school refusal can anyone help me please

[nannysandy]

My son is 13 and has been displaying typical Aspergers symptoms for the past 8 years he has had 2 ados tests the first he was short of a diagnosis by 1 mark the second he scored 3 marks short.instead they diagnosed generalsied anxiety disorder i even went on to a private assessment which was again refused becuase they said he showed empathy and aspergers children have no empathy. His very nest friend however of the same age is diagnosed with severe aspergers and he shows empathy for others , my son has been a young carer for me for years and i beleive he understands others with disabilities because he knows about disability as he lives with it daily. since year 6 he has been suffering form school refusal, severe stomach cramps , pains in his legs headaches ,vomiting etc again typical aspergers he has even been hospitalised twice with somatic symptoms that they couldnt explain. He has no statement and camhs wont give him counselling becuase in the past he wudnt talk in the sessions. after 2yesr i have finally taken him out of school as the school is merging and tripleing in size and moving site this year , the nightmare will only get worse i felt every day i was sending him into the lions den. the local disabled children social services refuse even an assessment they say anxiety is not a recognised dissability despite him also being partially sighted and diagnosed with dyspraxia he doesnt "meet the criteria" they have told me in no uncertian terms that they beleive it is us who cause his anxiety and i beleive i is their refusal to accept his disabilities which makes him worse, the people that make these decisions have never even met my son, and evenr efused to do when i ask them to. once again todya we had a meeting i had two doctors letters saying he was struggling going to school because of illness caused by his anxiety about school , they said the letters were worded wrong and it wud need to say he can't attend school at all due to illness for me to get any help, so the outcome of the meeting was that it was me failing to educate my son and not only did he have to go back immediately (he has been off now for 4 weeks since they last sent him home because he was so bad), but he was also going to be kept back a year to allow him to mature enough for the big changes that were being made, if i dont do this am going to be prosecuted i have tried for statements 4 times and so far only got a note in lieu which has been ignored ieps are never followed up ive never had one review in all his years at school and although schol themsleves sent him home 3 out of the last 12 days he was there, noone is doing anything about it, i dont know where to turn , he needs a diagnosis and a statement to get help but school told me they see it as a waste of time now they would oppose another application, but i see on here so many of you wiht the same stories when ben had his ados he hadnt started refusing school but coming up for sats in year 6 he became ill and now in year 8 he is no different ive done everything i can think of ive quoted the law etc but its all no use please can anyone help me to help my boy as i write this he is sat behind me unable to sleep with the worry thats he is going to have to do an extra year in the "lions den" and i dotn know how to help him

[Karen A]

Hi nannysandy Welcome to the Forum.It sounds like yourself and Ben are having a very difficult time. <'>

Lots of people here have been through very similar difficulties with obtaining a diagnosis,obtaining a statement,school refusal and attempting to support a child who is very anxious.

I wonder if it is worth going back to whoever wrote the letter re struggling to go to school.If you can get the wording changed to document that in a doctor's opinion your son is too unwell to attend school then whoever spoke to you about it should not be able to pressure you.

If your son previously had the ados twice then another possible option worth looking into may be to see if there is a professional in your area who is able to administer the 3di.CAMHS suggested that we did the 3di because professionals could not agree re ASdx.The 3di is supposed to be more accurate in the ability to discriminate in cases where other disorders may be involved and in cases that are borderline.A team at Great Ormand Street hospital can also undertake assessments which include the 3di for children and teenagers who are refered by their local professionals where there is a debate regarding borderline diagnosis and an expert opinion is needed.It may be worth looking into that possible option too.

There has been a thread running regarding abscence due to anxiety/ mental health difficulties.I will find it for you.Karen.

[Karen A]

http://www.asd-forum.org.uk/forum/index.php?showtopic=21117

This is the thread.Karen.

[nannysandy]

http://www.asd-forum.org.uk/forum/index.php?showtopic=21117

This is the thread.Karen.

