advice needed desperately regarding social services

[wannabestressfree]

I am desperate for some advice and wondered if anyone could help......

I have three sons. 14,10 and 7. My oldest is aspergers and ADHD, self harms daily and has had two stays in mental hospitals. On sunday he attacked me with a knife in front of my middle son. He didn't hurt me but obviously it was very scarey. He then absconded {he does this a lot} and eventually the police took him to hospital.

A house officer phoned me in the morning and said he would be requiring inpatient treatment but he is medicating at the moment [he is on a childrens ward} and so they have reversed the decision and say he is fit to return home. He self harms daily and his special education school has told social services they are refusing to have him back. I work full time as a teacher.

I told social services I wouldn't have him in the house......... this is after years of asking for help and they have phoned today and said they will give me respite for a week by placing him in foster care in our old home town. I cannot believe they would do this as this is where he absconds too and drinks and was basically told 'tough'......... no other foster carers would take him due to his mental condition. The social worker insisted I tell my school they were dealing with us {head was super supportive} and said they would be looking at the other children. I am so upset as I just want some help.

He will stop taking his medication when he comes home, attack the other children and roams in and out of the house. We are all exhausted.

So advice please............ do I take him back tomorrow or allow him into foster care that I know is not the right place. I honestly feel like they are emotionally blackmailing me..................

Hope you're okay wannabe- I'm glad that ds seemed settled where he is - that must be a load of your mind.
I agree with Mary that there are positives. Now that his needs are more clearly understood, he can start to get the specific help that he needs so that he can begin to get better. It must make it so much harder that you received this news on his birthday though. Massive hugs wannabe x

Hi Wannabe

Sorry (((hugs)))

You know this psychiatrist who has dx your ds is he specialist in ASD? Because a lot of psychiatrists are not. Make sure that whoever gives the diagnosis is specialist in area because the negative symptoms of schizophrenia are same as ASD ....what are the positive symptoms? Is it one off psychotic episode or full blown schizophrenia? 25 percent of AS develop serious mental illness so their is a link their. However schizophrenis is not a disorder it is an illness and can be managed with medication sometimes really well clozapine as other poster mentioned is gold standard in terms of treatment and CBT also.

It also doesn't mean your ds will have another episode when better. Rule of thumb five yrs clear of symptoms and often person will not have another relapse again.
You sadly now have a dual diagnosis but will positively give your ds the right to one of those school/hospital that have the best therapy/resources needed for a dcwith dual/complex illness and condition.
I would start your fight ASAP as you know LEA will refuse to the best which your ds needs and then it takes over a yr with tribunal however with state of play authorities may just give ds what he deserves without a fight. The placement I mentioned in earlier thread us ideal for dual diagnosis.
Sorry to discuss this now but it will give you something to focus on to distract you from the reality to help you cope, I knowa man with dual diagnosis it is not the schizophrenia is the issue it is the sensory/anxiety which is part of AS that torments him more.
Mental health know very little about ASD it is hardly in their training and they they junk could be someone responding to voices ishyperacusis. So many AS people wrongly diagnosed.
On other side of coin early diagnosis is good for early intervention. Also as mum when you remember ds not knowing re AS before diagnosis it is a relief once known, as now you can start fighting for what ds needs CBT, early intervention awareness and keeping ds settled (as in best environment) will all add to keeping ds well in the future.

My own ds possible schizophrenia onset when reaching teens and I am aware that to keep him secure/settled just like with ASD issues just as important with schizophrenia. Sounds like he is much happier and getting the support to gain self awareness which is great...ds is in right place so please try and rest knowing he is applied and settled!

junk think is hyperacusis

Blasted auto correct!

applied happier

Double blast

Sorry wannabe

Just a couple of questions sea based on what you wrote.....
My DS seems to think he will stay in hospital until he is better regardless of how long this takes and then he can come home and go to college. Is this pie in the sky? Will he have to remain in some sort of residential community even post 16/18/older?

I need some advice with regard to what is realistic for him. They are saying leave won't be discussed for 8 months + so I can see him being over 16 before he leaves.

His unit is a centre for excellence for autism and all the staff are ASD trained. That's what will keep him there.

Hi Wannabe

My DS was misdiagnosed with paranoid schizophrenia (by an incompetent Psychiatrist - long story).

He was 15 when he received that dx. I was told that dx is extemely rare in a young person and shouldn't be issued until every possible alternative dx has been explored. I was also told that it should take months of observations to arrive at that dx (not the 20 minutes it took the dickhead psychiatrist who saw my son). As it turned out he actually had Aspergers.

After being failed by the NHS with this incorrect dx I saought a private dx and consulted an eminent Professor who undertook the re-dx. I don't want to upset you but he told me that paranoid schizophrenia was actually 'total madness' and that he knew DS did not have that illness as he would have been unbale to sit through and contribute to the reassessment process if he had PS. Your DS managed to get himself back to the WY Unit. Could he have done that if he had PS?

