Discussion
New series starting soon on BBC which might interest some:
http://www.bbc.co.uk/mediacentre/latestnews/2015/t...
http://www.bbc.co.uk/mediacentre/latestnews/2015/t...
just stumbled on this topic. umm yes. exact same behaviour as others have listed. daughter now 11 with aspergers.
Fek what a struggle to get anywhere with the school/council etc.
I can see that you all have been there and done that by reading the posts. Right from a baby we could see she was different to her twin sister. The last 5 years in particular have been fekking awful - almost, very almost tore our family apart. Wife is pretty much on a mental breakdown and ill with it all.
Slightly better the last 6 months by blimey. Getting a diagnosis has helped change my view and getting help for her which is slowly helping.
Hats off to you ladies and gents - its a tough cookie to deal with.
Fek what a struggle to get anywhere with the school/council etc.
I can see that you all have been there and done that by reading the posts. Right from a baby we could see she was different to her twin sister. The last 5 years in particular have been fekking awful - almost, very almost tore our family apart. Wife is pretty much on a mental breakdown and ill with it all.
Slightly better the last 6 months by blimey. Getting a diagnosis has helped change my view and getting help for her which is slowly helping.
Hats off to you ladies and gents - its a tough cookie to deal with.
Edited by superlightr on Thursday 10th March 15:29
I am f
king raging right now. Just rang the gp to find out why we have not had our urgent CAMHS appointment yet after 2weeks (guidelines suggest it should be 72hrs). Receptionist gave me the number to ring to chase it. I ring only to discover her referral has been rejected!!!! WTF???? What the hell does it take for them to accept us, obviously several suicides attempts is not enough. I am so scared right now. She was in a bad place again yesterday, I don't have the skills to keep talking her down.
Waiting for gp to call me. We desperately need help.
king raging right now. Just rang the gp to find out why we have not had our urgent CAMHS appointment yet after 2weeks (guidelines suggest it should be 72hrs). Receptionist gave me the number to ring to chase it. I ring only to discover her referral has been rejected!!!! WTF???? What the hell does it take for them to accept us, obviously several suicides attempts is not enough. I am so scared right now. She was in a bad place again yesterday, I don't have the skills to keep talking her down.Waiting for gp to call me. We desperately need help.
AMLK said:
I am fking raging right now. Just rang the gp to find out why we have not had our urgent CAMHS appointment yet after 2weeks (guidelines suggest it should be 72hrs). Receptionist gave me the number to ring to chase it. I ring only to discover her referral has been rejected!!!! WTF???? What the hell does it take for them to accept us, obviously several suicides attempts is not enough. I am so scared right now. She was in a bad place again yesterday, I don't have the skills to keep talking her down.
Waiting for gp to call me. We desperately need help.
AMLK king raging right now. Just rang the gp to find out why we have not had our urgent CAMHS appointment yet after 2weeks (guidelines suggest it should be 72hrs). Receptionist gave me the number to ring to chase it. I ring only to discover her referral has been rejected!!!! WTF???? What the hell does it take for them to accept us, obviously several suicides attempts is not enough. I am so scared right now. She was in a bad place again yesterday, I don't have the skills to keep talking her down.Waiting for gp to call me. We desperately need help.
I have no idea who else you can speak to to get help so this suggestion may be in the wrong direction. The main thing to suggest is to perhaps email your council to ask for urgent help - get something in writing to them as that tends to get some arse covering. Do the same for the the GP and CAMHS in writing.
Was the reason given becasue when your daughter was at the GP she did not actually say about suicide? Can you secretly record her at home during a talk and then use that to help get a referral. Can you go to the local hospital A & E for an assessment?
Hang in there. I presume she is at school at the moment. When she gets home can you all go out for a walk (spinal op I know) can a friend take her somewhere to help calm things - For my daughter that can help chill her, separating her from her sisters and giving 1 to 1 attention helps her as well.
Im sure you do all of these and more but just giving a scatter gun approach to what we do at home. No way telling you how to suck eggs as I dont know what works for your daughter.
A small space for her to hide in ie a pop up tent in her bed room, distraction techniques work quite well just talking to her about other things even if she is silent/hiding in the cupboard will eventually help her calm down. We have a friend with a small dog which calms her (yes frightened of dogs generally as well but curious about them as well)
So distressing for you. My wife has the violent/abuse aimed at her, Im lucky that I dont so much and thus try to distract to calm things.
