On the edge and toppling off....

Hey Jodie

The church is really wonderful. It's so so tiny. It's one of those places that you go too and everytime you feel and see something different. I used to work at the school there and we went to the church for all the kiddies services - my kids had their Christmas plays, flute recitals, leavers services and all of those happy memories there. The emotions I feel inside this tiny country church are strange. It's a very emotional setting - just beautiful and steeped in history. Glad you enjoyed the photos - it's nice for folk to see what's it's like here.

Hope all is good with you and you are giving yourself time.... and breathing deep these days. Take Care.

OOOOH - my body can't move. Think someone attached me to a "swelling" machine last nite ....... everything is flaring! Hips, knees, hands and ankles. Did far too much packing yesterday. Peeps were supposed to moving in on Friday into the annexe so we had to get everything out and into the house - Mom did most of the "hard graft" whilst I put stuff in boxes to either chuck or pack. Then my buyers phoned last nite to say they were delaying for a week. Anyhooooo - they are now on their way over with all the family to do measuring and ..... stuff.....somehow I've gotta get out of bed and move. Oh Oh Oh -

not whinging.....in a lotta physical pain - but I guess it's a good pain - it's all happening even if the body won't cooperate. Moving date for me is now 1st May apparently!!!!!!! My vendor changed it on Tuesday as it was supposed to the 14th April....but his mortgage isn't sorted so....

Phone is ringing of the hook right now with R. Have just pulled all the plugs - not sure what else to do. Lots of verbal going on. He wants to go and stay over at my Moms - I said it couldnt happen this weekend. In a bit of a quandry here. He's not happy! He's pretty mad!

So...onto another day....

edit: have just spoken to The House staff - they are calling in the psych - they cannot engage him in anyway - he's been cutting and they haven't a clue what to do with him. Another manager is now on the way to house. I have to go and put my face on now as these folks will be here in 20 mins - my parents and little fella are downstairs..... ooooh ..... it's a bit bleuuuuuugh this very minute - hearts going like the clapppers!

BREATHE BREATHE BREATHE

thinking....what's coming next

Slow deep breaths, Izzie.

Thanks hun.... breathing slow and deep

K - house buyer folks are out of the way - did what needed to be done. R is being R - gosh, this kid should be a lawyer - he's so darn clever with words. Not too sure what's about to happen..... just gonna have to wait - Friday is on the horizon - so........... we'll see

As for the body....useless 100lb of rubbish cells. The mind's intact (tho that's questionable at times ) but hey.....

it's all gonna be fine!

Izzie--


Breathe. Breathe. Breathe. If you can meditate fine-- but if you don't breathe you're in trouble.

I'm guessing that "R" is not particularly happy about your move from the house where he had such a miserable childhood with such unloving parents? Is he still zonked out on high dungeon and man-child rage or could he pick out beloved possessions and momentos?

You know that if you do it....

Good for not being buffaloed by his ranting. Think of it as purging rather than as communication. Once he gets rid of the bile, he'll have room for common sense--even wisdom.

As for your ameliorated aches, that's what a Glow of Virtue can do for you. Virtue is not only its own reward, it is a panacea.

Hold your dominion.

Did anyone see the bucket of black paint that the "system" had put above the door as I opened it. Naturally, as I now go thru doors I don't always look up - but hey, when the black paint tipped over me and dripped on down I knew something was about to happen….

I need hard objectivity and perspective - and I have black paint in my eyes so I can't see clearly right now…

Thursday.

Having spent the week on and off "talking" to R, due to his dis-engagement from the care staff, we have been talking 3-way and in so-doing, reporting back to them R's feelings and thoughts (which is the way it has always been as you know). Yesterday R was able to keep his "agitation" to a level where "conversation" could take place. I then talk to the staff and they try to talk with him to help him understand.

R is completely black and white. If he is told something - he takes it as one or the other. For example - they say…."R there is a possibility free time can be extended, but you have to do this that or the other". R understands that as free time "WILL" be extended. (white)

"R we will not take you out in the car, to go free-time and drop you off in the town". R understands he will NEVER be taken out in the car again" (black)

He hears the first part. He doesn't hear the second, or the compromise that can come with it, he doesn't have the ability to look into black and white making grey and what has to be done to make it a better mix.