Hi Karen thanks for that i have been up half the night again worrying,never heard of a 3di but if it involves a multi disciplinary team then we can probably forget it, half of them refuse to turn up at meetings and saying Ben doesnt meet the criteria is the standard response i get from everywhere, as i said usually from people who have never even met him, what actually is a 3di? i have just sent my husband up to deliver a letter to the doctorasking for a correctly worded letter but im not hopeful as he did say only a month ago he would not say being out of school is best for any child.I will have look at the thread you sent me, cheers!!

[Karen A]

Hi Karen thanks for that i have been up half the night again worrying,never heard of a 3di but if it involves a multi disciplinary team then we can probably forget it, half of them refuse to turn up at meetings and saying Ben doesnt meet the criteria is the standard response i get from everywhere, as i said usually from people who have never even met him, what actually is a 3di? i have just sent my husband up to deliver a letter to the doctorasking for a correctly worded letter but im not hopeful as he did say only a month ago he would not say being out of school is best for any child.I will have look at the thread you sent me, cheers!!

 

Hi.No it would only need a referal probably by a CAMHS psychiatrist or paediatrician I think.The whole team would not need to agree.Karen.

 

[bid]

Welcome to the forum It sounds as though your whole family is having a very difficult time

 

OK, now I'm going to offer a different perspective...If I have understood properly, your son already has a dx of dyspraxia and generalised anxiety disorder. He is also a young carer.

 

Given your current situation, I wonder if you should stop fighting for a dx of AS, at least for now. Maybe your time and energy would be better used to fight for the support your son needs for his difficulties arising from his dyspraxia and anxiety plus the added pressure of being a young carer?

 

I'm not clear if you are being seen at CAMHS. If not, I would ask your GP for a referral there as the best starting place to look at your son's actual difficulties. It may be that during any treatment at CAMHS they do decide that he is on the autistic spectrum...if they do, great, but even if they don't, he will still be getting help and support.

 

It is also possible to get a Statement without a dx of AS, as it should look at his educatioinal needs. If you haven't used them already, IPSEA offer excellent support and advice.

 

Lastly, under Every Child Matters there is meant to be extra support for young carers. I wonder if an advocate would help your family, and one of the charities for young carers might be a good place to look for this.

 

Best of luck.

 

Bid

[nannysandy]

Welcome to the forum It sounds as though your whole family is having a very difficult time

 

OK, now I'm going to offer a different perspective...If I have understood properly, your son already has a dx of dyspraxia and generalised anxiety disorder. He is also a young carer.

 

Given your current situation, I wonder if you should stop fighting for a dx of AS, at least for now. Maybe your time and energy would be better used to fight for the support your son needs for his difficulties arising from his dyspraxia and anxiety plus the added pressure of being a young carer?

 

I'm not clear if you are being seen at CAMHS. If not, I would ask your GP for a referral there as the best starting place to look at your son's actual difficulties. It may be that during any treatment at CAMHS they do decide that he is on the autistic spectrum...if they do, great, but even if they don't, he will still be getting help and support.

 

It is also possible to get a Statement without a dx of AS, as it should look at his educatioinal needs. If you haven't used them already, IPSEA offer excellent support and advice.

 

Lastly, under Every Child Matters there is meant to be extra support for young carers. I wonder if an advocate would help your family, and one of the charities for young carers might be a good place to look for this.

 

Best of luck.

 

Bid

 

[Sally44]

Didn't you say in your original post that CAHMS had dismissed him because he wouldn't speak to them? Surely that is a sign in itself that there is a problem? Maybe others can comment on where you would go from there regarding CAHMS.

 

I was also under the impression that those with a diagnosis of AS can have empathy and theory of mind, although it may again be on a spectrum of abilities. My son is autistic and has empathy, but he needs the situation explaining to him so that he understands it, then he is perfectly capable of showing empathy. And, as you have said, as your son is a carer, he will have learnt about other people's difficulties.

 

The only thing I would add to everything you have posted, is that when you are ever refused a service for whatever reason always ask the person to put their explanation in a letter to you. You will be surprised at how many people will not do that, or will capitulate and provide the support rather than give you written evidence that they refused it. If they don't do that you can write to them yourself in the terms 'further to our telephone conversation of XXX you told me XXX, can you please confirm that my understanding of the situation is current.' It is always useful to have this kind of written evidence for any further action you may wish to take.