As said hang in there. I know its also very draining on you as well.
Edited by superlightr on Friday 11th March 12:12
Thanks for your support. I refused to give in. Our gp has been great, she rang me as soon as she got my message. She was appalled and rang CAMHS to complain. We have since had a consultant from CAMHS ring us and apologise. Some eejit thought she wouldn't benefit from their services!?! (we don't need mental health services, I had just left Anna at school in complete meltdown mode, but that doesn't need mental health support!) We now have an appointment and he would like her to start a course of weekly CBT sessions starting after Easter.
Why do we have to fight to get the help we need? I'm sure you all understand the frustration.
Why do we have to fight to get the help we need? I'm sure you all understand the frustration.
AMLK said:
Thanks for your support. I refused to give in. Our gp has been great, she rang me as soon as she got my message. She was appalled and rang CAMHS to complain. We have since had a consultant from CAMHS ring us and apologise. Some eejit thought she wouldn't benefit from their services!?! (we don't need mental health services, I had just left Anna at school in complete meltdown mode, but that doesn't need mental health support!) We now have an appointment and he would like her to start a course of weekly CBT sessions starting after Easter.
Why do we have to fight to get the help we need? I'm sure you all understand the frustration.
Its a struggle thats for sure. Getting a "statement" for the school and extra help is a fight and so much red tape. They really dont want to give the help do they. So many blocks and turns and hoops to jump through.Why do we have to fight to get the help we need? I'm sure you all understand the frustration.
Its sunny outside - see if you can sit in the sun for 10 mins in a coat with a coffee and empty your thoughts. I go to my greenhouse with a coffee (even if its dark with a torch- the plants are quiet most of the time and sit for 10 mins!)
superlightr said:
Its a struggle thats for sure. Getting a "statement" for the school and extra help is a fight and so much red tape. They really dont want to give the help do they. So many blocks and turns and hoops to jump through.
Its sunny outside - see if you can sit in the sun for 10 mins in a coat with a coffee and empty your thoughts. I go to my greenhouse with a coffee (even if its dark with a torch- the plants are quiet most of the time and sit for 10 mins!)
It certainly is a struggle!Its sunny outside - see if you can sit in the sun for 10 mins in a coat with a coffee and empty your thoughts. I go to my greenhouse with a coffee (even if its dark with a torch- the plants are quiet most of the time and sit for 10 mins!)
As for coffee in the Sun -haha- I live in Scotland and it is raining!!! Have just had cuppa with my husband though.
Another positive - I just rang my boss to say that my daughter will be having weekly treatment (didn't go into detail as she doesn't understand or support depression) and offered to change my working days to accommodate this if needed. She said not to worry about it, we can sort something out so I can have whatever time in need off.
Thanks again, here's hoping everyone else is getting on ok.
AMLK said:
superlightr said:
Its a struggle thats for sure. Getting a "statement" for the school and extra help is a fight and so much red tape. They really dont want to give the help do they. So many blocks and turns and hoops to jump through.
Its sunny outside - see if you can sit in the sun for 10 mins in a coat with a coffee and empty your thoughts. I go to my greenhouse with a coffee (even if its dark with a torch- the plants are quiet most of the time and sit for 10 mins!)
It certainly is a struggle!Its sunny outside - see if you can sit in the sun for 10 mins in a coat with a coffee and empty your thoughts. I go to my greenhouse with a coffee (even if its dark with a torch- the plants are quiet most of the time and sit for 10 mins!)
As for coffee in the Sun -haha- I live in Scotland and it is raining!!! Have just had cuppa with my husband though.
Another positive - I just rang my boss to say that my daughter will be having weekly treatment (didn't go into detail as she doesn't understand or support depression) and offered to change my working days to accommodate this if needed. She said not to worry about it, we can sort something out so I can have whatever time in need off.
Thanks again, here's hoping everyone else is getting on ok.
AMLK said:
Lol!
Just been for a walk round the village with Anna in the rain - good times. ??
good to hear. I presume it was 1 to 1 time. Walking helps our daughter as well, get a chance to hold her hand as well and make up fun stories or ideas about things. I will ask her why is that tree leaning? she will say an obvious answer such as it grew that way or the wind blew it, I ask her for a more fun answer and at first she could not do it, so I suggest like an elephant may have sat on it etc. and we have a walk like that trying to get her to use her imagination which is hard for Asperger's to do but they can (my daughter can anyway) with practice !! Just been for a walk round the village with Anna in the rain - good times. ??
