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I need to sound off!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! - Page 2 - Carers UK Forum

I need to sound off!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

For issues specific to autism / Asperger Syndrome.
When the psychiatrist talked about a psychiatric unit not being suitable for your daughter did she mean a mainstream adult unit or a child and adolescent unit? I can see that an adult unit is totally unsuitable for a young person, particularly one with an autistic spectrum disorder, but a specialist CAMH unit might be suitable.

I think that the social work manager's response is appalling, public services have a duty of care, they also have a duties under the Human Rights Act. Again the "attention seeking" and the"manipulative" make me think that there is a belief that your daughter has an untreatable disorder so they can wash their hands of her, this simply isn't the case. You could ask the social work manager for a complaints form, this sometimes makes them reconsider, if not you wouldn't lose anything by making a complaint and you might gain from doing so.

I just don't know what else to suggest, they just seem to put barrier after barrier up, if your daughter's needs are too complex for trained professionals to deal with how on earth can they expect you to deal with them. All I can say is that I'm thinking of you and of your daughter and just hoping that they'll offer something after the meeting tomorrow.
Willow, contact social services once more and ask for the details of a local advocacy service for you and your daughter. By law they have to provide one - in this case a Child Advocate. And as Parsifal says, ask for a complaint form at the same time. One more thing - ask that no further action be taken to discharge her until she has met a Child Advocate to give the advocate a chance to get involved and find out more from your daughter. That last one is a bit of a long shot but it's worth a try.

As for the rest of it:

It's only attention-seeking until she succeeds.

It's no longer attention-seeking, it's an autistic learnt behaviour.

Do they know anything about autism in social services? Or child abuse and its effects on children in general? (Double that for a child with limited social understanding)

Ask for a copy of all paperwork and computerised records on your daughter held at social services and at CAMHS. Also the hospital. You have a right under the Data Protection Act. Do it on the basis that you are requesting the papers as your daughter's representative. As she's a child they cannot charge you the admin costs. They must comply with this within 40 days. It may be the only way to find out what everyone has been doing and saying. Amazing what you can turn up this way, and sometimes it can make attitudes change.
Thank you for your help and advice, i am very grateful.
Friday was a NIGHTMARE. I mean that seriously.

About 8 professionals turned up for this meeting on Friday, the 'Familysupport worker' and her boss with no feelings. The CAMHS Pyschiatrist, a nurse from the ward lolly was staying on.
The child protection lady from the hospital she was in, and one or two more people.
I made it clear i wanted to sit in on this meeting, but they wanted to meet first without me. AFter about one and a half hours me and hubby were invited in, they had all agreed the following: Lolly was mainly attention seeking, also her Autism wasnt helping and her being a teenager wasnt helping, all these 3 things was making her so confused. I was too over anxious and i was rubbing this off onto Lolly! Lolly must take some of the responsibility for her actions. So all in all we were advised to ignore all these things she was doing, just let her get on with it, and if we don't chase after her she will come back and get the hint that we will not keep pussy footing around her.
They said to ignore completely the self harming. Lots of teens do this which is fair enough.
But they said if she disapears again, dont go running after her, just sit tight and she will come back. If she tries to do suicidal things, ignore it.
they kept on saying again and again how i was much too over anxious and i must stop this as she picks up on it, How the hell can i not be anxious with all that is going onl.
Social services said they WILL NOT help us, we dont need it, she doesnt not deserve it. To cut their words short, they feel that she is doing it to get attention and by them giving her foster care, respite care is just playing into her hands.
Pyschiatrist said, Lolly is not depressed at all. I said she must be either Schisophrenic or Bi-polar ( she must be) but they said she has no symptoms at all of these illnesses.
I asked for medication for her sudden changes in mood, they said she does not need it.
I asked for something to help her sleep, they said no. she does not need it.

So after the meeting, they said she could go home, at that Lolly ran away. No shoes on, no money, no phone, and barely dressed. All the proffessionals came out of the meeting, i told them as they walked by me, Lolly has run away, but they just nodded and went on their way.

