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re my thread disappeared.... my DS is in a medium secure unit aged 15

(79 Posts)
wannabestressfree Wed 25-Jul-12 21:54:57

My thread has disappeared!!!!
Anyway I came to update.
I have had lots of contact from the hospital today and things seem to be moving toward him coming home from Birmingham to a more local unit. I suggested one in Orpington but my solicitor has sent the paperwork for it and it doesn't do well in its reports. They would like him to attend one in Ealing which is the sister unit of the he is at now........

Suddenly I am being deluged by phone calls so Bindmans are doing there job.......

I am saddened he is still deemed as needing a forensic unit and they are not willing to downgrade him but if he is nearer I will be much happier. I think realistically he stands to spend the rest of his childhood in a psychiatric hospital.

I wonder where my thread has gone.......
Was I full?

ImperialBlether Sat 28-Jul-12 23:38:38

It must be really difficult for you. No matter what happens with our children we love them so much. I hope he finds peace and you, too.

whatthewhatthebleep Sun 29-Jul-12 02:29:42

Hello....I have sat tonight and read all of the threads from your original to now....I have so many thoughts and yet cannot find many words...just know that I offer my hand in heartfelt support and care for you all xxx

I have cried for you and your DS and this worst nightmare situation unfolding since last year before you, without feeling any real control over anything that has happened...

My DS is adhd and asd ...medications for adhd and poor sleep (that don't help)and my fear's for him are always in the back of my mind. He has been self harming on and off since he was about 6yrs, suicidal and wishing he'd never been born, that he is a bad person and deserves nothing, having strange episodes/losing time/almost like black out's, anxieties and fears/panic attacks...been to A&E on 2 occasions as he has collapsed in the street going to school and then in school...(though both times there was no dx of what was causing these and we were sent home) he has told me he hears voices...mumbling and whispering...(which have led to him running away and hiding a few times that I know about)...I am a single parent and wonder what lies ahead for us often....I know my fears and worries are real and I have little idea about how I can help him...imparting this information to his psychiatrist, etc has shed no light or further assessments for investigations and currently he is starting CBT with a psychologist next week. He is a very angry boy, rigid, negative thinking and hard to reach in many ways and I worry I am losing him. He is almost 12yrs, hitting puberty and is almost the same size as me already at 5ft 2ins (i'm 5ft 5ins) and I'm beginning to feel overwhelmed by things now....

Finding your thread tonight has me wanting to talk to people about it ...I don't feel I have anyone I can talk to in RL so I am alone with most of this except when I talk at appointments for my DS.

I will continue to stay close to your thread and gain wisdom from others who are amazing and wonderful people and have so much advice and support to offer and if I can't offer much then you will at least know you have my support and if I can help in any way, that I will.

You are an inspiration and your son is very lucky to have you as his mother...you will all come through this I am sure and find a peace and the road through will get clearer and easier for you all....time is the key and the essence of all things moving forward....

sugarice Tue 31-Jul-12 20:33:21

Hello Wannabe, how are things going?. I think of you and your ds often and waiting for the VD show August 14. Stay strong and hope you're feeling better in yourself.

ImperialBlether Sat 01-Sep-12 21:27:52

How's your son, OP? I've been thinking about him since reading this thread.

Brightspark1 Sun 02-Sep-12 21:28:03

I remember your original thread, I don't have anything useful to say But my heart goes out to you. I am amazed at the lack of support available to parents of children with MH problems, we are either seen as the problem or just left to get on with it. You just cope because you have no alternative.
It is coming up to the anniversary of my DD's suicide attempt and although she is doing well, it still haunts me.
All we can do is keep loving our DCs and trying to do our best for them, your son is lucky to have you to fight for him.

Selks Mon 08-Oct-12 13:24:38

Hi Wannabe, just wondering how things are now for your DS?

wannabestressfree Tue 09-Oct-12 20:48:31

Hi all

I know its been a while and I must apologise....... I think everything got the better of me and I cracked a bit.

Ds continues to make progress and I continue to trapse up and down to Birmingham. He has relapses of self harm and his behaviour continues to be testing but I feel he is doing well. I am not sure what it means for him in the long run and they are always so reluctant to say but we just plod on. I have put in a formal request they they move him to Kent to a low secure unit and its in the hands of the mental health commissioners so we shall see.

The hospital are still rather inflexible to the needs of the family to keep up contact eg friday we have a cpa at 9.30 in the morning in Birmingham that I will have to leave her at 5.00am to attend and miss booking his visits so I end up with 50 minutes with him............ so I complain........they apologise.......it happens again......

I spend a lot of time fighting their 'one size fits all' approach to mental health. He is still yet to go outside in the community, he cries about his lack of freedom, he misses us/ he wants to be at home.........I am not sure I would advise this as a route anymore violence or no violence........ I feel estranged from him. He lives for the visits and 15 minute a night calls as do I.......... oh its horrible.