Thanks oldbanger, hope you are feeling better and are in less pain.
Good day so far. Took Anna swimming with a couple of friends and they had a great time. Just chilling now.
Can see light at the end of the tunnel now.
Hope everyone else is getting on ok.
Thanks again for everyone's support, it good to know I am not alone.
Good day so far. Took Anna swimming with a couple of friends and they had a great time. Just chilling now.
Can see light at the end of the tunnel now.
Hope everyone else is getting on ok.
Thanks again for everyone's support, it good to know I am not alone.
Things are never easy unfortunately.
We had the inevitable meeting with the school today - we were encouraged to think about "alternative strategies" if things do not improve rapidly - in other words, the message was clearly that we need to find another school for September or they will take matters out of our hands.
So now we are in a bit of a quandary. We have a diagnosis of ADHD but also significant scores on the ASD tests but insufficient for them to give him an ASD diagnosis. We are convinced that it is not ADHD (or not solely ADHD) - so how on earth do we choose the correct school - that is if we even get a choice???
Although he has a diagnosis, he does not have an ECHP (and no chance of getting one before September) so there will be no additional funding available. This seems to close the door to the specialist schools near us so we are left with either the local comp -a very good school but with 1,500 pupils where he could easily just disappear off the radar and way bigger than any school he has ever been in before - or paying a fortune for a fee paying school with specialist provision for special needs.
The decision is even harder because he really has no interest in school whatsoever. This may be because of ADHD/ASD and now he has a diagnosis, things may start to change. Or, it may be that he really cannot care less about school and nothing is going to change that - in which case, we would be wasting a fortune if we send him private.
I think I just need to speak to a few schools and try to get a feel for what they are like - it is so difficult to tell as they all have fantastic sounding policies in place for SEN but this rarely seems to be carried through into real life!
We had the inevitable meeting with the school today - we were encouraged to think about "alternative strategies" if things do not improve rapidly - in other words, the message was clearly that we need to find another school for September or they will take matters out of our hands.
So now we are in a bit of a quandary. We have a diagnosis of ADHD but also significant scores on the ASD tests but insufficient for them to give him an ASD diagnosis. We are convinced that it is not ADHD (or not solely ADHD) - so how on earth do we choose the correct school - that is if we even get a choice???
Although he has a diagnosis, he does not have an ECHP (and no chance of getting one before September) so there will be no additional funding available. This seems to close the door to the specialist schools near us so we are left with either the local comp -a very good school but with 1,500 pupils where he could easily just disappear off the radar and way bigger than any school he has ever been in before - or paying a fortune for a fee paying school with specialist provision for special needs.
The decision is even harder because he really has no interest in school whatsoever. This may be because of ADHD/ASD and now he has a diagnosis, things may start to change. Or, it may be that he really cannot care less about school and nothing is going to change that - in which case, we would be wasting a fortune if we send him private.
I think I just need to speak to a few schools and try to get a feel for what they are like - it is so difficult to tell as they all have fantastic sounding policies in place for SEN but this rarely seems to be carried through into real life!
We paid privately for the diagnosis (numerous)and also ongoing 'therapy' for our daughter. We could have afforded to pay for her to go to a private school but from our research I think they are in a similar shoes to normal schools in catering for her needs ie poorly.
We took the view to save the money and use it to pay for after school help or during school time extra lessons 1 to 1 lessons as well in English/maths etc but also for social interaction plus nice activities for physical things to help her indoor skydiving/skiing etc (you have so got to try a family indoor skydiving so much fun !! tesco vouchers as well !!)
As others have said there are so many hoops and so hard to get a diagnose in terms of the time and who to see etc hence why privately was the best and quickest way forward.
We took the view to save the money and use it to pay for after school help or during school time extra lessons 1 to 1 lessons as well in English/maths etc but also for social interaction plus nice activities for physical things to help her indoor skydiving/skiing etc (you have so got to try a family indoor skydiving so much fun !! tesco vouchers as well !!)
As others have said there are so many hoops and so hard to get a diagnose in terms of the time and who to see etc hence why privately was the best and quickest way forward.
