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ReyNeedsAnswers
Casual Contributor

Hurting and causing hurt because I didn't understand.

Hi. I'm a sole carer.  Mum.
A completely burnt out Mum; desperately banging on the thick steel doors of uncaring professionals at every turn, trying to get answers or help with my son, who has just turned 12.

I will add right here that he was put on (medication name removed) 3 months ago and it has been the first miracle in 2 years of utter hell.  It is a medication used to treat schizophrenic patients. Things aren't perfect, but neither of us are dead right now as a result. 
I'm interested to hear from anyone who has experienced early onset psychosis and or schizophrenia. 

 

Tonight I stumbled upon the series called: "You can't Ask That" on ABCiView.  The third episode just so happened to be on Schizophrenia.  I've learnt a few things from watching it and then subsequentally finding my way to the SANE website for more information. 

My son does have a diagnosis of autism, however up until the age of 10 was doing well, despite dozens of, what I now realise from reading tonight; triggers to a lifelong change in the brain.  (Father has ADHD, likely Aspergers, self-absorbed; he's a drug and gambling addict from a family with a long history of severe physical and mental deformities. His Father and I were not together but he has been in the picture enough to add to the trauma) 
My son was aggressively treated in day care: then severely abused by a teachers aid from the first day he set foot in kindergarten, we've had abusive neighbours going out of their way to cause trauma and insomnia for 8 years.  Changed schools 4 times with a year of homeschooling in the middle. The list goes on.  A very bad start basically. 
He was doing extremely well with the year of homeschooling.  A keen learner, interactive, worked hard, finished tasks, was able to focus.

Then BAM...virtually overnight, psychosis began and it was relentless and severe.  23hrs a day. Screeching like he was being murdered. desperately banging at walls and wailing. soiling himself. Seeing things that weren't there, looking at things that weren't there, as though he was interacting with them or trying to pick them up.Not sleeping or eating. Hysterical. Non..Stop. 

Police wouldn't help. Ambulance wouldn't take him. Crisis lines were useless. 
Medications did nothing. He LOOKED like a 1700's asylum patient.

This continued for about 17months. Some anxiety medications would seem to take a hint of the edge off for a few days, but caused other symptoms and would then fail. 

A medication used to treat schizophrenia (that I had to remove the name of in order to publish this) is the ONLY one that has worked and continues to work. He's on 10-15mg's a day.
(All the other trials of medications, for adhd and anxiety etc, actually made him worse)

His last primary school made the occasional suggestion that he was schizophrenic (although they were also confusing that with multiple personality disorder; because he can just flick like a switch;  screaming hysterically, then laughing hysterically, then fine.. or variations of this.)
None of his current symptoms were part of his autism.  He is a different person. When he changed, he began investing all of his awake time creating no-win situations designed to distress and anger me, all while shrieking and wailing for hours. They would continue for 8hrs, then switch to the next one. It was toxic. I was being emotionally and mentally abused by my own child.
He also developed severe OCD and defiance. 
About 9 months ago, he stopped being able to 'hear' what I was saying, even for simple expected answers like yes or no, while looking directly at me.  A recent hearing test says, there is nothing at all physically wrong with his hearing. He just can't concentrate on words at all- He hears something completely different to what is said. Perhaps the noise in his head is too loud?
An EEG a year ago showed some unusual changes in brain patterns, but no answers as to what or why.  


Severe trauma has affected both of us.  Burnout and 2 years of toxic 'abuse' has left me with zero patience with him and I now find myself saying horrible things to him in response to his behaviours.  I am crushed with attacks and judgements and undermining from all the sources whom I have attempted to engage with, to manage him. (I know, I sound paranoid.  I'm not.  I go to each new service I'm fobbed off to, fully expecting that THEY will provide the service the previous service sent me to them, to receive, but it's an endless merry-go-round of too-hard-baskets) 

It has been like living with an abusive partner, only it's my child, and i have nowhere to go to get away from it; No respite or help. I have sat in the car in the back yard with worksite earmuffs on, sobbing, just trying to get away from the relentless screaming. The pediatrician and the psychiatrist at the children's hospital have put him in the too-hard basket. 
It's complete isolation. 
He's supposed to be starting highschool this year. We still don't have a school and we don't have the appropriate code with the dept of Ed NSW to GET a school that can cope with him. 