I have had to make complaints about cruel staff/ a bullying psychologist. The list is endless.

Thanks Selks for asking. I still read the threads and pop on.......

Selks Wed 10-Oct-12 18:28:00

Thanks for the update. No need to apologise about not coming on here - you've got a busy life to lead! smile.
Glad to hear that DS is making progress. I do hope that a place nearer home can be found for him.

That's dreadful about the 9.30 meetings! As if they expect you to have to travel that distance to be there for that time....awful. All the hard work that you're still having to put into fighting his corner...thank goodness he has you but you shouldn't have to do this (but I know it's the reality of the situation).

I wish you, him, and the rest of your family well, and I wish him continued improvement x

wannabestressfree Sun 11-Nov-12 22:54:31

I know its late but I wondered if anyone could give some advice

DS is in medium secure unit for disturbed children nearly 300 miles away from us. Has history of self harm/ mental health problems. Some people may remember my old thread.

Anyway he has settled completely. No psychosis for long time. No self harm. Happy and compliant. BUT, I want him down graded to low secure and nearer home. This is backed by local social services and all other people involved except the doctor.

He has been in over a year. He hasn't been outside in months. No real contact with the outside world except an hour and a half a week with me. Whilst a nurse sits there. Its awful. He is 'written up' for infringements based solely on his aspergers eg....... ds has had poor social interaction this week'. This prevents him from going further. How can I help him?

I have a managers hearing tomorrow in Birmingham because he was beaten around the head by an 18 year old patient and required medical attention. I have put in writing I want him discharged..... this may lead to tribunal. Police were called and statement taken but conflict resolution decided as the way forward....... I completely disagree........ was told DS was being 'smart' and 'annoying' other care reciever..... ds is rather Sheldon like from Big Bang Theory.
He does annoy.... he is a pedant. But surely they should be caring for him.

So what can I do?
I have filed for him to be removed.
Mental Health Commissioners are being slow to move.
Doctor has only sourced one other unit....the wells in Ealing but its medium secure and the hospitals sister unit....and full.
How likely am I to get a Supervised Community treatment order?

Anyone?

wannabestressfree Mon 12-Nov-12 06:59:12

Bumping for morning traffic

wannabestressfree Mon 12-Nov-12 08:54:03

Bump again (sorry)

msrisotto Mon 12-Nov-12 09:04:14

Have you contacted the patient advisory liaison service (PALS)? They might be able to advise you better than here.

wannabestressfree Mon 12-Nov-12 09:15:56

I have and he has an advocate. They are helpful to a point but feel a bit like I am banging my head against a brick wall. Have an appointment with local mp next week too.

Pochemuchka Mon 12-Nov-12 11:03:55

I havent read your last thread but might be able to give you some advice but I might need some more information from you about the circumstances, his recent history, where you are, what you've done so far and the opinions of all the professionals involved in his care.

How much involvement has the solicitor had? It may be unlikely that he will get discharged or put on a CTO depending on the Doctor's reports etc but a Tribunal and HMH can make recommendations about his care. Unfortunately it's usually the money men who drag their heels about the decisions.

IME some hospital staff and even consultants tend to ignore ASD/asperger's diagnoses in the treatment instead focusing on 'real' hmm mental illnesses.
I've had to help patients in the past push and push for asperger's support to be included in their care and for staff to have a better understanding of its implications, especially in dual diagnoses
I really hope this hasn't been your experience.

I'm not going to be able to come back to this until the evening but will give it some thought during the day.
Sounds like you are a brilliant mother and your son is fortunate that he has you fighting for him.

EmmelineGoulden Tue 13-Nov-12 09:02:31

Wannabe I'm afraid I have no experience and no advice for you. But I wanted to wish you good luck at your meeting today.

I read your other thread and was really moved by how hard you are fighting for your son. He is fortunate to have you. I know things are not how you (or anyone) would wish them, but I'm sure your son is much better off than he would otherwse be because of your love and action on his behalf.

wannabestressfree Tue 13-Nov-12 11:03:09

Section was renewed for another year and they opposed him being downgraded. It was upsetting and he did so well. They have proposed a move to another medium secure unit in Ealing (the wells unit) I would be grateful if anyone has any info.

I am just fed up with clearly aspergers behaviour being pinned on mental health eg not very social able, pedantic with others, draws alone etc. And?

Not a great day

msrisotto Tue 13-Nov-12 13:04:38

Oh I'm so sorry it didn't turn out the way you hoped.

Oh wannabe, so sorry to read this sad I didn't see your original thread. you must be devestated.

wannabestressfree Tue 13-Nov-12 13:36:46

I cried and he stroked my arm and told me it would be ok :{

The advocate told us just to agree to a move as the new unit would be far less strict. They are under pressure to 'turf' in London. My poor DS. Also social services told me because of the distance [520 miles round trip] I could carry on claiming his Disability Living Allowance and now they have stopped that. It pays for visiting and clothes, art supplies etc. Feel really down today as would just like him home with us or at the very least visiting. Instead he faces another christmas in hospital were I will be barred from visiting as there won't be enough staff............

