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-Mumma-
New Contributor

Childhood schizophrenia

When my son was 15yo he came to me and said "who are these voices in my head?" The paranoia and psychotic episodes started and at first they were directed towards me. My boy would tell police and doctors "my mum has a hit out on me, she's going to knock me off" it absolutely broke my heart seeing him go through this. 

 

I exhausted everything available in the community to get help for him, headspace, camhs, youth justice, mission Australia, community mental health. He's been on so many different medications including the monthly depot shot. He has been in and out of detention centres and hospital mental health wards.

 

My son has an older sister and three younger sisters. I had youth justice tell me that I had no other option left but to call the department of Child protection and ask them to step in, I couldn't believe that it had come to this! Surely there was somewhere else to turn to? there isn't. 

 

My boy has been in the care of DCP for almost 12 months now, they hired carers 6 hours a day to try and keep him busy and out of trouble, they are exhausted. He has been back in the detention centre five times since being there, he has been self harming and drowning himself in alcohol to try to rid of the voices in his head. 

 

I have been working everyday with DCP to try get the right help for my boy, he calls me between 3-10 times a day always asking if he can come back home to me and his sisters. My heart is broken. I feel like I've had to choose between having my son or my daughters.

 

So where is my boy today? He's back in the youth detention centre, they have him in hand cuffs whenever he leaves his room because he can get paranoid over someone very quickly and become violent. He is only allowed finger food because they don't trust him to not self harm. He is isolated from everyone else while he's there which makes his symptoms alot worse, when he's bored the voices get worse.

 

I have DCP apologize to me and they feel like they are failing my son and I. They have said "somehow you guys have fallen through the gaps in the system" I have worked so hard, how has it got to this point? I need help for my boy.

 

He tells me he loves me everyday and he wants to come home. What will happen once he turns 18 in a few months? I'm broken worried and lost. Please is anyone there to help? 

 

 

11 REPLIES 11

Re: Childhood schizophrenia

Hi @-Mumma- and welcome to the SANE Forums.

I am so sorry to hear what you and your boy have been through, it sounds like it has been such a hard journey to help him find the support that he and you deserve, and that you are still on that journey. Falling through the gaps of the health and justice system must be so hard for you, as a mum, to see and navigate. In all of this journey, I can how much love you have for your son, and the pain and concern you are holding at the moment knowing your son is approaching 18. 

 

You've mentioned that your son is currently connected in with DCJ, and that he has 6 hours a day care. Have DCJ spoken with you about a plan for your son when he turns 18, or what support services he will be able to access?

 

In reading your post, I am also wondering about your wellbeing. It is such a big amount of stress you and your family have been under, and I am curious if you have support for you? 

 

Our community here is a space where so many carers come to seek support from those who understand because they have been there before. I am hoping that you find lots of support, kindness and resources here Heart 

Re: Childhood schizophrenia

@-Mumma-  Hi -Mumma- my son2 was seeing things at around 6 years old and when he was 16 things really took off with delusions and paranoia. With the right medication and psychiatrist and psychologist he is in a relatively good place at 28. Hang in there his psychologist said that once he went through puberty he would be in a better place and that was true. I am here if you ever want to talk. @greenpea

Re: Childhood schizophrenia

Hello @-Mumma- 

Oh my, I can hear your suffering and worry for your boy.  

I have a 17.5 yo son who was diagnosed in August 2020 with Schizophrenia and OCD.  He has a range of symptoms he lives with, some part of the Schizophrenia (believing he is being watched, monitored, controlled, is in a science experiment, and his father and I are imposters - this symptom not all the time thankfully because it really scares me), and the OCD has some awful symptoms that really distress him (constant violent movies playing in his head of stabbings, him stabbing others, being stabbed by others, and a voice loop "and then he said, and then she said" that plays NON STOP).  He had a diagnosis of severe anxiety and panic disorder with some psychosis (auditory and visual) when he was 8yo.  We were on suicide watch at the time and he had outbursts of violence.  With treatment on anti anxiety meds, melatonin to get his sleep cycle improved, and about 3 years of psychology counselling he learned to manage his anxiety instead of it managing him, and he had strategies to help him get to school/stay motivated/push through anxiety and panic. 