 

Have you also involved the Parent Partnership? They can be very useful in making sure that agencies actually follow through and do what they are supposed to do. I always used them to take notes at meetings and to help me gather evidence.

 

I think that bid's approach maybe the most useful at the moment. As well as Karen A's suggestion of asking the GP to use the correct wording in a letter.

 

I would also put the request to the GP in writing giving him a brief but succinct picture of where you are, ie. 'thank you for your letter/note dated xxx unfortunately the school will not accept this as it is worded incorrectly and have asked for a further letter/note correctedly worded so that my son can access home tuition whilst problems at school are worked on. We are at the stage where school have threatened prosecution, which would be very traumatic for both me and my son due to our respective diagnosis. Therefore your prompt reply would be appreciated.'

[nannysandy]

Hi Bid, Thanks for the reply, Ben has been a young carer for 6 years at first it was ok but since he has been suffering this school refusal he has withdrawn more and more and the last time he went to yc i actually had to force him with the promise of never ever making him go again if he gave it one last chance, he can't handle the noise and the number of kids there a bit like school he prefers to stay in the house never plays out (seriously in over 4 years he hasnt played outside the house) he used to but not much, he wont even go to the pictures any more prefering to wait till the films come out on dvd,

he has been with camhs since he was 7 as well and was diagnosed very easily with dyspraxia because his older brother has it so they hardly did any tests just said yes its the same when he was 5 but hes never been the same it was sensory problems like hair cutting and hating water nail cutting etc that got that diagnosis but he never had the clumsiness his brother had, he was always weird, odd likes routine took things at their literal meaning didnt understand social situations.New years eve has been a particular nightmare Ben is unable to beleive he can go to bed and wake up and its another year.resulting in a 2 hour screaming locking himslef in the bathroom at the first new yeasr eve party he went to last year he was fine till the kissing started at midnight and then he was in a different world for days not accepting any explanation anyone tried.

i did stop fighting for As over 2 years ago when he didnt get diagnsis i paid for a private 2nd opinion but then gave up but a couple of months later he started secondary school and started with the school refusal which along with everything else he has is typical of aspergers, if he had never had the diagnosios of dypraxia i think he might have got AS right away but they attribute a lot of stuff to that when having had a dyspraxic lder child i know hes much different.

the label of generalised anxiety disorder was given after the ados instead of aspergers with the psychlogist saying it is similar to aspergers and will get Ben the help he needs. instead of which his case was closed by the childrens disability service and they constanly refuse to re open it they have actually said anxiety is not a disability if it is caused by bad parenting,so we do all the parenting classes etc but it doesnt change ben.i have fought for support and forgotten about As for over 2 years and now we are with camhs again but they refuse any kind of therapy for Ben because he wont talk to them when they have previously tried it

I have been through ipsea for statementing(fourth time of trying) and ben only got a note in lieu i mistakenly thought that would help, so let it go at that , only to find a year on this has been totally ignored, I have also done the every child matters thing ive quoted every part of the online documents i can find, to no avail they say he doesnt meet the criteria, so i now believe that every child matters except for my son!! He is also partially sighted with a constant eye wobble made worse by anxiety but they keep forgetting about that. I am not a person who sits back and lets them walk all over me but i really think that thats why thye have taken against me and decided to fight me at every stage.

the only one thi9ng you have suggested that i havent used is an advocate i have been trying to get one since january and have left a lot of messages for people who dont ring me back so really i have given up but the only option ben is facig now is an extra year in school which just will make it worse, i do appreciate you taking the trouble to reply but i really have done most of what oyu suggest, maybe i should make more effort to get an advocate though like you say, cheers anyway nannysandy x

[nannysandy]

Hi Sally, i have never been on one of these sites before and this is great to know there is this kind of support out there, thanks so much for replying, yes i said this to camhs surely if he wont even talk to trained people whose job it is to get people with problems to open up to them , then this in itslef indicates a serious problem and the answer is surely to kep trying not to dismiss him.

