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Original poster

My Ds has been in a psychiatric hospital for 4 years

258 replies

Sammysees · 17/02/2023 21:24

I know there has been previous threads on this topic. I thought you may have questions about what it’s like for a parent with a child (young adult) in long term psychiatric care. AMA.

OP posts:
Original poster
Sammysees · 17/02/2023 23:07

Icedlatteplease · 17/02/2023 22:55

I'm not sure this is the right place for whst you have posted.

DS is 15 has ASD but is also very mentally unwell and actually also quite dangerous. I've spent nearly a year trying to keep him at home and get appropriate treatment for him. Despite the fact he is now getting treatment he is still very very ill and his doctors are recommending admission

I don't need any more guilt about what we have tried and failed to achieve

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I am sure, like me, you have done everything in your power to help your son. You should have no guilt whatsoever. You are amazing Flowers

OP posts:
Icedlatteplease · 17/02/2023 23:09

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

I very much doubt you share the same experiences as DS.

Unless you regularly have visual and auditory hallucinations, and believe you are fighting (and losing) a war, your experience of ASD and how it interacts with mental health will be very different from DS

Just because you have a shared diagnosis does not mean you speak for all people with Autism. Start your own thread by all means, but don't berate orher for talking and wanting to talk about experiences that don't necessarily align with your own.

The OP has already been incredibly helpful, so far I haven't been able to talk to anyone who can say I've been there. It's deeply precious

HangerLaneGyratorySystem · 17/02/2023 23:15

I'm so moved by your experience and how you've tried to help your DS. I only have experience of my DD19 suffering mental illness, so not autism, but it was brought on by horrendous bullying in year 7 onwards. Her psychiatrist (who is an eminent NHS expert) wrote to the head teacher and he never even acknowledged the letter.

I have formed a support group for other parents whose children have various MH issues, I have to say most of the young people involved are autistic but also have diagnoses of depression, anxiety etc., its very similar to what my DD is going through so we can support each other in many ways. We always say that we are allowed to be sad, allowed to grieve for what might have been. I don't know - we are just finding our way together I suppose. I wish there was a support group for you and parents in your position OP but thanks for posting here. People need to know as much as possible about residential and secure settings and all the routes in and out of them, but I think your post also touches on how devastating bullying in schools actually is - changed our DCs' lives.

Original poster
Sammysees · 17/02/2023 23:16

CaraVann · 17/02/2023 22:58

Do you have a partner? Do you have any support for you op? You must have been through hell and back, I am so sorry your ds didn’t get the support when he needed it the most.
I am 50 and believe I have undiagnosed autism. I have truly found live very difficult at times.
My dd14 is on the waiting list for an assessment, she struggles with school and they do little to help despite my constant meetings with them.
Our 13 year old niece has autism and was so bullied at school she is now home schooled and very isolated.
I really hope you have support for you too OP.

I am on my own. My family are fairly supportive but it is my friends and work friends that get me through each day. I probably have autism too. I don’t have the same difficulties as my son but I do have some difficulties. I am in my 50’s. I don’t feel the need to get a diagnosis - I am old enough to have found my own coping mechanisms. Are you considering a diagnosis for yourself. Understandably we are all different and what is right for me may not be necessarily right for anyone else. I also hope everything goes well with your dd. It can be very isolating.

OP posts:
Icedlatteplease · 17/02/2023 23:18

Sammysees · 17/02/2023 23:07

I am sure, like me, you have done everything in your power to help your son. You should have no guilt whatsoever. You are amazing Flowers

Show quote history

Honestly I try not and to a certain extent the decision is now out of my hands anyway

Please can I say how massively valuable this thread has been to me.

Original poster
Sammysees · 17/02/2023 23:18

Gagaandgag · 17/02/2023 22:58

Yes I totally agree. My brother was incredibly unwell. My parents made themselves also incredibly unwell trying everything they could to help him.

we are doing everything we can to safeguard our own son but sadly he has deteriorated and tries to self harm

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I am so sorry you are going through this too. It is so incredibly hard to get help - sometimes until it is too late Flowers

OP posts:
Original poster
Sammysees · 17/02/2023 23:20

Teenagehorrorbag · 17/02/2023 23:00

Thank you for commenting. As a mother of an autistic son I would always want to get things 'right' if I can, might you be able to expand on what has been said that was distasteful?

I personally (at the moment - although who knows what the future holds) don't need to know the details of OPs situation, but as a parent of a teen I doubt I'm alone in considering all the 'what ifs?' that go alongside that. Are you able to signpost us to information that might be helpful? I think most of us will take all the advice/support available, and would also welcome informed views on anything we should challenge? Thank you.

