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

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

For issues specific to autism / Asperger Syndrome.
I am one very angry mum, i feel the need to go somewhere and have a good scream, but i can't, for one, there's nowhere to go where no one will see me, and two, they may rush me off to the pyschiatic unit!

I have put my first post in the 'new people's ' section, explaining about my 15yr old daughter with ASD, she had been playing up a lot and getting into trouble at her special school a lot.
she has started to self harm and it looks terrible, then one day about 3 months ago she took some tablets whilst at school and was rushed to hospital. To try and cut a long story short, my daughter who i am going to call Lolly to protect her name, disclosed that she had been sexually abused. Our worlds turned upside down. and still are upside down. She has had to do interviews, video interviews and she is extremely distressed. I have been off work for 3 months, works not happy with me, lots of stress at home.
Lolly then self harmed again and school insisted she go to hospital, she also said she was going to kill herself within the next few days, so no sleep for me at all as i had to constantly watch her.

We have now been away for 2 weeks out of the country, she had a great time, was her normal happy self. She's gone back to school and started to play up again, she says the teachers never listen to her and this makes her so angry. As it was her last half day at school today she really wanted to go,( it was sports day as well) but school decided they would not let her go, she had to stay home. (as shye played up yesterday) Her Family support worker, who lolly really likes and see's for rougly an hour every week, then went on to tell Lolly that if she plays up at school she will not come and see her. This really upset my daughter, she felt that as the school didnt want her in and now her support worker was saying this that she had no one.

I later on went up to her bedroom to talk to her, and found her unconscious on the floor, she had hung herself and suffocated herself. I got her breathing, dialed 999, and she was taken into hospital, i felt like i was going to have a heart attack seeing her lying there. She is so unpredictable. The pyschiatrist has sent her home today, saying she needs to be checked every single hour. Thats all she could do. No medication, no other support.
So me wanting to scream about is, where is the help. I need help, i really need help. I cannot do this for much longer. I cannot relax, i cannot sleep, i am so anxious, i have begged for respite for both me and lolly's benefit, but no, we don't qualify. My works is now getting fed up with me, i only went back to work last week and now am off again as lolly just cannot be left alone. What do ido.
I have asked for meds, so she can feel less anxious, but no they don't feel she needs them, i have asked for something to help her sleep at night, but we have to wait for an appointment to see our normal phsyc, and ask her for some. Social services took Lolly of the disability register this year, i said i did not agree to this but they still did it. They say that as she can wash and dress herself she does not meet the criteria to be on the register, but this also means that she does not now come under social services disability section, which means they do not have to give her any respite. Lolly has begged them herself for respite.
I have cut my hours down by half at work, i work just 2 days a week now and have lost a lot of money doing this, so have asked socail services if they can help me with some form of caring, for 2 days a week just in the school holidays so i can go to work, i offered to pay.
Image NO, they cannot do it. I have now arranged for my husbands company to allow him every Friday off, they are not happy with this, so i asked social services for help for just one day, but again NO.
What the hell do i do, just lose all our jobs, go on the dole and become a manic depressive. Where the hell is the help for a disabled child, and a mother that will evetually go under.
Sorry to sound off, i am so angry. I was stupid enough to think i would get some help. Lolly s still very unstable, she has now sliced through the skin on her legs as well. She is scarred all over her legs and arms.
Does anyone know if i or lolly have any rights to any form of help.

hello willow

i dont know how to help you, but i am sure someone can from
this forum, from my point of view only, reading your post,
you say you were all happy abroad? could you take another
holiday, or even think of moving abroad? i hope i am not
speaking out of turn here, but i am only trying to help,
i have read on here many times of the help that is available
regarding respite, and it is terrible.
i hope someone comes on soon to help you, and your daughter,
in the meantime, i am thinking about you,

take care
Hi Willow,

My own pc is away being repaired so only a little time on this one to try find you some help.

I dont know if you already have this information but if not may come in handy in case of another emergency.