I have also written emailed ,phoned etc etc to ask for written explanations why decisions are made mostly i get no reply if i ring they say we are going round in circles and i have got other people to deal with and ben doesnt meet the criteria , i have been to my mp complained to the ombudsman ect they all get the standard reply he doesnt meet tthe criteria and they refuse to explain the criteria, in my last phone call the social worker actually said he is not classed as disabled just because he gets higher rate dla he would have to be statemented, but i KNOW that isn't right i asked her to put that in writing she said i dont need to put anything in writing and i have to go because i have other people to deal with and put the phone down. i seriously think someone somewhere on our files has put some comment about see this comment on our file and then decide we are to blame, a few yesr ago ben was wetting ( he still si whne hes at school) and soiling aged 8 we did loads of stuff around the poo issue and once i said we r beginning to think it is something we are doing wrong , that quote gor put in a ltter to our gp and i reckon it came from there and we have been labelled bad parents cheers nannysandy x

[Sally44]

As you are also classed as disabled, do you meet the criteria for Legal Help?

I think that if you are on any kind of tax credit, that you will be over the threshold, but if you are on income support you may be able to get legal help.

I did resort to using a solicitor, but that usually means you also have to get private reports, and that all adds up. But you could look on the NAS website for a legal advocate in your area who has experience of SEN law and at least find out if you are eligible for Legal Help.

I know there are other advocates out there, but I don't know how to access them - maybe other forum members will post that information.

If you suspect that there is something on your son's medical records you can ask to see them.

And you don't need a diagnosis to get a Statement. You need written evidence of needs and recommendations about how school should meet those needs.

[Lisa40]

I am sending you lots of hugs (but don't know how to use the emoticons). It is a really hard fight when you know that there is a problem but you are not taken seriously. I am new to this forum and have only recently had the diagnosis of AS for my daughter so am struggling with what is available so I think others on this board are more able to advise than I am, but the support you get from this forum is wonderful and has helped me a lot and I am sure you will get that same support too.

 

Lisa xx

[Mandapanda]

Hi nannysandy

 

See my thread School Phobia/Refusal. Some of the advice given to me might be useful to you as well.

 

We spent a year seeing a CAMHS practitioner who only wanted to make us make our son go to school and obviously believed he was just manipulating us. When he could understand or couldn't answer her questions she was clearly annoyed with him and said we weren't engaging. It's so easy to blame the parents (I even do it myself sometimes!). We ended up complaining and now see an actual psychologist who has been much more open minded and supportive.

 

My youngest son has a diagnosis of Severe Anxiety & School Phobia, Depression and traits of ASD. It's annoying when you get a diagnosis like this because people just think 'he worries too much' and think it is something he should be able to overcome. And traits sounds like something not very important but his traits are pretty major seriously affecting ones! I too 'gave up on AS' for several years after the School Nurse snapped at me "just because you have one child with Asperger's doesn't mean you'll have two". These people have no idea at all of the affect they have on children's lives and that of their families.

 

There are other people offering good advice to you, I'll just send you these <'> <'> <'>

 

 

 

 

 

 

[bid]

Sorry to hear things have been so frustrating.

 

I still think that sometimes it helps for us parents to take a step back and look at which battles we are choosing to fight. If you are being met with resistance, etc, over the AS diagnosis, given your current situation I would still change my tactics and let that drop (for now) and focus on your son's actual needs, irrespective of what they may be called now or at a later date. I would list these needs and go back to the various people who have discharged you and ask again for the right help and saupport. Sally has a very good point for asking to have it in writing if this help is refused and why.

 

School: it is quite right that they have no legal obligation to provide any education unnless he is formally declared unfit for school on medical grounds. I hope you get a letter worded in the right way. You can then give a copy to the school, the LA and the EWO and remind the school that they now have to refer him to the LA's Hospital and Home Education team (or similar name) for education otherwise than at school.

 

Statements: I'm not sure if a Notice in Lieu has an annual review? If it does I would highlight the fact that it isn't working and say you will go for a Statement again focusing exclusively on his actual needs and this time you will go to Appeal. If it doesn't have an annual review, do the same anyway.

 

I found that when my son was out of school and I went for a Statement, etc, I had to be extremely clear about exactly what it was I wanted, and then tailor my approach and tactics to that end without getting sidetracked by other things. In my case I wanted a Statement and a place at a residential special school, so I presented all my evidence to that end...and I let go the things that had happened in his mainstream school that I could have made formal complaints about because it would have been a waste of my time and energy.