Anyhow, It genuinely sounds like my son may in fact have developed early onset schizophrenia!? or perhaps it won't progress beyond a change in personality and psychosis?  (I have tried easing off with the medication and the symptoms are still there strong as ever, so he definitely needs to be continuing this medication.) 
I worry I might now be adding to his negative altered mental state, whatever the issue is.  At any rate, 2 years is a LONG time to endure such drastic symptoms  😞  
I just wish I could get a professional service to stop treating this Mum like crap and ACTUALLY take this on board and give it the time of day to find out what's wrong. 

Sorry for the lengthy post, I'm hoping only those who have some familiarity with all this, have continued to read.  I can't find examples of this behaviour on the web or youtube so I am trying to see if these tick all the boxes I now think they do. 

11 REPLIES 11

Re: Hurting and causing hurt because I didn't understand.

@ReyNeedsAnswers  Hey ReyNeedsAnswers and welcome to the forums. I have a autistic son with schizophrenia and epilepsy and a mil to moderate intellectual disability. He started seeing and hearing thigns when he was about 7 but it was put down to his autism and  epilepsy. When he turned 15 all hell broke loose and his symptoms became out of control. Violence in the house, police were on speed dial it was a nightmare. 

 

I havent had a chance to read your story fully yet but at age 12 you have time to get things in place re good psychiatrist and proper medications (meds wont always get rid of hallucinations and delusions but will help with the worst of it). My son2 now is doing well but it took a good 6 years for that to happen .... his psychiatrist told me he had to get over his teenagehood and psychiatrist was right. 

 

The thing is I knew my son2 had autism and schizophrenia when he was young but no one listened to me (I was his mother what would I know ...). My advice is to be prepared for the worst and hopefuly that wont happen. Sorry about not reading yor post as yet am going out soon but will when possible. I hope my story helps a bit Take care. greenpeax

Re: Hurting and causing hurt because I didn't understand.

@ReyNeedsAnswers  I have had another quick read of your post be very careful of the psychiatrists you come across you need a specialist one in autism and early onset schizophrenia. Help is out there but it will take time and patience but you and your son will get there. Again just because a person is a psychiatrist doesnt mean they have the indepth knowledge that you need to help your son. Go with your gut hun. The internet is your friend re info and get in before he turns 15 pease do that is very important. greenpeax

Re: Hurting and causing hurt because I didn't understand.

@ReyNeedsAnswers  Back from my walk 🙂 and have managed to read your post several times to really absorb what is going on. You will get told by certain professionals that you cannot have the diagnosis of schizophrenia and autism at the same time that is bs. They dont like to say it but you can. Re check his eeg he may need epilepsy medications which will help stablize his moods too all of which is beneficial. When my son2 used to end up at the local mental health centre at 15 I heard of a family with a 12 year old autistic son who was delusional and violent towards them so they would send him to hospital for respite .... not perfect but can be done. You need a break from the stress too hun. If you send him to hospital he will at least be safe and so will you for a time. It angers me that still these situations are not being addressed. My son is now 26 and calm but on anti psychotics and epilepsy meds. If you want to talk more just tag me using the @ infront of my name. I am more than happy to help a fellow mum. Love greenpeax

Re: Hurting and causing hurt because I didn't understand.

Thankyou so much! 
Your replies are very helpful !! 
You have given me some hope and strength re the psychiatrist issue. I will look for another one.  This one fobbed us off by the second visit (while also telling me it would get worse) Honestly I thought she was my last resort...but she had her secretary cancel and reschedule my appointment and when I turned up for the rescheduled one, she told me she was too busy to see me because I was a no show.. for the one they had rescheduled!.  She was downright rude to my face in the waiting room, in front of everyone and behaved with pure disgust at my son.  
Her locum/intern was the one who prescribed him with our saviour medication over the phone after the first visit and it was her locum who she fobbed me off to when she publicly snubbed us at the third visit. Sadly.. being a locum means..he has gone onto his next rotation.  He seemed to know alot more than her. 