I'm trying to explain something that is so clear here in my head after years of this….but not managing to do that here well

Anyway. Yesterday, all week - R has been told they will NOT take him to town and drop him off for free time because of the fact he has absconded so many times. They will not increase his free time from 4 hours to 8 hours because of this also. He normally gets dropped off at 4.15pm, picked up 8.15pm over the weekend unless he is on contact.

Big long conversations about this with R - they asked me to keep re-iterating, and the need for consistency about this, which I did - for an hour and a half on Wed, with the manager hearing what was being in said and us singing from the same sheet, and then yesterday when R would talk to me calmly with the staff present this time. So. Sorted one would think!

R received a phonecall from "someone" - don't know who. He became agitated. They described him as being "scared". R told them he "had" to get somewhere by 2pm today. They did the talk about peer pressure and advised him ways of telling "someone" that he wouldn't be able to be there. Staff said he seemed very anxious, very fearful - they hadn't seen him like that before.

The last conversation I had with them yesterday, I was informed they had then agreed to let R go to town at 6pm today and they would collect him at 10pm. The opposite to what they have told him all week, and what they asked me to reinforce him all week - as he/they will use me as the conduit between them (which is fine if achieves the end result - some kind of understanding).

However, NOW - consistency - none.

They have changed the rules again - I was on the phone with R yesterday - they are in the room with him at The House - we can hear what each person is saying - so we have a 3 way conversation between us - R tells me "his understanding" - I relay it to them - they tell me what has actually been said - I relay it to R - it's beginning to work. Rules were set. They then changed them last nite and sent him spinning.

Last nite - they took away all the conversations that had taken place, all the agreements put in place. This morning - the manager of the House tells me "I am so sorry. I don't know why this has happened. I am going to have to have some very unpleasant words with my staff. Oh - by the way - R has now absconded."

No sh*t Sherlock. R doesn't know what the heck is going on. All week he's been told something - then your guys change the rules last nite - R is running scared in his head and with whoever the "someone" is. So he's gone.

The Manager is actually cr*pping himself. He says he has no idea why the staff would even think to have told R a change in plan. It doesn't make me feel better tho when he says ?'he needs to eat some humble pie!'

I can't get it thru to them. My voice is pathetically ignored still no matter how many times they have to listen to me.

The approach has GOT to be consistent. All the work done this week in helping R to understand anything - got blown out the water last nite. The Manager admits it completely, he says he can't believe it has happened. R is extremely vulnerable. He's cutting himself up again. He's internalising. He's lost in his head.

Now the thing is. Yeah. Sorry. We've heard that before and we've seen this twice before. His Dad and I know what's coming. They are beginning to say the words….. "we can't manage this". They started last week with the "we have no idea what to do for him". I tried to explain to the Manager this morning - of course the staff don't know - they need to be "trained" - they need the input from the professionals - where is that input? It's just not there. He admits it too. He's admitting the staff are out of their depth with R. Oh, and then the expression "we have never seen a child so complex as this before - so deep rooted in his thought process - who takes "processing thoughts" sometimes days, weeks, months." Yeah, but - this is a unique setting - give the staff the capability to deal with this - get the input in there. That's what we keep asking you to do - and you're not doing it. Why aren't you. I asked for them to talk the psych on Monday after he had seen R. THEY HAVEN'T DONE IT YET! WHY! The ante has been upped. Why aren't they upping their input.

They admit that R is not "bad". The recognise his limited ability to understand. They say he won't "comprehend", they believe, ?'til hes 25-30 years old. Yet, they are trying to manage and contain a 15year old - when they don't have the "professional input" they need - they keep making mistakes - and admit that - well, I'd rather those mistakes weren't being made - not when a child's life is involved. Hasn't that happened enough to R already. These mistakes are just actually "STUPID" mistakes. Not mistakes that we all make as we go through life - mistakes that they already KNOW better not to make.

His Dad and I know what's coming. They'll kick in him into touch. Just like all the others have - they keep saying there is no way he should be locked up or sectioned - they keep saying how terrible sad and frustrating it is to watch this happen to him. He has autism - he's vulnerable - and he's an angry teenager. Surely there must be a good "someone" that can help him. It's self destructive behaviour - but it's not a conscious one - after the things that he does or says - he doesn't "get it" like we do. And yes, you have to keep plugging away and hope that he will find an understanding in a different part of his brain to allow him to settle, but not when the so-called "professionals" then change the goalposts again.