Asperegers and PS can present with similar behaviours - but triggered by different causes. The example that is trotted out is that if you ask a person with Aspergers who takes things literally 'Do you hear voices?' he will answer 'Yes', because taken literally everyone who can hear can hear someone's voice. However this can then be misconstrued that the person hears voices and is therefore psychotic. The NHS Psychiatrist who mis-dx'd DS had very little knowledge of Aspergers - he couldn't even pronounce it properly . His specialism was psychosis and he dx'd that as that was what he was accustomed to seeing.

And I've mentioned Piers Bolduc before - another person with Aspergers who was mis-dx'd with schizophrenia.

You wondered how long your DS would be in hospital and what the outcome would be. When dickhead Pyschiatrist mis-dx'd DS he prescribed Risperdal and DS stayed at home - not in hospital. Of course that may be because as well as mis-dxing he also failed to follow the correct course of care - who knows?

But I would be very sceptical about accepting PS as a dx given the level of knowledge out there, even in the Consultant grade, about AS/ASD.

I think I would be asking for an independant dx by an eminent Aspergers/ASD expert.

Best wishes

I know that it is unusual to have this diagnosis but there are facts that they are taking into consideration
My DS has a long term diagnosis of Aspergers and this is not being denied
He took resperidone and sereoquil for two years and was still psychotic, refused medication, cut regularly and was intent on killing himself. He was monitored then, had inpatient treatment and outpatient.
And no point have they seemed to want to diagnosis him schizoprehenic, if fact the opposite. They understand what it means for him.
The voices he hears come out of the walls, he sees black spirits and they torment him in different names one being Josh. He can't sleep and this can go on for weeks.

This time I don't doubt what they are saying as they presented pages of evidence to discuss with me. The complexity as far as they are concerned is what is mental health and what is Aspergers. And they need the time to pick it apart. Its the severally disturbing aspects of his behaviour that they are attributing to schizoprehenia.

And his ability to get back to the unit was because he was 'cold, tired and felt ill. And people were grabbing him'.

I don't know. I really don't. I will fight from him but I think they might be right. I read the Piers Bolduc case and that really isn't my DS.

Very quickly as in middle of Easter Madness - schizophrenia is no longer the 'terminal' diagnosis it once was. I've worked with lots of young people and adults with schizophrenia and other psychoses - all have retained or regained a level of 'normality' (whatever that is!) and have gone on to lead happy, stable and satisfying lives, albeit some in an unconventional manner.

I KNOW how devastating this diagnosis can be - but I promise this is far from the end of the road, and a long way from a life in an institution. As I said in my PM I wish I could tell you it won't be a rocky road - it will. But it IS one with light and hope xxxx

Wannabe I am so glad wet shared that experience as it can happen! I know a fantastic professor in both fields who would be able to diagnose for sure. But I am not sure if he is retired now?
Sleep deprivation can induce hallucinations. Just a thought...but 'behaviour' what do you mean please describe?
The cutting and suicide is not psychotic. The only bit is seeing black shadows...even voices from walls could be hyperacusis? You see you have two ends of sensory one end is the what you see with ASD with hyper and hypo sensory you then have hallucinations at the other end. In the middle is normal. Anyone at anytime can slide up and down this sensory scale. Schizophrenia is the opposite end of ASD. They are cousins in terms of symptoms. That is why in 1911 'childhood schizophrenia' was the name for ASD initially as it was the same symptoms.

Wet makes excellent examples of how misdiagnosis can happen.

As far as aftercare goes Wannabe when some is discharged after section 3 they have something called section 117 aftercare. It is planned their discharge and monitoring continues.

When your ds is 17 he will leave child psychiatry and go to adults section....depending on trust some do keep them until ds is 18yrs. But the condition if the section remains the same. Once section is lifted or never reapplied then ds can walk out of hospital no problems and go home. But this will be when ds is well enough. Someone cannot remain on section 3 if they are no longer risk, il, taking medication.
But don't worry before this they do lots of leave to home/future placement.

If your ds becomes well, not risk and takes meds their is no reason he can go to college or return home!

But wannabe IF this is schizophrenia? He didn't respond to meds before (he could be drug resistant or NOT psychotic)
aSD is far worse than schizophrenia in terms of behaviour.
Btw have ruled out epilepsy tumours thyroid infections etc?

Also some of these private schools like one I told you about will be able to accept ds on Section 3. although it is important ds remains in MH setting until all assessments and stability for at least 3-6 months. If you want me to link one school I thought was appropriate please ask.
I think that getting the right environment will help the most and ds is showing signs of improving already this is because he is in right supportive environment nothing to do with meds. This tells me then it is the Aspergers not a mental illness as ds would still be as bad as he was in other place as no change to his medication. Very interesting meds made him worse possibly because it is the other end of the scale.
Don't forget your ds has been moved so much and learnt a lot from unsuitable role models at forensic units etc he is v bright and can be several steps ahead in controlling everyone.
I personally think ds needs to be somewhere with a behavioural therapy attached. You need to get SEN statement changed as soon as you have diagnosis then appeal for best place. However this should be done with support of consultant psychiatrist...all agree on placement then you may avoid tribunal.
The only reason I worry about ds diagnosis is that if they are wrong it is hard to get diagnosis changed. The diagnosis however will access MH/school unit.
Now is good time to appeal with inquiry as you can use their failings to show very supportive environment is needed, which it is! Also somewhere closer to home.