 

HT

 

Bid

[nannysandy]

Hi to all of you and thanks so much for the replies and even the hugs help believe me!! unfortunately we odnt qualify for legl help and i have tried solicitors who say htey specialise in education but only as far as getting a statement goes, they told em i cant claim any harm is being done to my son by not providing him with the correct provision until years after he leaves if and when he fails in life !!! brilliant ill look for ward to that then shall i?

As i said i have already put the As diagnosis on the back burner for 2 years and have been concentrating on keeping him and getting him back in school.As thsi is a complete failure i hacve been looking for other answers and have found sites like this one with other children like Ben , this has made me think i shouldnt have left As on the back burner and so now it is time to try again for that diagnosis once he is back in school.

my doctor will by now have my letter asking for another correctly worded letter i have also posted a letter to camhs asking for a 3di, The note in lieu Does have a review date of 12 months which is this May but the schools version of Ben not coping is he hasn't been in school long enough to implement anything the note in lieu says, please dont for one minute think when i say i have already done things you are suggesting that i am dissmissing them, at least i can see i have done the right things for Ben, and i have already had a few suggestions to get me motivated again , its very hard when even the local childrens social services (who have tried to help but dont normally work with disabled kids cos the ones who do wont even assess ben for help)said they can't believe our treatment and they actually agree with me that someone out there is using Ben to try to prove some kind of a point against us. I've even thought of moving but my husband would never get as good a job anywhere else and i have my mother who is blind to look after and my elder disabled son as well so we are stuck so have to carry on fighting

[Lisa40]

You have to keep insisting on getting a dx. Unfortunately sometimes CAMHS are not too helpful. My daughter was referred to them when she was 12 and refused to co-operate and speak to them, she just clammed up, the councillor that we saw thought she was on the spectrum and referred us to the psychiatrist, who spent 10 minutes with us and told us that she did not have a mental health issue, even though her natural father has AS and she was exhibiting the same symptoms. The educational psychologist at school put her down as an indulged child and said that it was a family problem as I had remarried and that it must be a problem at home. In the end I insisted that our GP refer us privately, which she did and she had the assessment and was diagnosed as having AS, but it took until she was 15 with various problems at school and lots of school refusal and various schools as well. She was referred back to CAMHS and when we saw the councillor there she said that my daughter didn't exhibit the usual signs. At that point I insisted we see the psychiatrists again for an assessment. Luckily the psychiatrist saw the report, listened to us this time and agreed with the dx.

 

What I am basically saying is you have to keep insisting on help, make your GP refer you back to CAMHS and make sure they listen to your concerns. It is like they have a checklist and if there is something that your child does not exhibit then they tell you they don't have a problem. My daughter can be sympathetic at times but at times she also lacks total compassion. So don't take no for an answer. You must go with your gut feeling.

 

Lisa

[bid]

once again todya we had a meeting i had two doctors letters saying he was struggling going to school because of illness caused by his anxiety about school , they said the letters were worded wrong and it wud need to say he can't attend school at all due to illness for me to get any help, so the outcome of the meeting was that it was me failing to educate my son and not only did he have to go back immediately (he has been off now for 4 weeks since they last sent him home because he was so bad), but he was also going to be kept back a year to allow him to mature enough for the big changes that were being made, if i dont do this am going to be prosecuted

 

Given your current situation, this looks like the area you need to focus on at the moment.

 

Good luck.

 

Bid

 

 

 

[nannysandy]

Hi Lisa Thanks for that i dont think Ben has even seen a psychiatrist hes still on camhs but they r not doing anything i asked for both a psychiatrist and medication 2 years ago they refused. Welfare just knocked on my door unnannounced and said if he doesnt go back they r ready to take me to court i said go ahead!! and i will go straight to the papers i am registered blind and have diabetes with complications and Ben has several complex diagnosis how will they look in the papers!!! secretly i am scared i never thought it woudl get this far!! i will fight them all the way

 

[Karen A]

Didn't you say in your original post that CAHMS had dismissed him because he wouldn't speak to them? Surely that is a sign in itself that there is a problem? Maybe others can comment on where you would go from there regarding CAHMS.