He's now gone, again. The police know from CCTV he has managed to get on a bus to the town. They will waiting for him the other end. How does R understand that. To him - schools out (even tho he doesn't go to school), he figured out how to get on a bus (huge achievement in itself), he's done absolutely nothing wrong today, he's walking around the town, (ex-hub just called and said the the police didn't get there in time) - so, R is doing what the other kids are doing. Wanting to be normal - when everything in his world is abnormal. It doesn't gel together. Now the police will find him - and take him back.

What to do……………….?????????????????????????????

A meeting has been called with the police, social services etc etc etc for Wednesday - funnily enough - the House Manager wasn't aware of it!!!!!!!!!!!!!! However, it's coming…. those words….. "We don't know what to do" - so, on you go R - go be someone else's problem! The system stinks - what should I do now? Oh - my ex-hub has just summed it up brilliantly…. "he's been chewed up and spat out by the cogs in the machinery called the system"….



I need perspective please - and objectivity. There is no drama happening. Yeah, I know, it will later - but at the moment - I just need someone to listen and to try and put this into perspective. I can't do anything. It's out of my control and hands. I just need to work out what to say, rationally and concisely (which is always a problem for me) when it all kicks off. R will do whatever he is going to do. The staff/police need to "deal" and will, without emotion - but it's this time last week - and Friday is here now, and for R - tomorrow may or may not come. It's not a "soap opera" or a "drama" - it's our reality. He ended up in hopital last week - I don't know what will happen this week. Something may. It may not. It's hard watching and waiting.

Is "the call" gonna come - "the call" - the one I dread every day. Do you hear what I'm saying?

(sorry - that's all so jumbled up - can anyone make sense of what I'm saying or asking)

Black paint comes off with some 'white spirit' - I have some in the garage so, no worries.

Yes, it all makes sense -- or at least as much sense as it can given the nature of this beast. Perspective? It may be impossible to put R's situation into a rational perspective because it's all so irrational. This shouldn't be the way life is but for R and those who love him it's oh so very real. I'm fully aware of the angst in waiting for "the call". There's no way to put that into perspective. You just wait and hope and cringe every time the phone rings. Day after day after day... Not much help in helping you gain perspective, I'm afraid. But I do understand and empathize and will sit, listen, talk, wait, console, hug, and anything else I can do.

hugs!

Thanku JPB

I guess the nature of the beast at the moment is.... should one "call" not come thru - then another "call" will.

The former is the one I never want to take. The latter is the call that tells me that either he's lost, found, hurt, fighting, cut, hospital, cell, etc or...back at The House. I don't see a positive scenario right now - and I am searching hard for it. It may well be all alright. But the experiences are escalating and they all know we're on real fine line here. He's a danger to himself in that his extreme nature and extreme lack of "brain engagement" just do not come together. Most kids, teenagers - all go thru it - he's the same in that respect - but his bigger picture is so "small" and his options so limited in how he follows thru. It's beyond what even the experts can handle and I HATE hearing them admit this now.

I don't want to hear that. I want them to find solutions - not give up. That's what's coming JPB - I can hear it... his Dad can hear it - we've heard it before - it's not right! Platitudes and holding hands up in the air. That won't help him. He needs a good "someone". Why isn't there "someone" who can help. This is R. He's not bad. He's a wonderful kid - why do they keep saying they have never seen anyone so complex. Why does he have to be a kid that no-one can help. He's just R. Why can't they do something?

See now, the tears have started. I don't want it to be this way. I don't want him not to have hope. I don't want someone else to give up on him. It's like a slow death, when you're told - there's nothing more to be done. Well, there must be. Don't tell me you don't know what to do - this is my son.

He does not have mental illness - he is not sick. There is no pill to fix this. There is no quick fix either. His brain is wired differently - it can't be re-wired. They need to tap into another wired-part to find a way to help him deal with "life" - surely there's someone who can do that.

I don't want him to be the child no-one can help anymore. They have to get it right. If they don't get it right, what happens to him? Where does that leave him?

He's just R. I just want my son not to hurt. I just want him to "live" - not just be exisiting. It's not much to ask is it? Just to want your child to wake up and go to sleep - without fear, without anxiety and without wanting it all to be over every day. It's what you want for everyone - for all the people you care about and love. With your kid tho - it's more than just a want.

(I know you understand)

edit: I know - don't do the WHYs, WHAT IFs, just concentrate on today. Trying hard to do that right now. Hour by hour. Day at a time.

Right, another miserable part of the waiting game is that it gives you too much time to speculate. There's no way to now what tomorrow will bring until today ends.

