My Ds has been in a psychiatric hospital for 4 years

[Sammysees]

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.

You will be ok. I look at it as a good thing. If all this hadn’t happened my son wouldn’t be here. Good luck ❤️

And thank you for your comments. I feel supported living is the best route. My son? Not so much. But the hospital are already teaching him to be independent. He does his own washing, has cooking lessons, is learning coping mechanisms. I am still hopeful that we will have a good outcome.

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Oh that really means so much to me! I know this thread might slow but I hope you won't mind me reviving it now and then if I have questions closer to the time.

Thank you so much for this. I also wish you well with your DS and thank you for being open and honest about a difficult situation.

Of course. Ask anything you like and I will always be honest. It is tough. Really tough. But all we want is for our kids to be happy. If that means a stay in hospital then that is what needs to happen.

Thank you. I have support and opportunities for advice elsewhere but as this is an AMA I wanted a different perspective. I hope that's ok. I thought ANYTHING could be asked and I have been very grateful for OP's response. Thanks though for your words, reminding me what I do already know after the years of working with children and adults with SEN. I don't mean it in a bad way, more a reminder to myself that I already knew the answer to my own question! Good luck to you and yours too.

regarding the poster who was more on the negative side.im sure noone wants to scare or upset. but there is as those dealing with mental illness no a complete lacking of care and needs being met for the sufferers and their families.
its horrendous.often disgusting the way they can be treated.
previous poster has obviously seen this side.and if you follow the news and are on the inside it is very very worrying the amount of shameful,unethical often abusive treatment those on the outsdie but certainly in hospitals are being met with. only recently panarama did a program.in the news this week one hospital has been warned.the previous whole group sacking for abuse.its terrible.but we cannot shy away from these things if our lved ones are going to get the help. nor can we just talk about the side of things when a child or adult has "luckily" mananged to avoid the horrible side because sadly it is now on the side of luck when they dont.
that is not to guilt parent with no choice. how can they do any different.its anger at the people giving the treatment. its anger towards those in the centres.if your childs life is at risk what do you do?! so its not for shaming those who cant cope. or against those doing the awful things and not giving approproiate care for those with mental illnesss

@DiastasisRectiSucks

So you aren’t interested in hearing or considering Autistic voices, experiences or feelings. Got it.

This AMA was about the OPs experiences and feelings as a parent of a child in specific, difficult circumstances. It's about her voice, in this instance, which has proven hugely valuable to others.

I think that the OP did explain that her son had other struggles (anxiety and depression). Combined with autism they led to suicide attemps - and so do require hospital treatment.

I'm sure he'll make a life for himself OP. I don't work due to bipolar but I enjoy my life. He can do his history, internet etc when he gets out and enjoy his independence in whatever form that takes, even if he's in a residential unit.

@Sammysees Do you personally have any hobbies or things you do for fun yourself?

Is he allowed any leave out of the hospital with you sometimes?

I'd say he's lucky,hes being supported, I wasn't after two suicide attempts. When I tried the second time they said I wasn't a priority because I lived with my husband 😞 and he could look after me

I am so glad you have support for yourself too. I am the same as you, I probably won’t seek a diagnosis as I’m not sure what that would achieve now at such a late stage in my life but I have always been curious to know for sure I suppose.

Do you think your DS’s MH issues were co existing due to the ASD? They normally are.

Was he diagnosed after his conviction? Surely that would have been a mitigating factor if he had a diagnosis before that?

Did you try to get a diagnosis when he was younger? Did he have any support in school like an EHCP? Does he have a learning disability as well?

I have a similar age DS with ASD, a mild learning disability and associated MH issues, not formally diagnosed until 17 (not through lack of trying!) and I have read stories like yours which have terrified me. It’s quite common for young men with ASD and co morbid MH issues to end up in the justice system or as long term in patients in psychiatric units.

Do you think a specialist residential college with on site therapies might be a better transition than into independent living?

Will lack of a suitable independent living provision delay his release?

I am quite devastated for him (and you) that he ended up in this situation due to undiagnosed ASD and lack of support thereof.

There are many many negatives - probably more than positives to all mh provision in this country. As a pp said - getting a place in a psychiatric hospital is nigh on impossible even after suicide attempts. I guess after the Panarama programme and also there was another one on Dispatches, I wanted to give a more balanced view. My perception (before my ds was admitted) was a scary dark place, full of screaming violent people. It hasn’t been like that at all. If I can put other parents minds at rest that actually it’s not as bad as I thought, it may help people who have that bridge to cross in the future. Is it perfect? No. But it’s mostly always the better option.