I will be ok tomorrow. Just very tired and weary

Pochemuchka Tue 13-Nov-12 13:37:08

Hi wannabe, I posted on here last night but it doesn't seem to have worked. sad

Sorry your HMH didn't go as well as you'd hoped. Do you mind me asking why they opposed him being downgraded?
What does his consultant and his care co ordinator think of this and do you think any of the reasons are directly related to behaviours caused by his asperger's?

I think one of the problems with a HMH is that they have to come to a unanimous decision for discharge etc

If you're around tomorrow i'll be at work so will have access to everything I need if you'd like me to message you about what you might be able to do?
I'd really like to help as the way patients with asperger's/other mental health diagnoses are dealt with has been a real frustration for me while working in MH.

wannabestressfree Tue 13-Nov-12 13:57:33

I just wondered whether you knew anything about the wells? Thank you for your help though.

He has been settled for a long time but there has been two incidents recently...
a. he was attacked by another resident and they blamed him for it for 'bullying'. I have to agree he is a smart arse but I am not sure it warranted the response [he had to see a doctor for head injuries]

b. He does cooking at his unit and refused to hand over a knife he was using to cut his onions [making spag bol] the new teacher reported it as a knife related incident and he has previous for knife related things. I would say in his defence that I don't believe he meant anything by this........ She shouted at him to leave and he did. He was just upset he couldn't finish cutting his onions.

I am at NO POINT excusing behaviour and I know they have to be sure but I just feel of the opinion that after several months indoors he could be allowed some concessions as I feel he is becoming institutionalised. He has no criminal history.

The managers commended him on his progress and the way he spoke. I was so proud of him but they said they can only discharge or stand by the section. It then goes to a closed hearing [I can't attend] and he can't be moved to anywhere in Kent [where we live] as they are all open units. So he is off to a 10 bed unit in Vauxhall. He hasn't been home for a year. I feel so sad.

Pochemuchka Tue 13-Nov-12 14:14:30

I'm based up north so don't know anything about that particular unit, although I'm sure I can find things out tomorrow at work.

I know you really want him home but at least moving him nearer is a step in the right direction and taking him out of where he is sounds like it might be a good thing. I'm not sure some of the things you've mentioned here are exactly best practice.
How does he feel about the idea of moving? Does he struggle with change? An I right that he has a dx of schizophrenia? How well is that responding to treatment? (Sorry if I've missed something)

One quick question, when you say they are all open units near you do you mean unlocked rehab wards or low secure locked?
Another thing you will have to do is really push the asperger's thing to the forefront. It really does help if people have a better understanding of it. It's taken over a year with one of my patients but she's finally got a care co ordinator who is experienced in ASD both professionally and personally and he's totally stuck his neck on the line to make sure she gets provision for it. He is someone who I could probably get some advice from.

wannabestressfree Tue 13-Nov-12 14:32:51

Thank you :}

He is happy to be moving although upset its not lower. He does struggle with change but I am hoping as he is settled in himself he might not find this move too difficult. The hospital think he won't progress any further there as he is fixated on moving. I can quite believe this.

He has a diagnosis of emerging personality disorder [bi polar], conduct disorder. It has been discussed he may have paranoid and complex schizophrenia but because of his age [15] they aren't really confirming this......

The units near me are locked yes but the consultant disagreed with him going as did the mental health commissioners from Kent. I do think he needs a more sympathetic care co- coordinator but maybe he will now.

I really appreciate your advice.

Pochemuchka Tue 13-Nov-12 14:33:31

Forgot to say that re: visiting costs etc. these can sometimes be worked around as family contact is very important in recovery

Pochemuchka Tue 13-Nov-12 14:59:02

Ok thanks for the info smile
What treatment has your DS been receiving while he's been in there? Has he had any support for his asperger's too?
That's something that will need to be in place when he is discharged into the community because it will arguably support him to recover and hopefully help reduce the risk of relapse.

It might be helpful to look into the sort of services that are available where you live. When you have more info about things like that you can make sure it is included in any discharge plan. That goes for knowing about the types of placements that he can be transferred to as well. The better informed you are the easier it is to fight for him IYSWIM.

Let me go away and have a think about how else this can be approached etc. currently being harassed by two pre schoolers so its making it a bit hard to think and slow to respond! smile

As I said, I can probably make some time to chat with you tomorrow (we could pm on here if you like?) while I'm at work. Let me know if/when you will be about. (I might need to interrogate you a bit if you don't mind but I'll understand if you don't want to give too much away as well because you obviously don't know me!)

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