We waited over 2 hours searching the hospital, Security were searching for her and then the police were contacted. In this time i found Lolly's phone, i read some messages she had received from the Samaritans, ( i didnt even know she had been talking to them), But from their, replies she had told them that she had planned to kill herself after she was discharged from the hospital. She said she felt this was her only option, she just did not want to live at home anymore.!! So now i was panicking, she had been gone over 2 hours, had she already killed herself, i didnt know what to do. The hospital child protection lady rang social services and then told us to ignore her and just go home. We did eventually. We sat at home for any 3 hours, by now i was really really anxious, after them telling me not to be anxious, how the bloody hell was i to keep calm, we live right next to some lakes, had she thrown herself in there. The police rang us and took all her details and her photo, we told them of places she might go to. Still no contact from any of these professionals, they had all gone home to their happy normal lives.
Well after 5 hours we sent a close friend up to the local cemetary( where we had told the Police to look) and our friend rang us to say Lolly was sitting on top of her grandmothers grave, cuddling it and sobbing ( nanny only died at Christmas) so we quickly shot up there and got her. She did not want to come home she did not know what to do with herself.
I am so angry with the so called professionals telling us to ignore her, they want to sit at home for 5 hours waiting to see if you baby had already killed herself.
All her feet were cut, she was freezing cold, thirsty, hungry, and tired.
We took her for a drive about in the car for an hour or so, ( she loves this) and then went home, she put herself straight to bed.

Later on, Lolly called me into her room, she was sobbing her heart out ( last time she did this she had cut all her arms up so again i was worried sick) but when i got in the room she said to me ' mummy i need a hug' and she literally broke down. She said she wanted to cuddle nanny, she said she told nanny ' why do i cut and hurt myself nan' i dont know why i do it.
She said she just really does not want to live at home anymore, and also she did not want to live with anyof us ( mum, dad, sister) God only knows why she feels like this.
She said no one wants her anymore, she has not got anyone anymore!!!! She said Nan has gone now, my friends dont want me, the nurses at the hospital dont want me or they would not have sent me home, and the Pyschiatrist had told her mum and dad don't want her home anymore either!!!!
I reassured her we most certainly did want her home, and just how much we all loved her.
But i keep trying so hard to work out why she does not want to live at home, i asked her if it was her sister who makes her feel like this( sister is very hyperactive) she said no, was it me, no, and i asked her if her dad upset her inanyway at all, she said no, she just did not know why she does not want to live here any more, but she just doesn't.
We are now wondering if this abuse case thats going on, if she is worried about the pervert as the police have told is he live withing a mile of our house, if she feels unsafe, but due to her Autism she does not realise she is worred. ( this often happens with things that worry her, she cannot work out why she feels worried).
So much for all those professionals saying ignore her, its attention seeking and my anxiousness. They were not here to help us, or advise us, we had never felt so frightened and alone waiting to find her.
This child needs help and she is not getting it.
I am even now thinking of leaving my husband, and renting a house out somewhere else, just to see if she would be happier away from this house, i cannot just get up and move in case she feels the same once we moved our whole house. ( we rent).
I really don;t know what else to do, we are totally alone with this, we have her home now, but are waiting for when she runs away again, or self harms again. I have not slept for days now and i feel very ill indeed. I know i have depression now because i can't sleep, eat, feel very anxious, no light at the end of the tunnel, short tempered and keep crying. I have never felt like this in all my life.
I love lolly so much, i am prepared to let her go, if she wants to live in care then i will have to let her go to keep her safe, but these professionals say she will be exactly the same if she did live elsewhere.!
I am so sorry to waffle on again, i have no one at all to talk to.
My husband has had a good cry, he says he now feels down and anxious as well, so its not just me.
One thing i am going to try is St.Johns wort for Lolly, as she is not on any meds at all.
So i am just going to sit here and wait for the next time, i know she will do it until she moves out, i have told her she can move out in 8 months time into a hostel as she will be 16, but she does not seem to like this idea, she does not want to be alone. 6 months ago my child was normal, she never did a thing like this. God only knows what has changed her so badly.
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Willow, I don't know what to say. I can only tell you that I know several "neurotic" and over-anxious mums who were "cured" when the professionals started to listen.

However, your daughter still has a right to her own advocate - this is a legal right and she cannot be denied it. I strongly advise that you request one for her.
I too don't know what to say, Lolly's treatment at the hands of the so-called professionals has been so rejecting, simply increasing her confusion and reinforcing her distress. An advocate is an excellent idea, professionals listen to advocates where they don't listen to individuals and their families.

The treatment system is predicated on diagnosis rather than looking at the symptoms and treating them, if they can't find a label to fit the individual the individual doesn't need treatment, some psychiatrists are more enlightened than others and perhaps talking to your GP and, if he's sympathetic, getting another assessment of your daughter might help.

To suggest that you just let Lolly run away and stop worrying about her is irresponsible in the extreme, most successful suicides have been preceded by parasuicides, it's impossible to accurately access risk, that's not to say that Lolly will kill herself but to say that with this knowledge for the professionals to abandon her is irresponsible in the extreme. I think that you have a complaint against both the social services department and the hospital, a formal complaint where there have been suicide attempts might just get services to take you and Lolly more seriously as well as ensuring that your concerns are on record.