Breathe.

I'm sorry this is so difficult, Izzie. No advice, just reading and sympathizing.

Checking in to read, listen, keep company.

Thanku all...

Have spoken to the Social Services. Social…ha - right!

Points I'm making - making them well on the phone, but not on here….

R been there since February.

In total - 2 meetings with pysch and R. 1 training course with staff held in Jan.

R escalating. Psych called in on Monday (2nd visit)

No follow up with The House despite me insisting this was necessary. The House Manager just isn't "managing" - it's no good just apologising now. I have just asked Social Services who is accountable here. Mistakes are being made which place my son at risk. He places himself in danger, he doesn't need mistakes to be made which make his world more risky.

The staff are good. Good people. They are not the experts. They need the input from the Manager. The Manager needs the input from the "Mental Health Experts". These experts need to see R, assess, report, input, feedback. The last reports say "R can't deal with individual therapy right now" so therefore, the Psychs need to tell The Manager, The Manager needs to tell the Staff, the Staff then at least have a chance of helping R. The lack of communication is terrible - and it's meant to be R who has a "communication" problem.

That isn't happening. Social Services, who FUND this placement, sit back - listen - don't hear - move on to the next child.

Meanwhile - R who is not being abused, or hurt by others (yet), or doesn't have people who love and care for him, who has got a place to live, who doesn't have to beg for food or clothing, who isn't left in a gutter each nite….. R - who has "opportunities" and the opposite to the above - is put to the bottom of the pile because this is "his choice". Well - his actions are choices he makes…… but he didn't choose to be this way, and he can't control his understanding of the situation, and therefore - he's is just as much at risk as any other person. But he looks "normal" - other than the cuts he has, which are hidden - and now……. His "normality" is THAT COMPLEX that no-one knows what to do. How can that be?

Opportunities are there for him to "live" - but he isn't able to take them.

Sitting here - trying to distract……. Hamsters are spinning that damn fast that I'm dizzy.

keep talking, keep advocating, keep venting, and breathe.

It's just 7pm here - still light for another hour or so. The police haven't found him yet. The staff have been told he was spotted but disappeared again! The "someone" who R is scared of is known in the town - but this person - who is older than R - doesn't live in the town. We think this is who gave him the booze last week and is offereing R 2 X E-tabs for £5.00!!!!!!!!!!!!! It's all a little "scary"! The police are doing what they can - but R could be anywhere. I sit and wait. I'm so naive about drugs and stuff - it's not a world I have ever known - I don't know what to think really. We don't think R has taken anything before - he doesn't get the opportunity ..... but now ..... well, it's all different now. And he's scared too. So far we believe he's said "NO" - but that doesn't stop them being put in something by someone else. Peer pressure and R. Remember R has not been with children or young adults for 2 years. He doesn't have "friends". He doesn't go to school. He's not street wise. He hasn't got a clue with normal "talk", leave alone any other kind of talk!!!!!!!!

The staff are worried. They knew yesterday how anxious he was. The police are worried. Social Services have all gone home for the day! They start work again on Monday!

I guess I just sit and wait.

No sightings. No nothing. Police are gonna call me. Dark now. The House staff are at The House. All just sitting and waiting now.

I'm distracting. My "second self" has come onboard the ship. That makes me so happy.

I don't know what else to do! It's going to be a long nite. Again.

It's early here. Plenty of time to sit and wait with you.

Thanku hun. It's been a long day already. Just no idea where, how, what....

Is communication with the police/House going more smoothly now?

There is little communication. I called the House, The House called the police, the police haven't seen him, the House call me, I wait.

The police are supposed to have called an hour after he goes missing. They don't. It's better they are looking for him, granted. It's been 9 hours now. Where is he? Who knows?

It's deja vu!

I just keep thinking..... you know, it's horrible thoughts. It's hard to keep positive. It will all probably just be fine.

But I can't stop the thoughts. Not since the call before. I don't want to hear those words again. I can't stop it. Or do anything about anything.

I just wonder what is going to happen. It's hard not to.

No-one knows anything.

Nearly 11pm - he was reported to the police at midday.

No-one has called me. I called The House. They called the Police. I have called the Police. Don't know what anyone is doing ...or can do.

The police haven't even spoken to me or his Dad. They said they will get someone to call me back.

What are we? NOTHING!

Why is that?

Am I supposed to go to bed and sleep and forget about it til the morning?