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Desperate for Help

WittsEnd
Hi, A new poster here.  I am hoping somebody can help to point us in the right direction as we can't seem to get any real help no matter who we turn to.
We are a family of 4, with 2 daughters aged 10 and 11.  My eldest daughter has always been challenging but since she started secondary school in September, things have become extreme.
She cannot cope with the stress of school, or relationships with other children, or not getting what she wants.  The school have been fantastic, trying everything to make it easy for her, giving her passes out of lessons, no homework, extra support etc, but for the last month, we have been unable to get her into school.
We have had several professionals talk to her, and all believe she is autistic, but she needs a formal diagnoses.
Most days my wife and I are subjected to the most horrendous verbal and physical abuse, she is regularly losing control and smashing everything she can find in the house, as well as punching, kicking, biting, scratching us both.  We both have several bruises and my wife has a really bad split lip where she was kicked in the face.  When my daughter does eventually calm down, she says she is sorry and wants to die as she doesn't want to feel like this.
Just talking about taking her to school would result in these violent outbursts and we can no longer even consider this.
We have been seeing a lady from TAMHS, and yesterday she had a meeting with all the joint services (paediatrician, CAMHS, social services, etc) to try and raise our case.  Unbelievably, they advised us that they will not accelerate our case and that we need to find our own solutions, we will be referred to the paediatrician in several months time (Advised waiting list of approx 9 months!).
I tried to get help from the national autistic society, who told me they couldn't help until we have a formal diagnoses, likewise barnardos cygnet course, parent advisor, parent to parent group support are all out of reach until we have a formal diagnoses.
We are not stupid people, we have read countless books of dealing with autistic children, and she fits the profile perfectly, but we need some further help outside of the books.
We are at our wits end, my other daughter is terrified of the daily violence, we are always having to get her out of the house and she is so fed up of being sent away to friends houses.  Rarely a day goes by without my wife and I breaking down into tears.  My wife has had to give up work and we live in fear of an 11 year old girl.  Even today, my wife took my daughter out to look at fish, she got into a rage because she couldn't buy the fish she wanted and on the way home, attacked my wife in the car, as well as destroyed the interior of the car.
We have had to call 999 on a couple of occasions, on one occasion, 3 of us were barricaded in our bedroom trying to protect ourselves whilst my autistic daughter was trying to smash the door in with a metal bar (loft hatch bar).
One day whilst being attacked, I rang social  services in tears desperate for help.  They could here my daughter punching me and the help I got was to be asked why my daughter wasn't in school and told that I have a legal responsibility to get her to school, the most uncaring response I could ever imagine.
We have tried everything to find her a way of coping, listened to her wishes, she has had her room decorated, new carpet and furniture, fish tank in it, built a den, everything we can think off but nothing works and she just wants something else.
We are no longer functioning as a family, with the daily fear, tears, loss of job, destruction of the house, all never ending, we are in survival mode with no joy left in our lives.
I am at the point that if someone told me a particular plane would go down, I would buy tickets for my daughter and myself, to end our misery and at least give my wife and other daughter a chance in life.
I don't know where to turn to try and get some help, we so desperately need the referral so we can at least try to explore other options.
We have tried the school, TAMHS, the GP, social services, and whilst most are sympathetic, they are unable to give any real support. 
We cant continue, we need medication, professional support or something to ease the pressure and misery.  I am so desperate, I would even consider putting my daughter into temporary care, but from what I understand, it would be me probably ending up in court for child abandonment. I don't know what to do, I am so scared that she will really hurt someone seriously and put them into hospital, she is very strong for an eleven year old and with the andrenaline, she can already hurt my wife and I.
Please can someone help, we don't know what to do and we can't continue to live like this, we are so desperate.
Many thanks
Parents

  • Hi Eve00675,

    Thanks for your comment.  That is exactly how I feel.  When we started to realise my daughter was on the autistic spectrum back in November, that was exactly my position.  No rewards without better behaviour.  Everyone we spoke to told us that she needed a calm space, where she can feel relaxed and go to in order to calm down.  For the previous month or so, she had been asking for her bedroom to be done as she felt is was too babyish, and I had refused.  In the end, we put in a reward system where she had to earn points to get each of the items she wanted for her room.