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I have found the National Autistic Society and MIND really helpful.

OP posts:
VerityUnreasonble · 17/02/2023 23:21

Hi OP, it sounds like your DS has had a very difficult time, I'm glad he is being supported. Is he in low secure/ rehab? Or medium secure? Are there plans to work towards discharge and what sort of support has been offered for this?

And out of noseyness is it an NHS or private provider?

I used to work in these sort of services and just wanted to say that we genuinely cared a lot about the people we worked with and always hoped for them to live the best lives they could. I still think about people I worked with years ago and hope they are doing ok.

Justmeandthedog1 · 17/02/2023 23:21

What would be the absolute ideal situation for your son when he is no longer thought to need the care of where he is? Magic wand time —- what would be perfection for him?

Original poster
Sammysees · 17/02/2023 23:22

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Yes he was considered a risk to others. This was judged by people who didn’t know him. The only person he is a danger to is himself.

OP posts:
Original poster
Sammysees · 17/02/2023 23:24

tricky29 · 17/02/2023 23:04

It will probably sound like an empty, stupid question but what support do you receive? It must be very hard for you. Often the situation/diagnosis is all anyone sees, for the the person it’s great but it doesn’t always make anything better, it just gives it a name.

I hope you have people propping you you x

I receive my support from friends. I have asked my GP for support. I have medication and CBT. It can help some people but I don’t find it works for me personally.

OP posts:
Original poster
Sammysees · 17/02/2023 23:25

Icedlatteplease · 17/02/2023 23:09

I very much doubt you share the same experiences as DS.

Unless you regularly have visual and auditory hallucinations, and believe you are fighting (and losing) a war, your experience of ASD and how it interacts with mental health will be very different from DS

Just because you have a shared diagnosis does not mean you speak for all people with Autism. Start your own thread by all means, but don't berate orher for talking and wanting to talk about experiences that don't necessarily align with your own.

The OP has already been incredibly helpful, so far I haven't been able to talk to anyone who can say I've been there. It's deeply precious

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Oh I agree with this completely! It has been precious to talk to others in the same or a similar situation.

OP posts:
Original poster
Sammysees · 17/02/2023 23:29

HangerLaneGyratorySystem · 17/02/2023 23:15

I'm so moved by your experience and how you've tried to help your DS. I only have experience of my DD19 suffering mental illness, so not autism, but it was brought on by horrendous bullying in year 7 onwards. Her psychiatrist (who is an eminent NHS expert) wrote to the head teacher and he never even acknowledged the letter.

I have formed a support group for other parents whose children have various MH issues, I have to say most of the young people involved are autistic but also have diagnoses of depression, anxiety etc., its very similar to what my DD is going through so we can support each other in many ways. We always say that we are allowed to be sad, allowed to grieve for what might have been. I don't know - we are just finding our way together I suppose. I wish there was a support group for you and parents in your position OP but thanks for posting here. People need to know as much as possible about residential and secure settings and all the routes in and out of them, but I think your post also touches on how devastating bullying in schools actually is - changed our DCs' lives.

The hospital has carers events each month and I agree - it is life saving having that support. I can talk to friends (and do!) but my friends who also have sons and daughters at the hospital understand better what living with this is like. I am so glad you have support.

OP posts:
Icedlatteplease · 17/02/2023 23:30

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Having had experience of care at home I'm not sure its any less traumatising than care in hospital. It certainly hasn't been any more successful and the impact on the rest of the family has been immeasurable

Original poster
Sammysees · 17/02/2023 23:32

Icedlatteplease · 17/02/2023 23:18

Honestly I try not and to a certain extent the decision is now out of my hands anyway

Please can I say how massively valuable this thread has been to me.

Show quote history

I am so glad it has been helpful. Psychiatric hospitals sound scary don’t they? But the reality is nowhere near as bad as the imagination. I am very impressed with my sons hospital. They do so much. Cooking, gardening, art, bingo, animal therapy. Obviously we don’t want our children there but my son is safe - and alive! I have to be thankful for that.

OP posts:
Original poster
Sammysees · 17/02/2023 23:36

VerityUnreasonble · 17/02/2023 23:21

Hi OP, it sounds like your DS has had a very difficult time, I'm glad he is being supported. Is he in low secure/ rehab? Or medium secure? Are there plans to work towards discharge and what sort of support has been offered for this?

And out of noseyness is it an NHS or private provider?

I used to work in these sort of services and just wanted to say that we genuinely cared a lot about the people we worked with and always hoped for them to live the best lives they could. I still think about people I worked with years ago and hope they are doing ok.