Thanks both of you that was very informative. I would appreciate any links to schools (I have looked at Cambian
But have been told he has to be settled)

A lot of what you are saying makes sense. I agree he seems to be doing better in a more supportive environment.

I know it was discussed that he be looked at for epilepsy as I have it mildly (had status when I was pregnant) I will chase that up. What you have all written I will have a long think about and use when I
Email the consultant.

Thanks again and I hope everyone had a nice easter.

I hope you've managed to get some rest, honey.

May I ask you to please clarify a point of information for me? Some time ago you mentioned that your ds has had '46 placements' and that he had been in 6 mental hospitals in the last 18 months.

I'm assuming that his current stay is no.7 but are his hospital stays included in the 46 placements and what were the nature of those placements? Have you included the number of schools he's attended and were any of the placements residential or foster care?

Will PM you Izzy

It was very relaxing and was lovely to chat to DS last night who was missed. He seemed very happy and relaxed and looking forward to his first day of school today.

To clarify as I have said to Izzy [and i am sorry if I misled anyone] DS has been in six hospitals, three schools, a behaviour unit, alternative curriculum and an EBD school. I am sorry if anyone feels I misled them. I really don't remember saying 46. Probably had my rant on :{...........

really pleased you have had a rest and that your ds is more settled,poor kid, my heart goes out to him having all this to deal with. i don't have any such insight as others just wanted to say your'e a trooper!! your kids are lucky to have a mother like you, really hope things keep improving for you . best wishes xx

Thanks Alien. I have to be honest the placement geographically is not ideal but the sounds happier, more settled and excepting that he needs to cooperate to get better. When I say cooperate I mean go to group and have an exceptance of mental illness. He has always shrugged off any attempt at this.

When I spoke to DS last night he was telling me about a boy [17] who has been there two years who is now in hospital with a medical problem that has caused his mental health issues. Ds was very vague on the whys' [he is 15 after all] but said he was having steroid injections. It goes to show sometimes it is medical.

I'll pm you too, wannabe.

Back in December of last year on p.13 you reported a conversation you'd had with a social worker who "said although he had been in 48 placement he wasn't LAC as he is now on a section 3".

Most probably because I need a trip to specsavers I read that as him having been in '46 placements', and I apologise for any confusion caused by my misunderstanding of exactly how many different educational/foster care placements/mental health hospitals your ds has experienced at the age of just 15.

Would it be correct to say that your ds's hospital stays came about after the 3 schools, behaviour unit, alternative curriculum, and the EBD school (was that residential or a day school?) had excluded him?

And is it also correct to say that, apart from the one foster placement of extremely short duration you referred to when you first posted and with the exception of his hospital stays, your ds lived in the family home?

When was he first admitted to a hospital and what triggered his admission?

Sorry i meant a 48 hour placement...... probably should have explained that.
DS was never excluded from EBD school, it was a day school. In fact as far as I know he is still on role. They were just not equipped to look after him mentally. He was cutting at school and going to school in a state.

Ds has always lived with me yes.

It funny you should ask when he was first admitted I have just received his mental health file from the CPA. He was first treated by CAHMS feb 2011 and admitted may 2011. 'He had a two week history of low mood, self harming behaviour in the form of cutting and suicidal thoughts stating he wanted to hang, shoot, stab and cut himself'.

His report is not cheery reading :{

I also came home to a lengthy apology letter from the team at the Bill Yule
also a client letter from the solicitor with a copy of the letter they have sent SLAMM and those in charge at the Maudsley. It doesn't say much just asking them for their policy on restraining children, a copy of his record etc.

I wish I could post it on here. They are are very sketchy on the detail with regard to the 'escape' and refuse to comment but they are apologetic. I am forwarding it to Bindmans.

I feel really grotty, agitated and upset tonight. I wish life could be 'normal'......

It is there is always so much to think about........
today I have
dropped 2 ds's to breakfast club
taught 5 lessons
run the lunchtime club for aspergers/ children with social problems - lots of tears, problems and mmmmiiiiisssssss
had lengthy chat with mum over DS
chat with DS who needs an aerial for his tv and would like it yesterday
spoken to solicitor several times
am organising author event at school
been messed about by exh over access at weekend [he wants less which means I will struggle to see ds]
cooked tea
did homework
put boys to bed
had to take tramodol as crohns is bad due to stress so have palpitations and feel agitated.

Am juggling too much in my head and am running out of headspace........