Yes I craft. I find it very therapeutic. It’s probably one of the only times I can really relax.
Unfortunately he is not allowed to leave the hospital at the moment. He is working towards that and has ground leave. This means he can leave the ward, on his own, to walk around the extensive grounds.

Oh gosh! I find that appalling! What is our country coming to? I really really hope you are in a better place? Did you ever manage to get some help?

He wasn’t diagnosed until after conviction. We did try to see another legal team to appeal but it was denied.
Ds masked extremely well. I think because he was my only child I didn’t know any different. I just always compensated for him automatically. It wasn’t until he was about 15 that I thought he may have but he didn’t want to go down the diagnosis route. I respected his decision and it is my biggest regret in life. In hindsight I should have made him.
He doesn’t have any learning disabilities - in fact he is super intelligent. Just no common sense!
A residential college isn’t something that has been mentioned so thank you for that idea. He is like a sponge, always wanting to learn. This could be a good alternative.
I think if we go down the supported living route there shouldn’t be too much of a delay. Maybe I am being naive but I have seen other patients on ds Ward go to these frequently so there must be places available.
May I wish you and your ds the very best of luck for the future.

Sorry I forgot to answer one question. Yes, the severe anxiety and depression I think came from the fact his autism made him feel ‘different’ from other people his age. This became more apparent as he became a teenager and struggled even more socially.

this is where its so fustrating isnt it. because with adequate care and support.and early intervention etc he wouldnt have gotten to crisis point.
of course there are people who have depression and anxiety but who also happen to have autism. but when its depression and mental illness is because of the autism and therefore because of how hes been helped by those who should be doing it its horrible.
have you looked locally. i no in pockets around the country there are little charities that do things for people with extra conditions.(certain pockets of the country lol) like garden projects,allotment or nature or riding stables. perhpas there might be things like that near where you are that he could join when he comes out? maybe colleges have any programs.
there are tiny slithers of people trying to do more for autism now. it might be worth a look.
obviously hes far from that right now.
what a day it will be when he gets to go outsdie for a bit.
i can still see that face as we rounded the corner with our dog and she bounded over to her like shed never been away!

In my last role I supported a high functioning 18 year old to go to a private residential college as that would have been amazing, supportive staff, beautiful grounds and so plenty of space, lots of activities. I was so excited for him. The cost to the local authority would have been over £100k a year. It went to court and the LA argued his needs could be met in a autistic residential semi detached home with 4 others even though they were in their 40s to 60s, so no other young people.

That place was just over £1k a week and staffed by people who could not speak English well, with minimal training.

The lack of availability is down to cost. The lack of staff mean agencies are used to fill the gaps, so there are, for example night staff who might not know the people in their care.

Those living in sheltered accommodation in the community are often very vulnerable to exploitation and cuckooing ( where those who prey on the vulnerable often have substance misuse and move in and demand money etc).

The system is not ideal because we live in a market economy where services for those in need of care and support are costed. There is a limited governmental budget only covering the bare bones, no wonder it is a struggle for anyone caught up in it.

I argued for this young man's case because I could see it would have been in his best interest but LAs only have a duty of care as far as AVAILABLITY is concerned. So they don't provide spaces because of the sheer cost. One social services manager explained that they had a limited budget, and funding 1 place at a residential college would deprive others in similar need.

So you get where they are coming from.

There are residential places for child sex offenders with autism who live separately in a house with round the clock care and a staff of 4 -5 just for that one individual. You can see that councils don't have it easy either .

Staffing can be a nightmare. The op is thankful that her Ds is safe and only an hour and a half away is is lucky. Some DC are placed halfway across the country.

I am not sure what an ideal solution is.

yes and like with landlords "creating" care homes. more and more property developers are seeing the return in it and buying run down houses to make into totally inappropriate accomadation and facilities. and there wont be the funds to ccover whats needed. stepping into these places and how the members are left to live can sometimes be heartbreaking.

Does your DS have other visitors apart from you weekly and his Dad every other week? Does he socialise with others? How come you never talked about the act that most contributed to his custodial?

I just wanted to give an alternative view of sheltered housing. I don't know what kind of place your son has been offered but there is a house next to me which houses people with high functioning autism and similar conditions like fragile X syndrome. The people there are all youngish, in their 20s and 30s. There are staff there 24 hours a day and although the residents all have their own separate flatlets, they are all helped with practical activities, like cooking and washing. Everyone goes out regularly to do college courses, and have days out. Sometimes they work as voluntary staff or in supermarkets or similar.
They quite often have parties or BBQs. They seem very happy when they talk to me.

Obviously you want to find out what kind of place your son would be offered but it isn't necessarily grim.

Everything always boils down to cost. There is just not enough in the pot to meet everyone’s needs. So many young people are dying - because there isn’t enough money 😢