 

CAMHS are only able to offer talking therapies where children or teenagers are prepared to talk.They are very reluctant to push therapy or councelling where a child does not wish to engage in the process.It would rightly be regarded as competely unhelpful in terms of the therapeutic relationship.It is regarded as unethical to attempt to pressure an individual to engage in treatment without there consent unless they are sectioned under the mental health act.Karen.

 

[Lisa40]

Hi Lisa Thanks for that i dont think Ben has even seen a psychiatrist hes still on camhs but they r not doing anything i asked for both a psychiatrist and medication 2 years ago they refused. Welfare just knocked on my door unnannounced and said if he doesnt go back they r ready to take me to court i said go ahead!! and i will go straight to the papers i am registered blind and have diabetes with complications and Ben has several complex diagnosis how will they look in the papers!!! secretly i am scared i never thought it woudl get this far!! i will fight them all the way

I would also ask to see your MP. I had one meeting with educational welfare when she was 14 and was refusing school and went to see my MP and although he was not that helpful he did manage to get them off my backs. I then took her out of the system and said that I would home school, but that only lasted a couple of months as I need to work full time and she is not very motivated, so we put her back into the school system and then 2 schools later (in 12 months) she is now not attending (since September) and I haven't even seen or heard from educational welfare.

 

I was also recommended to speak to social services about her being a child in need. You may need to get back on the phone and call every single service available. I know it is frustrating but sometimes a lot of noise helps. It did with me when I finally got CAMHS to recognise my daughter's dx. THey initially told me that I needed to go back on the waiting list but this had been going on for so long I said that if they couldn't see me straight away I would turn up at their office and leave my child with them.

 

I did get some advice from the Childrens legal centre. I have put the link on another thread in education. They may be able to advise you about your options.

 

[Karen A]

Hi Lisa Thanks for that i dont think Ben has even seen a psychiatrist hes still on camhs but they r not doing anything i asked for both a psychiatrist and medication 2 years ago they refused. Welfare just knocked on my door unnannounced and said if he doesnt go back they r ready to take me to court i said go ahead!! and i will go straight to the papers i am registered blind and have diabetes with complications and Ben has several complex diagnosis how will they look in the papers!!! secretly i am scared i never thought it woudl get this far!! i will fight them all the way

 

Hi.I am a bit confused.If Ben has a diagnosis of generalised anxiety disorder I would have thought he must have been seen by a CAMHS psychiatrist.I didn't think anyone but a psychiatrist could diagnose anxiety disorders.I would also be very surprised if a psychiatrist was not part of the mutidisciplinary team doing the ADOS.It would be very unusual.

If your child has a diagnosis of generalised anxiety disorder and has been caring for you for some time then CAMHS may well feel that these could be factors in school refusal.There is a known link between being a young carer and school refusal which is recognised by mental health professionals.

I do understand your situation.Ben has dyspraxia and AS.Ben was not diagnosed with AS for two years mainly because I have a complex mental health history.It was thought that Ben had some sort of attachment disorder due to my mental ill health in the first few years of his life.

I have to say that CAMHS have always been and continue to be excellent in the support provided and they care and understanding they give all of the family.

There is no reason why your Ben could not have a Statutary Assessment on the basis of mental health needs.SEN applies equally to mental health needs where they impact the ability to learn.

I think it is woth considering carefully the wisdom of involving the newspapers.

I can say this because I am now very well and all of the professionals and people that matter are aware of my situation.

It is possible that if your son is having mental health problems and is known to be a carer for you and you attempt to argue that you have several problems then EWO or Social Services may question whether you are able to provide adequate parenting.This may be more of an issue if your son is your main carer and there is no other adult in the home.

CAMHS certainly looked at my parenting in extremely close detail as part of assessments.I was also fortunate in that there had always been another adult in the house .

I do not intend to influence you.However I think it is worth being honest about the questions that will be asked.

I am probably unusual in having been through experiences that are similar to yours.

As I said Ben did recieve an ASdx when he decided that he would like to know.However OH,myself and Ben did attend psychotherapy for two years on the basis of the original diagnosis.