As he hit high school he had 3 major events in the first 3 years - 1st year he missed about 3 months of school owing to glandular fever, year 8 he had eye surgery to correct both his eyes mid year and missed about 2 months of school, year 9 in May his father had a brain hemmorhage and nearly died and spent over 3 weeks in Sydney in Neuro ICU (we live in regional NSW).  Our whole family has been through the mill and there have been times I was very focussed on his dad as he recovered from his acute illness.  But I started to notice my warm, funny, affectionate boy becoming more distant.  I didn't know if it was just him growing up, becoming more independent.  It got to the stage he would be out of the house all the time, staying at friend's houses on weekends, then my friend figured out he was using marijuana when I was in Sydney looking after my husband and my son had returned home.  I tried to get help for him with a GP who treated me like a meddlesome mother who was being over the top about my son using a bit of pot.  I knew something wasn't right.  

 

Then during the first lockdown last year, the wheels really fell off for our boy, he couldn't go out and source pot, and he had to be at home.  We started to notice him dissociating, being very vague and agitated.  He agreed something was wrong, but was very withdrawn and hard to get through to.    Getting a diagnosis took about 4 months during that time, we were so worried for him and on suicide watch again.  He had already diagnosed himself with Schizophrenia and he was correct, the OCD I hadn't identified and he hadn't either.  The marijuana gave him relief from his OCD symptoms in particular.  Getting the right meds has been a process, he's had 2 CAMHS social workers and 3 psychiatrists.  

 

So I can really relate to your experience with your boy, and I really feel so much for you with all that your boy, you and your daughters have been through.  I am very aware that we are really fortunate to live in a small enough community where I have been able to navigate supports.  I work in disability services/human services, and have a lot of contacts.  One of my close friends is a social worker, and her husband is a GP with specialty training in mental illness.  Even so, even with those contacts, getting help from CAMHS has been a process and not easy.  I am also fortunate that while I am not a clinician, I work with a mental health service and my colleagues who are clinicians listened and understood, and also gave advice on what I should ask for.  Nothing prepares us for our child to develop such a serious mental illness, does it?  And how can we be expected to 1. know that our child has a mental illness when it might look a lot like a teen is being rebellious or asserting their independence , 2.  know what questions to ask, how to talk about it, who the right people to support are.  

 

I am so amazed at your strength @-Mumma-  you have had no choice in what has happened, but you have forged on, done everything you can for your boy, while also looking after your girls.  You must be so exhausted?  The fact your boy felt safe to come to you at 15 and ask you about the voices in his head shows me that he knew you would help/support him and that you have a close relationship.  You have tried every avenue, chased down every resource, and as a person who has worked as a case manager, you have done an excellent job and been so darned persistent.  But it hasn't got the results you wanted for your boy, and there's no guarantee about what happens next.  It is deeply painful to fear the future, or to wonder if the future for our children with shizophrenia will be joyful, hopeful, if they will thrive.   

 

I really hope there will be an improvement for your son, he must be really suffering and I can understand why it is breaking your heart to see him locked up and in such a state of crisis so often.  I don't have any answers for you, but can I offer a slither of hope?  My son lost his job as an apprentice in August, after he was hospitalised in a sub acute ward and then the lockdown happened, and he wasn't allowed on the construction site owing to staffing limits/plus he's refused to get vaccinated.  He really spiralled down fast, drinking alcohol at every opportunity, he picked up a little bit of labouring work, but would spend every cent on alcohol and cigarettes.  He started to self harm a little, nothing dangerous, then ended up accidentally in hosptial from taking prescription drugs that a 'friend' gave to him to get high.  It was very stressful.  In addition, his relationship with his girlfriend of 11 months hit a rough patch and he didn't cope at all.  In all of that time, I sat him down and got him working on a plan to get a job because when he's busy with his hands and occupied then he's less in his head/it distracts him.    I work now in career advising, so he knows I know my stuff.  He applied for a traineeship job at Council, and I coached him through the application, he got an interview, and got a job offer.  He started yesterday working full time.  I recognise that what my son has been through has not been as intensely challenging as your son, and that the more your son has come into contact with the justice system it adds extra layers of vulnerability.  I realise your son's journey is different, but I hope that knowing that it is possible to recover from the constant crisis, that it is possible to have hope for your son, that knowing that will give you strength, and also allow you to give your son some hope for his future.  It will not always be like this, change is possible, recovery is possible.  It might take a long time, it may be an up and down process, sometimes it is not clinical people who our child needs, he might need a peer mentor, or a support person to teach him some practical skills?  While he's at risk of self harming and at risk of violent outbursts I can understand that it limits the supports that he can recieve, and really restricts his liberty.  But it's one of those things where unless he has hope that things can be different/get better/ it sort of becomes a cycle that is hard to break.  

