On the edge and toppling off....

Reply Wed 29 Sep, 2010 07:44 am
((( Iz )))

Is it possible for R to have an attorney of his own? I know it's difficult to get someone to represent his interests when he won't engage. I also know how difficult it is for you to wear a clinical hat under these circumstances and not take what they say personally. Now they're taking what you're saying personally, and it really can't be about anyone but R and his best interests. He needs an independent arbiter, imo.

I don't know who would pay such an individual, or how you'd go about finding someone who would work on R's behalf (and only on his behalf) when he won't engage with them, but it seems like that's what's needed.

"Impossible situation" indeed.

Mucho hugs coming your way.
Reply Wed 29 Sep, 2010 07:47 am
That sounds like an excellent idea, to me.
Walter Hinteler
Reply Wed 29 Sep, 2010 10:17 am
Perhaps your lawyer could address the affair to the Court of Protection? (I'm not sure, if the Office of the Public Guardian has to be involved, too - it's different here in Germany and seems to be a lot easier.)
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Reply Wed 29 Sep, 2010 02:54 pm
Seconding Dutch's emotion!
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Reply Wed 29 Sep, 2010 04:04 pm
I’m not making myself clear ... of course, that’s not anyone else’s fault – it’s the words I’m not saying.

You see, this is not about me versus them... this is all and has always been about R and what is best for him

yes, they piss me off, but my fight is for what I believe R's needs are

SS don't dispute his needs, in fact, no-one does - but each time a new social worker takes over we go back a few years... and then the years catch up to when he becomes 18 - a new social worker who doesn't understand what she's up against - in the "understanding" level... and...we revert back to the lack of trust - from R and the knowledge that I have tried to fight for him - which he believes - he sees the emails now

I don’t know how to say the words without breaking – which is where I am now

i know... boo hoo

just walk away and he'll have to do it himself


He cannot write what his disabilities are - that's his mother's job - he can't say a lot of things - and hasn't for a long time but... he knows I've not been wrong too often about what he's feeling or getting people (on the ground, his carers, not management) to listen to what he was saying silently...

well anyway, there's no point in any of that anymore - all but one is gone and a new SW who knows jack about him

I posted exactly what the social worker said because what she said is correct.

Her reasons are “the law” – the specifics that is – a lot of the content of her email is incorrect – but that’s because she doesn’t know R and admits that

No-one has been in his life as long as I have and no-one knows him like I do – you may think me deluded there but that’s OK because I know it - not that I'm deluded, but that I know him

What I also know is that R’s insistence on being his appointee is because he knows that I will fight for him, that tho he despises me, he despises them more

he trusts me more and trusts them less – which is not much really because he does not trust the person who signed him into care so imagine how he feels about them

The damage done to him, and the further damage to his psyche at being in the system became more damaged because of his lack of understanding and responsibility – but when a child self harms from an early age – it’s a tough call for a parent to blame the child when they've cut themselves up

It may all be “the past” and life moves on – but not in R’s world – that hurt is as much now as it was then – when we placed him in care I told him I would never leave him – but he didn’t leave care, did he because... he was who he was - so in his mind I left him

He’s now in a bigger body – he wants to be “the same” as others – and is in many ways, but isn’t in many ways – he wants to be independent but wants someone to take care of things because he cannot comprehend a lot of things

He cannot talk to me because he has too much hurt and anger – I understand that – I wish I could explain it in words, but it makes no difference – I understand why he won’t talk to me and that's all that's important... I accept that, but no-one else seems to be able to or wants to try and understand why he won't

"talk to her" they say - he'd prolly rather hurt himself again than talk to me - which is in effect what he will do, not with a knife this time, but with making life a lot more difficult for himself

As much as I accept he won't talk with me, is just the same as I understand why he won’t trust anyone else to help him and why he wishes me to remain appointee

It matters not what I feel, it doesn't – I wish to do right by HIM – I want to help him because that’s what he wishes – but I do understand he can’t talk to me

Social Services are right – I am “legally” in the way and useless because unless I can get the info, and as SS won’t be the middle man, he cannot apply for benefits

therefore, he's up the proverbial creek

Believe me, I have spoken for about 4 hours today with various agencies (housing, ESA, DLA, including the Office Of The Public Guardian and a legal bureau... I am told this is unprecedented – exactly what the “Child Lawyer” and “NCAS” told me ... what, last year, the year before – I can’t remember

I do not have legal stature as appointee – it is an “personal agreement” – I don’t make decisions nor do I have access to his bank accounts etc... (it's not like having a POA) - I do paperwork, I push SS into doing what they are supposed to before he became an adult – which was fine (not that it did any good really) - THEN he turned 18 – now, if I am his appointee – he has to “talk” to me – he has “mental capacity” – therefore I don’t make decisions for him ... I cannot be appointee without communication with him. LEGAL END OF.