Finally, have you considered talking to MIND, they have an information line and a number of leaflets which you might find useful, their website is here:

http://www.mind.org.uk

I'll think about it further and see if there's anything else I can suggest and do ask for Lolly's records, it's so much easier to fight the system when you know what you're fighting.

Thinking of you,

Annie
You might find this useful, it's the link to the NICE guidance on self-harm, if you can find ways in which in which the hospital, etc. have failed to follow good practice it will strengthen your case, it may also give you some idea of how you can help your daughter, I'm not sure what's in it, I can't even remember whether I've read it myself but hopefully it will be of some use:


http://www.nice.org.uk/guidance/index.j ... ad&o=29424
Of course, one way to deal with them may be to ask them to put in writing their advice to you, absolving you of all responsibility if your daughter is found dead.

Just see them worm out of that one. And if they do, you can point out that if they are not certain enough of their "diagnosis" to put it in writing in that way, then they should take the safer course of action and bring in support. They can't have it both ways and your MP might be interested if they try to...

But Parsifal's advice is sound and worth a try: it's all about using their own ammunition against them. Something we Brits learnt about during WW2!!
If this meeting or the earlier meeting was to discuss your daughter's care, or lack of it in this case, and called a care planning meeting, the patient, your daughter, and you should get a copy of the objectives and the means of achieving those objectives but it seems that this was an internal meeting and that there was no intention to invite you, your presence was only achieved at your insistence, but there should nevertheless be a record of the proceedings and I agree with Charles that you should either have a copy of this record or the decisions reached in writing.

I've been thinking about this and the premise that your daughter is attention-seeking could in fact be used by you to try and get them to look at the issue differently. Self-harm can be a way of dealing with negative emotions but it can also be a means of expressing the need for help where the individual is incapable of articulating this need, this could be for a variety of reasons. It's arguable, and may not apply in your daughter's case, that she is self-harming because she is seeking attention, i.e. help, to deal with her distress and has no other means of doing it, her autism could well be a factor here. By using their perception of her behaviour and then building on it, the fact that she is asking for attention/help to deal with her distress in this way merely shows that she doesn't have the means of asking directly and therefore neither negates nor reduces the distress or the need for treatment but rather, because her behaviour is risky due to her inability to articulate her need, emphasises the need for help. I hope that this makes sense? I'm tired and know what I'm trying to say but I'm not sure that it's clear.
Hello everyone, i'm sorry it's been a long time since you have heard anything from me.

Well Lolly is still alive (Thank God) but as a daughter , i'm afraid i have lost her. She finally went in to foster care in October08, 3 different foster familie's, some she liked and some she didn't. But again Social Services really mucked her about . Taking her out of one and put into another with no warning and for an Autistic child this is awful.

But as of Dec 08 Lolly moved into a childrens home! We really really did not want her to go, but this is the only way we felt she would be safe, so had to let go of our child.
Things were bad to start with, lots and lots of self harming, all over her body. Then another attempt at hanging, and lots of time in hsopital. Then over 2 months of 24 hour Mental health Nurses day and night in her room.
But she is happy now, she loves it there, she does'nt know why but she does. There are people there giving her 24 hour attention, other children who have become her friends and she has something to do 24/7. This seems to suit her as she obviously could not have all of this in a normal family setting. But it's killing me. I have lost her, she hardly bothers with us, i guess this might be down to her autism. She has no love or feeling at all anymore, she doe'snt care when she makes me cry. She has become so hard we don't recognise her anymore. She loves her Dad very much but seems to be punishing me, even though she says she isn't but it does seem like she wants to hurt me all the time. She knows she can come back home at anytime, but she never wants to live back at home. I know she gets a hell of a lot of attention at this home, and she loves every minute of it.
But me, i cry every week, i have always kissed my kids goodnight, tucked them in to bed and always told them i loved them at bedtime, now i have to do it by a text message. I hate it, i miss her so very very badly, what happened to my normal little girl. She still puts herself in danger by running away. Gets in cars with strangers and does dangerous things.

I feel dead inside and so does my husband, we live day by day but really struggle. I can't believe my little girl does not want us anymore. She has no feeling what so ever and does not care how much she hurts us.
I know i am having a breakdown and my health has gone down hill very badly. We have moved house hoping that would help Lolly, it did a bit but not enough for her to come home. We can't afford to live in this house and have got into massive debt and are going to court over unpaid bills. I would love to get away from all of this, i need a break.
We have applied to our works welfare dept to help us with a loan/grant to send us off for a break and they have refused. Because we work we don't qualify for anything.
I feel overwhelmed with exhaustion.
Your post has moved me to tears. I have no advice for you and can only hope that you find the help and comfort you so desperately need.