 

I hope you found this helpful, I do ramble a lot.  Tinker x

Re: Childhood schizophrenia

Sorry, it was August 2020 that my son was diagnosed!

Re: Childhood schizophrenia

@greenpea  thank you for sharing the story of your son's journey.  It gives me hope that my son will get through these years and there might be a better future ahead that is less characterised by struggle and crisis. 

Re: Childhood schizophrenia

@Tinker67Tinker67 our special children need all the love they can get as they struggle through with this terrible illness. I am always here for you. Love peax

 

ps: on my journey with my son2 I met some great doctors and some average and some hopeless. I remember once when my son2 was about 6 1/2 when a doctor from a well known childrens hospital where I live called my son's delusions and hallucinations as "weird and wonderfuls" he totally dismissed him as having early childhood schizophrenia. Thankfully the good doctors outweighed the bad.

Re: Childhood schizophrenia

Thank you @greenpea , that means a lot to me. 

Former-Member
Not applicable

Re: Childhood schizophrenia

Do you have an update?

Re: Childhood schizophrenia

Hello @Former-Member 

 

Yes, I can give an update.  I've been very busy, trying to keep everything together at home and I've commenced study again, so I'm sorry for the delay in updating my post. 

 

Our boy experienced a big improvement during his hospital visit.  The psychiatrist and staff observed and got to know him over 3 weeks.  He felt comfortable and found encouragement in connecting with other patients with lived experience.  His meds were completely changed, they took him off a medication, which was not having good side effects.  After coming off it, he was more talkative, able to communicate ideas better.  I didn't know the medication could have the side effect of stopping his ability to communicate and talk with us.  He didn't really notice the change, but I did.  I've had more conversations with him in the past 6 weeks than in the past 2 years.  It is so lovely to see our boy feeling better.  He's not 100%, but from observation he is a lot lot better and able to manage daily life a lot better.  He spends a LOT less time in his bedroom, and has reconnected with a bigger circle of friends. 

 

His psychiatrist thinks that anxiety is the biggest component of his illness, and when that gets out of control then psychosis and OCD shows up.  She's included more anti anxiety medication and only one antipsychotic med.  So far, her assessment seems to be correct.  

 

We wanted our boy to keep seeing her, but our local mental health team and the mental health team where she is based have both refused to make that happen.  She's delightfully subversive though, and called me to tell me, and say she doesn't agree with their decision.  So she's agreed to see him privately in her private practice any time, outside the public health system, which suits us.  We are bypassing the public health system as much as possible - the staff don't make decisions from a trauma informed approach, and wanted our boy to see yet another new psychiatrist, rather than the one who has actually had the chance to get to know him better and whom he feels safe with.  Hopefully that works out ok.  We can still call the sub acute clinic anytime and request a hospitalisation, and the psychiatrist can assist with that request if needed.  So fingers crossed hey?

 

He has started a new apprenticeship in the same trade he had been working in last year, and is enjoying working in a team with other young builders.  Unfortunately, he got diagnosed with Covid yesterday so we are all quarantining for 7 days.  So far he isn't too sick, in fact he says he doesn't feel sick at all today.  Hoping it stays that way. 

 

He's still using alcohol at every opportunity, and blows a huge amount of his income on alcohol and cigarettes.  It's going to sound strange, but that is better than he was.  Before he went to hospital he was using a regular concoction of illicit substances.  I'm not happy about excessive alcohol or the cigarettes, but it's a relative risk compared to what he was doing.  

 

You can probably tell that I'm feeling lighter, less stressed and worried.  Life feels more possible for all of us, it's not perfect of course, but we are looking after each other as a family, and I don't fear as much for what will happen for our son as he matures.  I feel hopeful that we will have good people to help us when we need, and I know where to find them. Which, and this is so important, includes the support I have found here on the SANE forum.  Without it, I don't think we would have got through this as well, at least I wouldn't have. 

 

How are you Petal?

 

All the best

Tinker

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