Blimey, this is quite a read!
We got a diagnosis of AS for my son when he was 10, he's now approaching 16.
It's been a roller coaster ride all the way through for him and us BUT by battling along, we've survived it and as a family are possibly stronger for the whole experience. He still struggles with friendship groups and at times his interpersonal skills can make you cringe but as he's got older, it is so much easier than it was.
School have been amazing (state) and he has found with their help the subjects he likes to focus on academically and the extra curricular stuff has been the icing on the cake. We should have guessed but he adores the Cadet Force. The routine, the uniform, the rules etc are all perfect for him. Duke of Edinburgh scheme is the same with loads of structure.
GCSE's are now approaching, mocks complete with no drama, again really well handled by the school and he's on target to join the 6th form. Everything is about structure and routine in our house from the moment he wakes up to the time he hits the sack and we've been taught strategies it seems for every eventuality. We hardly even notice it ourselves now, it's almost as if we can do it on auto-pilot.
My wife in particular has immersed herself into gaining as much knowledge and help as she could to help the lad along.
My heart goes out to you all struggling, we've all had those dark days and at times they seem overwhelming. Good luck to you all!
We got a diagnosis of AS for my son when he was 10, he's now approaching 16.
It's been a roller coaster ride all the way through for him and us BUT by battling along, we've survived it and as a family are possibly stronger for the whole experience. He still struggles with friendship groups and at times his interpersonal skills can make you cringe but as he's got older, it is so much easier than it was.
School have been amazing (state) and he has found with their help the subjects he likes to focus on academically and the extra curricular stuff has been the icing on the cake. We should have guessed but he adores the Cadet Force. The routine, the uniform, the rules etc are all perfect for him. Duke of Edinburgh scheme is the same with loads of structure.
GCSE's are now approaching, mocks complete with no drama, again really well handled by the school and he's on target to join the 6th form. Everything is about structure and routine in our house from the moment he wakes up to the time he hits the sack and we've been taught strategies it seems for every eventuality. We hardly even notice it ourselves now, it's almost as if we can do it on auto-pilot.
My wife in particular has immersed herself into gaining as much knowledge and help as she could to help the lad along.
My heart goes out to you all struggling, we've all had those dark days and at times they seem overwhelming. Good luck to you all!
AMLK said:
Thanks oldbanger, hope you are feeling better and are in less pain.
Good day so far. Took Anna swimming with a couple of friends and they had a great time. Just chilling now.
Can see light at the end of the tunnel now.
Hope everyone else is getting on ok.
Thanks again for everyone's support, it good to know I am not alone.
I am a bit better, thanks. Good day so far. Took Anna swimming with a couple of friends and they had a great time. Just chilling now.
Can see light at the end of the tunnel now.
Hope everyone else is getting on ok.
Thanks again for everyone's support, it good to know I am not alone.
I thought I'd give a bit of update.
Our older child has just been referred for assessment for autism and we have confirmation that she is on the waiting list. I had also got a CAHMS referral and she is due to start psychotherapy next week.
Things aren't so progressed for our younger girl but both autism referral and camhs are in hand. Her behaviour is still very challenging but the violent meltdowns have noticeably decreased.
Adoption support have come through with an intensive therapeutic parenting program which has just started.
So it's all go, pretty intense, but promising.
On the other hand, it turns out I do have a problem with my heart (I was admitted with chest pains a few months ago, ultimately thought to be nerve pain at the time.) I still have the chest pain intermittently. However I am on the bounce as much as I can. My other half, however, isn't coping right now. So I am on my own when it comes to keeping things going day to day.
Our older child has just been referred for assessment for autism and we have confirmation that she is on the waiting list. I had also got a CAHMS referral and she is due to start psychotherapy next week.
Things aren't so progressed for our younger girl but both autism referral and camhs are in hand. Her behaviour is still very challenging but the violent meltdowns have noticeably decreased.
Adoption support have come through with an intensive therapeutic parenting program which has just started.
So it's all go, pretty intense, but promising.
On the other hand, it turns out I do have a problem with my heart (I was admitted with chest pains a few months ago, ultimately thought to be nerve pain at the time.) I still have the chest pain intermittently. However I am on the bounce as much as I can. My other half, however, isn't coping right now. So I am on my own when it comes to keeping things going day to day.
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