Oh you sound so lovely! He is in a low secure private hospital. He is nowhere near ready for discharge yet. They have said they would like him to go to supported living rather than come home. They think that would be better suited to his needs. I still work full time and even though I struggle with it - I need to sleep as well. I can’t keep him safe here on my own.

OP posts:
ThreeLocusts · 17/02/2023 23:37

Hi OP. No question, just huge respect.

I have a daughter who tried to kill herself aged 12, almost out of the blue. Feebly, but even so, terrifying. I recognise the 'sleeping outside bedroom door' part.

She's getting help but it's slow going. I don't know what the future holds. But somehow your thread is reassuring - the fact that you've always found the strength to go on.
🌹

Original poster
Sammysees · 17/02/2023 23:40

Justmeandthedog1 · 17/02/2023 23:21

What would be the absolute ideal situation for your son when he is no longer thought to need the care of where he is? Magic wand time —- what would be perfection for him?

I think my answer would be very different from his. I just want him to be happy. No more, no less. At the moment he doesn’t see a life for himself. He doesn’t want a job. He doesn’t want friends. He doesn’t want a partner or a family of his own. I really hope that changes in time.

OP posts:
Icedlatteplease · 17/02/2023 23:40

Sammysees · 17/02/2023 23:36

Oh you sound so lovely! He is in a low secure private hospital. He is nowhere near ready for discharge yet. They have said they would like him to go to supported living rather than come home. They think that would be better suited to his needs. I still work full time and even though I struggle with it - I need to sleep as well. I can’t keep him safe here on my own.

Show quote history

More questions.....

May I ask what age he was when he was convicted?
Have you had to go through stuff like getting power of attorneys?

Original poster
Sammysees · 17/02/2023 23:41

Icedlatteplease · 17/02/2023 23:30

Having had experience of care at home I'm not sure its any less traumatising than care in hospital. It certainly hasn't been any more successful and the impact on the rest of the family has been immeasurable

Show quote history

I can hand in heart say that my son hasn’t been traumatised in any way since being at the hospital. He doesn’t like it. He wants to come home. But never been traumatised.

OP posts:
Original poster
Sammysees · 17/02/2023 23:44

ThreeLocusts · 17/02/2023 23:37

Hi OP. No question, just huge respect.

I have a daughter who tried to kill herself aged 12, almost out of the blue. Feebly, but even so, terrifying. I recognise the 'sleeping outside bedroom door' part.

She's getting help but it's slow going. I don't know what the future holds. But somehow your thread is reassuring - the fact that you've always found the strength to go on.
🌹

The only reason I am still here is because my son needs me. I am his safe place. Even when I can’t be there I am still his safe place and he can (and does) ring me several times a week just to hear my voice. We have to be strong don’t we? We have no choice. By god it’s tough though.

OP posts:
Icedlatteplease · 17/02/2023 23:44

Sammysees · 17/02/2023 23:41

I can hand in heart say that my son hasn’t been traumatised in any way since being at the hospital. He doesn’t like it. He wants to come home. But never been traumatised.

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Thank you ❤

VerityUnreasonble · 17/02/2023 23:47

Sammysees · 17/02/2023 23:36

Oh you sound so lovely! He is in a low secure private hospital. He is nowhere near ready for discharge yet. They have said they would like him to go to supported living rather than come home. They think that would be better suited to his needs. I still work full time and even though I struggle with it - I need to sleep as well. I can’t keep him safe here on my own.

Show quote history

That sounds really positive, even if he is not ready for discharge yet they are thinking about the future and supported living is a great step to give people the opportunity to build skills with a safety net around them.

Even if you could keep him safe on your own (and I don't think that is a one person job!) supported living allows him to safely gain independence which is a gift for us to give our children.

I wish you both the best for the future and thank you for sharing your experience.

Original poster
Sammysees · 17/02/2023 23:48

Icedlatteplease · 17/02/2023 23:40

More questions.....

May I ask what age he was when he was convicted?
Have you had to go through stuff like getting power of attorneys?

Show quote history

He was 18. There are no power of attorneys. Because he is under section I have no say in his medical treatment. I provide financially everything he needs (and some of his wants too 😂). I will say that the hospital always involve me in his care and treatment but I have no rights. At some point I will have to think about a power of attorney but right now I take it a day at a time. I try not to look too much into the future.

OP posts:
Icedlatteplease · 17/02/2023 23:49

Sammysees · 17/02/2023 23:48

He was 18. There are no power of attorneys. Because he is under section I have no say in his medical treatment. I provide financially everything he needs (and some of his wants too 😂). I will say that the hospital always involve me in his care and treatment but I have no rights. At some point I will have to think about a power of attorney but right now I take it a day at a time. I try not to look too much into the future.

Show quote history

Thank you

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