I cannot be an appointee if he will not communicate
He cannot communicate with me
SS will not be the middle man
R will not trust anyone else (well........again, words I can’t say)
He doesn’t need a lawyer
He doesn’t need protecting
He needs forms filled in which are too complex for him

(He can't even meet other people without his support worker in tow to prompt him with what he needs to say - R will glaze over)
(Who would believe how good he is at rapping a?)

Others cannot do that for him because I am his appointee
He wants me to be his appointee
He cannot communicate with me
SS will not be the middle man

and so it continues

Catch 22

Not one agency that I have spoken with today has dealt with this before

If R has “mental capacity” – which he does – he can make decisions and they have to be supported

If he can’t communicate with me, cannot fill in the forms himself and will not trust anyone else because he insists I remain his appointee and therefore legally they cannot take him to the JobCentreplus and have the forms filled in – then he will not be able to apply for benefits


Which says between the lines and what SS are saying... I should relinquish being his appointee as they will not be a third party conversation

But what you don’t see... and what he won’t understand but will feel and believe – is if I do that – again, what I am doing, is leaving him in the system – this time, on his own

And again – for his best interests – just like before

Of course I realise that many will think that because he won’t talk to me, I should leave him to get on with it....... it’s not that simple

Leaving him to get on with it will make his life so very much more difficult

I don't know peoples circumstances here - but can anyone imagine their child doing what R is doing, with autism or whatever, at 18, on his own, without family input and various strangers in and out of his life every few months declaring they will help him and he should "trust them", and when he has a family who desperately love him and wish him to be part of our lives.

It's ******* hell - for all of us

Emotionally, it will damage him further

It won’t make him grow up, or talk nice with his Mom or any of those “tough love” things that we do with our kids

He doesn’t need a lawyer – I don’t need a lawyer

SS summed it up without realising it – she was too mad at me and is new to R so would not have realised what she was saying - but it's been said often enough, in different forms


What he was saying, what she wrote to me, and what I already know, is R wants to be back to when this started for him... when he was 11

When he had a family
When he believed I wouldn’t leave him

And now the tears... if I could do that... I would do it all differently

But as we can’t turn back time – it’s not possible to make R feel better or not to be the person he finds himself to be today

So I have to do that to him again in order for him to be able to live and be financed – I have to go against his wishes and not be his appointee

The question to him would be:

“What is the worst scenario for you R? – to let SS take you to the agency and have these forms filled in and live independently OR to talk to your mother?

I know the answer.
So does everyone else.

He may not be able to do either.

The Legal Bureau gave me the name of some lawyers in London – they advised me that this would be unprecedented – insisting on an appointee who you will not communicate with. I could try and get a lawyer to represent me to force SS to act as his middle man due to exceptional circumstances ... but then you never beat the system, do you, especially in just a few weeks!

All because I wish to abide by R’s wishes...

Believe me again, if I never spoke to Social Services again, it would be a blessing - telling them all the time that they know more about him than I do if ******* soul destryoing - but it doesn't stop me hearing about him or following things up or anything - do what needs to be done and hopefully it can turn around for R - that's why I talk to them - not because I want to or want to score points... there is not score - they won when they wouldnt help us when he younger.

Now, I want to abide by his wishes, he's asking me to help (that doesn't happen too often a?) and this is a biggie - don't talk to me, just get things sorted and don't leave me on my own in this system

But then I never did before, abide by his wishes, all the times he begged me to take him out of care – this is no different. I will have to do what SS want me to... and relinquish being his appointee. He will then be able (or not) to apply for benefits.

It will come at a high price for both of us emotionally.

But I don’t expect to make myself understood on that part.

None of this is about me versus them – the system beat me a long time ago. If he would engage with someone who was ‘able’ to act for him – I would do it in a heartbeat and know he was better off for it – because then I would know that he was starting to heal from the hurt, that he was taking responsibility for where he is and what he does and what he wants from life. The less he will engage, the more he insists I do it – the more I realise how little his perception of “why” has changed since he was very young.

There's no-one in his life at all who can explain why.

His support worker will see him tomorrow morning – he has tried so hard to get R to engage with me... he describes R’s reaction in detail – it’s breaking Matt’s heart too – I think he is likely to walk away before too much longer – he can’t get through to R and ... its just too hard.

His Social worker will see him tomorrow – so I will do nothing tomorrow until I hear what happens with her.