There has long been some concern about seizures.  He has displayed some seizure like behaviour since he was an infant.  Awake seizures, like a sudden blinking drop of the head. It's only a flash but I am concerned it will continue on to full blown epilepsy. 

 

And heck yes! Honestly as soon as you have a child, suddenly the world starts rolling their eyes at you, and everyone else is an expert and you are just 'Mum' and "what would you possibly know about your own child". 
Of course, when the few tests I've had to jump up and down to have done, come back as normal or with no real answers, their patronizing views are further validated.  
If there wasn't genuinely something alarmingly wrong, I wouldn't be making the huge efforts to get answers or help. 
I'll do a search for specialist psychiatrists now.  Fingers crossed. 

Re: Hurting and causing hurt because I didn't understand.

@ReyNeedsAnswers  Good luck and tell me how it goes. I am always here to talk with when times get bad. Just know you are definitely not alone. It is more common than the 'professionals' like to say. I once got told my son2 had 'weird and wonderfuls' when describing his hallucinations ..... they weren't weird and wonderfuls to him they were nightmarish and horrifying. Take care. greenpeaxx

Re: Hurting and causing hurt because I didn't understand.

@greenpea thankyou so very much!

 

And you're indeed correct re being told it's just his autism and he cant also have schizophrenia.  Perhaps if they had to sit and listen to the frightening muttering /whispering for hours, they would change their minds?

 

Dear me; "weird and wonderfuls". 😮

Experts say the most ridiculous illogical things when they don't want to look at what's right in front of them . 

My other favourite is "maybe he just doesn't need much sleep "

 

Re: Hurting and causing hurt because I didn't understand.

@ReyNeedsAnswers  If anything they need more sleep than less and you know what so do you. You need time to recoup after looking after your son all day. Yes that psychiatrist (I wish I could tell you his name lol .... re the weird and wonderfuls) was such a jerk it was when my son was 7ish and I have never forgotten it. I would love to see him now and say hey remember me and my son2!

Re: Hurting and causing hurt because I didn't understand.

 

Precisely re sleep. Nobody can survive on 20 minutes or a fractured hour of sleep for years on end. That's really not a 'thing'.  

 

Wouldnt it be glorious to go back to them all and set them straight! 

All together in one room would be the most efficient way. Lol

 

Re: Hurting and causing hurt because I didn't understand.

Hello @ReyNeedsAnswers 

So glad our beautiful strong and utterly gorgeous @greenpea could chat with you.

 

Hearing you about frustration with professionals who do not care, but also have to admit that I would not be here without professionals ... its a mixed bag....

 

I am so sad your son's trauma came out after his period of homeschooling with you, and I want to affirm you as a dedicated mother.

 

I also have homeschooled, but my situation was not extreme as yours.  File the memories of him as a lovely boy keen to learn when given a chance .... away and never forget them ... reassure yourself and when he can listen ... reassure him ... about his good qualities ....

 

To  me, all the behaviours you mention stem from trauma, rather than a diagnosis ... of this ... or that ... the professionals are supposed to be trauma informed .... hmmmm.

 

The noise in his head being louder than outside ... makes total sense to me.

 

The meds may help reduce his arousal and panic and as such are wise to take, but dont undersestimate your mother's love.  Protect yourself, and learn about self care. You are brave to have survived and I hope your searches will be rewarded.  Society's craziness has some responsibility for the pressures on the vulnerable. Do not be overwhelmed by long medical labels and stay true to your gut as greenpea said.

 

Teach him wholesome methods of self soothing if you can. Also try and find an angle from something in his special interests as part of the autism that can settle him ... or inspire him in a positive way .... so he can learn difference between .... eustress .... positive stim ... and distress ... we wont say more about that ...

Hugs.

It has been a long hard road I am sure and its not over, but I hope positive things enter your lives ...

My story is all over the forum ... in little bits.

Take Care

Apple

 

 

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