so many professionals and they were convinced she was autistic. We ended up seeing a leading psych (I’ll find his name if u like) who took one look at her and said she’s not autistic, there’s something else going on. We were connected into the Westmead Children’s Hospital and after every test under the sun and her being just shy of 5, she was found to have a genetic disorder and a hearing impairment. She’s fully deaf in one ear (cochlear implant) and low level of hearing remains in the other (wears hearing aid).

I am glad to hear that your daughter got the care she deserves.

And welcome!

Yes, he had his hearing tested - his hearing is normal for his age, thankfully.

I tell people about some of my son's meltdowns (I hate that word, but there's really no other way to put it), and they say, "Oh, that's just kids."

Well, I put my son down for bed at 8pm last night.

He had been screaming non-stop (pretty much) since then - five and a half hours of screaming, and "shutting down".

Naturally, I'm exhausted, but I'm really more concerned about him - he's vomited twice already (I assume from stress; he has a history of getting so upset, that he vomits), and I am totally out of ideas to help regulate him.

Cuddles...treats....food...screen time...playing with him...ignoring him...bath/shower...offering to let him play outside...going for a drive....nothing has worked.

I keep thinking, "He must tire eventually..."

But this is no way for him to live.

And the NDIS now want to withdraw assistance.

I will do what I can to support him, but I'm completely disillusioned that a system that's designed to aid those who need it is abandoning us.

 

[emjaycee]

I am glad to hear that your daughter got the care she deserves.

And welcome!

Yes, he had his hearing tested - his hearing is normal for his age, thankfully.

I tell people about some of my son's meltdowns (I hate that word, but there's really no other way to put it), and they say, "Oh, that's just kids."

Well, I put my son down for bed at 8pm last night.

He had been screaming non-stop (pretty much) since then - five and a half hours of screaming, and "shutting down".

Naturally, I'm exhausted, but I'm really more concerned about him - he's vomited twice already (I assume from stress; he has a history of getting so upset, that he vomits), and I am totally out of ideas to help regulate him.

Cuddles...treats....food...screen time...playing with him...ignoring him...bath/shower...offering to let him play outside...going for a drive....nothing has worked.

I keep thinking, "He must tire eventually..."

But this is no way for him to live.

And the NDIS now want to withdraw assistance.

I will do what I can to support him, but I'm completely disillusioned that a system that's designed to aid those who need it is abandoning us.

I can only sympathise with what you and your family are going through, however I suggestion for what it's worth, take your concerns and your complaints to your local MP maybe? I know they are not psychologists but the NDIS remains a government funded initiative and if you are not getting what you believe you need, your local MP has a responsibility to assist you... maybe.

 

[Legal Eel]

I am glad to hear that your daughter got the care she deserves.

And welcome!

Yes, he had his hearing tested - his hearing is normal for his age, thankfully.

I tell people about some of my son's meltdowns (I hate that word, but there's really no other way to put it), and they say, "Oh, that's just kids."

Well, I put my son down for bed at 8pm last night.

He had been screaming non-stop (pretty much) since then - five and a half hours of screaming, and "shutting down".

Naturally, I'm exhausted, but I'm really more concerned about him - he's vomited twice already (I assume from stress; he has a history of getting so upset, that he vomits), and I am totally out of ideas to help regulate him.

Cuddles...treats....food...screen time...playing with him...ignoring him...bath/shower...offering to let him play outside...going for a drive....nothing has worked.

I keep thinking, "He must tire eventually..."

But this is no way for him to live.

And the NDIS now want to withdraw assistance.

I will do what I can to support him, but I'm completely disillusioned that a system that's designed to aid those who need it is abandoning us.

It may seem trite, but is this any help:

Complaints about the NDIS Commission | NDIS Quality and Safeguards Commission

We welcome all feedback, including complaints and suggestions. If you’re not happy with an NDIS Commission decision, in some cases you can ask for a decision to be reviewed.

www.ndiscommission.gov.au

Mind you, it's probably just more bureaucracy!

 

[Soren Lorenson]

It may seem trite, but is this any help:

Complaints about the NDIS Commission | NDIS Quality and Safeguards Commission

We welcome all feedback, including complaints and suggestions. If you’re not happy with an NDIS Commission decision, in some cases you can ask for a decision to be reviewed.

www.ndiscommission.gov.au

Mind you, it's probably just more bureaucracy!

Just to respectfully correct this, the Commission is not actually the NDIS, it’s the oversight body. Complaints about the NDIS can be made here:

https://www.ndis.gov.au/contact/feedback-and-complaints

The Quality and Safeguards Commision investigates dodgy providers etc.
@Eelementary you should have been provided information in writing about why the NDIA have made the decision they have made, (ie the funding cut) and this info has details about how can can appeal/ or ask for a review of the decision. If you haven’t been provided with this info you need to request it. If you engage a Disability Advocate or even go to your local member you need to have this documentary evidence to assist your case.

 

[Eelementary]

I can only sympathise with what you and your family are going through, however I suggestion for what it's worth, take your concerns and your complaints to your local MP maybe? I know they are not psychologists but the NDIS remains a government funded initiative and if you are not getting what you believe you need, your local MP has a responsibility to assist you... maybe.

Definitely.

I sent them an email this morning, on my 3 hours' sleep.

Suffice it to say that it was not a positive email...

 

[Eelementary]

It may seem trite, but is this any help:

Complaints about the NDIS Commission | NDIS Quality and Safeguards Commission

We welcome all feedback, including complaints and suggestions. If you’re not happy with an NDIS Commission decision, in some cases you can ask for a decision to be reviewed.

www.ndiscommission.gov.au

Mind you, it's probably just more bureaucracy!

Thanks, mate - anything that can shine a light on the NDIS's failures is a positive, in my eyes.

 

[Eelementary]

Just to respectfully correct this, the Commission is not actually the NDIS, it’s the oversight body. Complaints about the NDIS can be made here:

https://www.ndis.gov.au/contact/feedback-and-complaints

The Quality and Safeguards Commision investigates dodgy providers etc.
@Eelementary you should have been provided information in writing about why the NDIA have made the decision they have made, (ie the funding cut) and this info has details about how can can appeal/ or ask for a review of the decision. If you haven’t been provided with this info you need to request it. If you engage a Disability Advocate or even go to your local member you need to have this documentary evidence to assist your case.

Believe it or not, this NDIS provider has been appalling at proving documentation - they even billed the funding for daycare visits when the case worker was off sick...

I have requested the information from them, because I intend to appeal their decision.

They cannot reasonably tell us that our funding will be cut, when a vulnerable little boy is left in the dust.