Perhaps, after seeing what I have completed on the forms, she may decide that getting R to fill in some basic details is not too much to ask really – but, I have a feeling SS will push him now and literally “lay down the law” – we’ll see.

It’ s not easy to try and do what you think is right, when you have no idea about your child’s life except what others tell you, yet the only person he wishes to entrust to get things sorted is the person he has no contact with.

Of course, I have thought of the “payback” version of events in that if I do fill in anything – and something goes wrong, it will be my fault inasmuch as if I don’t fill in anything, and something goes wrong, it will also be my fault.

There maybe an element of that going on – his not taking responsibility

But it goes a lot, lot deeper than that.

There has been no normality in his life for a long time, no education, little outside world... and now... there’s a lot to face and he doesn’t have the ability or know-how to do it – more than that tho – it has to get done – but I will have to go against his wishes, again – else, nothing will happen other than he will be homeless, damaged and homeless.

If I do what is best for him legally and financially, I have to relinquish.
If I do what is best for him emotionally knowing that if I relinquish I am going to damage him more in his head - then I am shite.


tired, need to focus on Sboy hospital visit tomorrow - 'nother long day.


sorry if no-one gets it... just talkin'

Reply Wed 29 Sep, 2010 04:23 pm
0 Replies
Reply Wed 29 Sep, 2010 05:09 pm
((( Iz )))

Me too, hun.

Sorry if what I said hurt you - wasn't my intent.
Reply Wed 29 Sep, 2010 05:12 pm
Ah, Iz.
Just try to look after yourself, too, please.
Thinking of you, possum.
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Tai Chi
Reply Wed 29 Sep, 2010 07:06 pm
I think I get it. Quite a dilemma. Wish I had some answers.

Reply Wed 29 Sep, 2010 07:10 pm
@Tai Chi,
How frustrating this all must be, so wish I could solve your problems, can only tell you you're in my thoughts. (((Izzie)))
Reply Wed 29 Sep, 2010 07:37 pm
(((Iz-))) Lots of 'shite' for sure. So much love comin'
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Reply Thu 30 Sep, 2010 09:12 am
No, no JPB - please don't worry - I know - if getting a lawyer to do this was possible, I'd do it... R will not engage with a lawyer or advocate ... I rang a lawyer today, 2, waiting to hear back tomorrow <sigh>

i hate this week

S-boy is still off school and I'm trying to juggle work and be with him - his nosebleeds are so bad from sneezing all the time and he has a high fever - I had to work today but he phoned me in a pickle - we are awaiting our Ofsted call and had to get the data in the school computer and letters out to parents, safeguarding stuff - had to phone G to go and sit with him for an hour until i could get home - have no idea where my parents are, couldn't get hold of them


anyway, home and gotta wake S and get off to the hospital - hands and feet xrays for me and S to see consultant

i'm so tired i could sleep forever

thanku all
Reply Thu 30 Sep, 2010 09:24 am
sheesh! Sometimes I wish I had a giant umbrella that I could put over all of you to keep the crahp from raining down.

Hugs all around.
Reply Fri 1 Oct, 2010 07:43 am
It's raining heavily! <pass the brolly>

Can't think straight anymore - R is not in a good way - yesterdays "meetings" with the Support Worker and SS did not go well. SS are pressurising him to dis-appointee me - they did lay the law down.

I think his support worker is going to walk away very soon we'll see - they had a big falling out - he can't get thru to R

I don't know what to do for the best



well, Margo will be here very soon - gonna not think about it for a couple days, ok, well, not gonna do anything about anything for a couple days, it never leaves my head

just wish i could hear silence in my head

looking forward to seeing the gal from Down Under - Roast Dinner and trimmings tonight and then take S to his father's.

S has lots of tests coming up, scans, bloods, echo, physio - he'll be good tho eventually, his consultant was fantastic loved Doc Alan.

Reply Fri 1 Oct, 2010 08:14 am
Can a support worker just walk away?

It can't come as a surprise that R is difficult.

Glad Margo will be there. Won't get your mind off what it's gonna be on. But you will have a wonderful distraction.

Enjoy the dinner.
Reply Fri 1 Oct, 2010 05:58 pm
I hope you have a lovely weekend!
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Reply Fri 1 Oct, 2010 07:16 pm
It's raining heavily! <pass the brolly>

Not sure what brolly stands for but here is a possible substitute?

Not in the mood for cake? Take a double shot of whiskey!
Not in a mood for whiskey? Take a double slice of cake!

Not in the mood for either? Sorry. Got carried away.