North West Surrey Assessment Team
Surrey Children's Service
35 Guildford Road

Telephone Numbers 01483 518484

Out of Hours/Emergency Contact: 01483 517898 (Emergency Duty Team - this is the number for the whole of Surrey

The Assessment Teams offer social care services for children in Surrey, including services for looked after children and young people; children with disabilities, including respite care; child protection; Family Centres; assessments of Children in Need and support for children with HIV or Aids

How can this service be accessed? Health professional, education professional, police or public can access by telephone or writing

I know you are tired both mentally and physically but you have to be firm and demand help/respite/support before both you and your hubby crack.

Your council have a duty of care towards both your daughter and yourselves.

Also try CarersLine which is staffed by experts and has years of experience of dealing with the problems carers face. We provide free and confidential information and advice on:

benefits and tax credits
carers employment rights
carers assessments
the services available for carers, and how to complain effectively and challenge decisions.
Our freephone number is 0808 808 7777 and we are open on Wednesday and Thursday 10am -12pm and 2pm - 4pm.

Get your Dr on board,your MP,anyone at all that may possibly be able to bring some pressure to bear on social services.

Be strong
x x x
I agree with Rosemary. What they are doing is applying eligibility criteria that take no account of suicidal behaviour or the needs of carers.

They need to be told this: they have a duty of care to your daughter and to your family because if you cannot get help, the family will break down - you are all at breaking point.
Hi, this is all true, your LA does have a duty of care to support you in your caring role.
When they took lolly off their register was she in a similar state emotionally or has she deteriorated?
If she has deteriorated ask to speak to the duty social worker at your local social services and demand an assessment of needs as your daughters have clearly changed.
You must be firm or they will continue to fob you off!
Be prepared to demand assessments for both lolly and a Carer Assessment for yourself!!

It's the only way!

From personal experience, once you get your MP involved things move quicker so get along to their surgery or contact them by telephone!
Again you need to spell it out - warts and all and stress it's urgent!! otherwise, if they think you can cope, they're quite happy to just leave you high and dry! Image

lastly (((Hugs))) it's not easy doing it all, most of us here know exactly how that feels I'm afraid. Image

marie x
Thank you for all yoru replies, i am going to ring that carers help line on Monday, thank you so much for that.
Lolly has deteriorated massively since they took her off the disability register, but i was so angry that they took her off, they asked me and i said no!

I will have to wait and see what they say at Camhs when they give us our next appointment!
I am also going to tell this 'family support worker' that we both need an assessment.
Lolly is now having a stress out so have to go, speakl soon
Hi, please don't wait to the next appointment - phone and speak to social services now! Image

I left it longer than I should have and darned near burned out! Image

It's much easier once you get a bit of help, it's a struggle to set up but it's worth it!!

marie x
Just an update, my duaghter tried to hang herself roughly 3 weeks ago. I found her unconscious on the floor, frothing at the mouth. She went into hospital for just one night. The local CAMHs Psychiatrist came to see her the next day and said she felt she was ok to go home but we need to check on her hourly!!!!!!
She also said i was not to be to over anxious and to allow her to go out with her friends and to get her to ring home hourly.
Still Social Services can not help us, no respite at all, i have begged for any help, even offered to pay, but they have done nothing. 2 weeks ago i also told them i want a carers assessment, but heard nothing.
I feel so very very Exhausted, i am checking her all night every night, then still doing a normal days work, checking on her all day hourly as well.
This is not a normal life, we cannot live like this.