    Our therapist advised us that if we cant get through a day without a meltdown, then make it half a day for a point and over the next 5 to 6 weeks, she earned the points to get those items.

    The thing that really annoys me is that it hasn't worked, she has refused to go into her room apart from when she is ready to sleep or totally relaxed (very rarely).  If she has any level of anxiety, she just wants to be in the same room as us and try to create a confrontation.

    My wife still feels that we need to find the one thing that will help her to cope, for example she now wants to have a small tent in the dining room where she can go to and it be her own space.  Honestly, I don't know what to do.  I tried to use the National Autistic Society helpline, but because she hasn't had the formal diagnoses, I was not allowed to speak to any of the specialist's.

    We did have a private cognitive behavioural therapist, for a few weeks, but before we were able to build a relationship and get my daughter to open up to her, we were told by TAMHS that we were not allowed to continue whilst we are under the 6 weeks of support offered by themselves.  But to be honest, despite how brilliantly supportive the TAMHS person has been to my wife and I, my daughter refuses to see her.

    I really want TAMHS to get us onto CAMHS or to the paediatrician so we can get her the professional help she needs, but the barriers are up and we are on our own.  Guess I will have to look at the private route.  It is so expensive though, much more expensive than what we spent on the room !  Really annoyed that after paying a huge amount of tax for the last 3 decades, we are now getting the brush off.

    I do agree with your last statement that we have to be cruel to be kind.  It works perfectly with my other daughter, but creates violence with my eldest.  My wife and I don't really know what to do for the best.

    Many thanks

Reply

  • Hi Eve00675,

    Thanks for your comment.  That is exactly how I feel.  When we started to realise my daughter was on the autistic spectrum back in November, that was exactly my position.  No rewards without better behaviour.  Everyone we spoke to told us that she needed a calm space, where she can feel relaxed and go to in order to calm down.  For the previous month or so, she had been asking for her bedroom to be done as she felt is was too babyish, and I had refused.  In the end, we put in a reward system where she had to earn points to get each of the items she wanted for her room.

    Our therapist advised us that if we cant get through a day without a meltdown, then make it half a day for a point and over the next 5 to 6 weeks, she earned the points to get those items.

    The thing that really annoys me is that it hasn't worked, she has refused to go into her room apart from when she is ready to sleep or totally relaxed (very rarely).  If she has any level of anxiety, she just wants to be in the same room as us and try to create a confrontation.

    My wife still feels that we need to find the one thing that will help her to cope, for example she now wants to have a small tent in the dining room where she can go to and it be her own space.  Honestly, I don't know what to do.  I tried to use the National Autistic Society helpline, but because she hasn't had the formal diagnoses, I was not allowed to speak to any of the specialist's.

    We did have a private cognitive behavioural therapist, for a few weeks, but before we were able to build a relationship and get my daughter to open up to her, we were told by TAMHS that we were not allowed to continue whilst we are under the 6 weeks of support offered by themselves.  But to be honest, despite how brilliantly supportive the TAMHS person has been to my wife and I, my daughter refuses to see her.

    I really want TAMHS to get us onto CAMHS or to the paediatrician so we can get her the professional help she needs, but the barriers are up and we are on our own.  Guess I will have to look at the private route.  It is so expensive though, much more expensive than what we spent on the room !  Really annoyed that after paying a huge amount of tax for the last 3 decades, we are now getting the brush off.

    I do agree with your last statement that we have to be cruel to be kind.  It works perfectly with my other daughter, but creates violence with my eldest.  My wife and I don't really know what to do for the best.

    Many thanks

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