Hope dinner went well and so will S's medical tests as well.
Reply Sun 3 Oct, 2010 12:57 pm
Psst, tsarte- THIS be a brolly!:
and one for Charlie at that! Very Happy

Thinking of you and R and S, (((Izzie)))
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Reply Sun 3 Oct, 2010 01:02 pm
The S part is good news, re Dr. Alan.

Does he have a lot of nosebleeds usually? I had them as a kid (I think it was getting hit in the nose with a rather hard red rubber ball), a doctor cauterized the spot, and never a nosebleed again.

Glad for Margo's visit.
Reply Wed 6 Oct, 2010 01:56 pm
I didn't think too much over the weekend - it was a brilliant coupla days.

Roberta wrote:

Can a support worker just walk away?

Yes, he's paid privately, no contractual obligations, on an hourly basis by SS to assist R with independent living and his emotional needs. This lasts as long as M will do it or as long as SS pay him. Ends November from the sounds of it now, despite what SS said.

I've spoken to M at length - I can hear the frustration in the voices of folk when someone has had enough of trying to get thru to R and hitting a brick wall - after all, this is a job - he's not their child... Even the people who have always gone the extra mile have buckled under the pressure...

including parents, family, friends, carers, psychs, education...

If someone is not able to engage with others outside of their egocentricity - it's no more than a onesided relationship and eventually it dissolves. Even when paid, people eventually have enough of the situation - high functioning autism can be really crahp when you appear to be so neurotypical. It's not that folk don't care about him or love him even, eventually tho, they say " 'nuff already"

Anyway, that's by the by now

R does not see his mates in the town hardly at all because he's not able to get into the town - he does have a 'friend' in the city who stays at his place a lot - but... well, my thoughts on that are not relevant - it's beneficial for his mate and i have to believe he's there for the right reasons... but as i don't know him nor have i met him - i wouldn't really know.

i spoke to a lawyer at length on Fri pm - it's hard to believe this situation is unprecedented - i must admit i'm getting a little sick of hearing "this has never happened before" about various things in our life whether it be with R or my health or S... or whatever

(golly gee, am i'm divorced yet? you woulda thought so a? but no... the court did not process it June 3rd..., it's been mislaid, how is that possible? my lawyer is gobsmacked, the court says "oops", sorry they say, you'll be divorced on Monday - so far, nothing! not that it matters at all in this life, just HOW does that happen? Nem'mind, not important at all, just another add-on)

The long and short is that an appointee is an "appointee" as a personal agreement, however, the appointer and appointee have to have communication or else it's invalidated. i could attempt to get a human rights lawyer to represent me against SS in a judicial review to force them to assist him with filling in the information required - to me this seems a totally ridiculous scenario and isn't going to happen in the next 2 weeks

then again, this whole bloody thing is a tad ridiculous, as is being on the edge and tippy toeing around anymore, this existence as me wishing to be a mother and do right by him when he will not communicate with me, tho i get why he feels the way he does towards me, is still ridiculous on the face of it and no-one, not one person can give me answers or change the face - no-one in any agency or any department or anything anywhere can tell me what is the right or wrong thing to do, they can tell me legally what i should do for R's best interest, but morally and emotionally for R, there aren't any right's or wrong's in this sh1te. No-one can make him communicate with me, no-one can get him to sign a piece of paper saying he wishes to be his own appointee, no-one can make him appoint someone else, no-one can get him to understand why everything changed when he turned 18

it's no different now then it was then - he's self harming, just without the knife - he's doing damage to himself because he's not able to control nor has the control or understanding in his head as to why or how he ended up where he is or how his body grew up and his understanding of the world around didn't and hasn't changed

the damned ridiculous thing is, i guess i get it because i know that place too

If I do nothing, will they get me the information? who knows?
If I get a frikken human rights lawyer (just how totally stupid does that sound!) it still won't make a difference to R's mindset or his mental health or his feelings towards me and if i could even buy a coupla months, still, it won't change anything, i know that now even if no-one else does - he is not going to come back to me, not physically, but mentally
If I relinquish being his appointee in order for him to receive help, apply for benefits and get his tenancy for a place to live it will damage him emotionally further for sure and i know what it will do to me - he will then be on his own in the adult 'system' and i will have abandoned him again - rightly or wrongly, the outcome will be the same

i still don't know what to do, i'm tired and cranky and being pathetically tearful again, more out of frustration and because i can't get an answer to something that doesn't have any answers

Hospital tomorrow to see rheum, bloods on Fri, hospital ortho surgeon Wed lunch at N hosp, S-boy scans and stuff Wed pm at D hosp. Work inbetween times. Doing nothing about R the rest of the time

and so it goes...

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