Well today i let my duaghter go out for half an hour, with the promise she would call me in half an hour. Well i never saw her again, she had run off and little did i realise she had taken a huge carving knife and a noose with her.
I searched all the local parks, lakes(in case she had tried to drown herself) local shops, and i was running around like a mad woman, my heart racing, puffing and panting. I must have looked mad. I eventually got a call from the hospital to say she was there, she had cut her wrists. They had then lost her so it was a case of running all around the hospital trying to find her.
I felt just pure Terror.
We eventually found her, she is being kept in hospital overnight and we are to go back tomorrow to wait again for the local CAMHS to assess her. Whilst i was there i rang Social Services and told them that when she is discharge, they can come and get her, as they have not helped us one bit, they can now help her. I said i am refusing to take her home. I don't know what else to do, no one is helping us. Try spending 3 weeks wathcing a child hourly day and night. Constantly wondering if she is going to try and kill herself today. I am feeling so very ill with all this. I feel a complete failure as a parent. Where have i gone wrong.
My child says she does not want to live at home any more, but she doesn't know why!!
I have gone through everything with her that might be upsetting for her at home, but she says she just don't know why she don't want to be here.
All i can think of is if it's because of the pervert who attacked her knows where she lives. He is being arrested this week. But i say to her, shall we move away and she says no. Its not that that is worrying her. She just does now know why she is like this.
God only knows what to do next.
People keep saying to me ' how on earth do you cope' i am NOT coping, just living from day to day, but what is the point of Social Services if they cannot help someone in my situation.
Sorry to waffle on, but i am at the end of my tether now, not sure how long i can cope with this.
Any advice would be very gratefully recieved.

Willow, I've responded on the other thread, and that advice is still sound.

However, you've gone into more detail here.

As your daughter is on the autism spectrum you will be fighting a really tough battle. Chances are that you're right that it's about her attacker knowing where she lives. As a result, she's terrified of being at home. But being on the autism spectrum she won't want to move house because that is a big change. She may, in the short term, even go through more stress over the move. So the only escape is the one she's been trying.

Sometimes the anticipation of change is more stressful than the change itself. How does your daughter cope with change when it is forced on her? For example, you've told her you're having fish for dinner but then when you went shopping you bought lamb instead?

If she copes better with that than with changes that she knows are coming, it may be necessary - if you think moving house will help - to find a new home without her knowledge until it's time to start packing.

All I can think of at the moment - except to say that maybe if you've followed through on the section 20 of the Children Act 1989, moving before she returns home may be an option: no stress about having to pack, either.
Well Lolly is still in hospital. I waited all day yesterday for Social Services to ring me and they didnt. I rang them at 5pm and spoke to the boss of our social worker. He was just offhand and down right rude.
He said he hadnt rung me back as he had just forgot about us.
I told him that they MUST help us, we cannot manage nor cope anymore. He said there was no law that says they have to help me, just what exactly did i want,. I said respite, he said NO. I said ' somewhere for Lolly to go, he said NO, i said some sort of club for her to go to as she is a special needs child, He said no. I then said that there is some law that you have to help us and he said NO THERES NOt.

He words to me where ' you are not laying this responsibility at my door'. !!
We are not prepared to take her on, there is nothing we can offer her, you are her parent you have to deal with it. He said the socail worker we currently have is not a qualified social worker, ( she is a family support worker ?) and he says that he is worried what effect this is having on HER!!! not my daughter, so he is now even thinking of pulling this family support worker out. This will devastate my child.
We had a meeting at the hospital today with the head psychiatrist who said that she feels we need to take lolly home, the only place she can go is into a pyschiatric unit, and she said she feels very strongly that this is not the place for lolly. But this is all she can offer, Lolly says if she comes home again she will just do this all over again.

there is a meeting tomorrow at 11am, for the professionals only, i have made it clear i want to be at this meeting. Social services are attending, but this rude boss said he is going to make it clear that he can offer nothing. He says he feels my daughter is very manipulative, i don't understand this lolly is a very quiet reserved child, but he feels she is just attention seeking. She may be attention seeking to an extent, but as the psychiatrist says, due to her Autism she may just get it right next time and completely kill herself.
So i am to bring my child home tomorrow and sit and wait until the next time she tries to kill herself. I have not slept for nights, i feel very down now, exhausted, no interest in anything.
How the hell do people cope with all this.