Ultimately in some situations even with an excellent team it can be very difficult to obtain a clear diagnosis.This is not because people are difficult. AS Diagnosis is currently still a matter of professional opinion to some extent.

The psychotherapist that we work with weekly and for whom I have vast respect is still not convinced that Ben has AS. Karen.

[bid]

Hi Lisa Thanks for that i dont think Ben has even seen a psychiatrist hes still on camhs but they r not doing anything i asked for both a psychiatrist and medication 2 years ago they refused. Welfare just knocked on my door unnannounced and said if he doesnt go back they r ready to take me to court i said go ahead!! and i will go straight to the papers i am registered blind and have diabetes with complications and Ben has several complex diagnosis how will they look in the papers!!! secretly i am scared i never thought it woudl get this far!! i will fight them all the way

 

I can only echo Karen's post

 

I think you need to be very, very careful about involving the media. It could backfire spectacularly

 

IMO, you need to be as reasonable and as well-balanced as possible in this situation.

 

Bid

[nannysandy]

Hi karen A , Ben has only seen psychologists and a nurse never a psychiatrist despite my repeated request , i am married and my husband is the main carer ben does little things like read things to me check the oven temp etc but you are right they are blaming that instead of trying to help Ben.cheers for the advice maybe the papers isnt the right thing but they dont know i wont go!! cheers nannysandy

[Karen A]

Hi karen A , Ben has only seen psychologists and a nurse never a psychiatrist despite my repeated request , i am married and my husband is the main carer ben does little things like read things to me check the oven temp etc but you are right they are blaming that instead of trying to help Ben.cheers for the advice maybe the papers isnt the right thing but they dont know i wont go!! cheers nannysandy

 

Who did the ADOS times two ????

Nurses cannot do the ADOS and it would be very unusual ineed for two to be done without involving a CAMHS psychiatrist.

I don't think psychologists can diagnose generalised anxiety disorder

If Ben has never been seen by a CAMHS psychiatrist then I would think you would be entitled to a medical opinion.

I think it would be worth contacting PALS for your CAMHS.Find out what the procedure is regarding requesting a consultant opinion.Karen.

 

 

[nannysandy]

Hi Karen a i even went to pals to ask for a second opinion they looked at my case and refused even tho bens ados was only done by a psychologist not a psychiatrist Ben is a child in need, but they say its becaus of us causing his anxiety and he doesnt meet the criteria for assessment as a child in need due to disability.

I also went to my mp about social services refusal to assess they sent me a reply saying he doesnt meet the criteria but not what the criteria are!! even though he does meet the government criteria for being classed as disabled.

 

[lynne]

 

 

Another alternative you can do is to self refere your child to Action for Children or Barnardos.

 

 

They aim to keep the family together and work with the family and child. So they can provide counselling, seeing specilaist etc. And its all aimed round children with problems.

 

 

You could also ask your GP to refer you to a different CAMHs team, as you are entitled to a second opinion from another specilaist.

 

 

I also agree with Bid, you should concentrate on getting his needs addressed regardless of what label your child is given.

 

Good luck and stay strong.

[Kazzen161]

I also went to my mp about social services refusal to assess they sent me a reply saying he doesnt meet the criteria but not what the criteria are!!

 

Social services have several classes of disability/need, and each class is then usually divided into four levels (critical down to mild). They then decide which levels they can help, depending on how much funding they have. Here, they only do critical, so things have to be very, very, very bad before they will help. You can sometimes find the criteria on your councils web-site. If not, I believe you are entitled to ask for a copy.

 

It helps to know what the criteria are, as you can then twist things to fit eg: your son may get help because he is partially blind, even though his AS is cauing more problems.

[nannysandy]

thanks again everyone i cant thank you all enough i will try barnados tomorow , my gp refused a new camhs team for a second opinion, i went private for a 2nd opinion and the main reason for refusal of aspergers diagnosis was his empathy with others this was before school problems though , i have also asked for the " criteria" Ben doesnt fit but they constantly refuse to tell me , they said they do not have to explain i have asked many times and also quoted the law and the criteria i believe he does fit which the government use but i do understand different local authorities have to prioritise different needs, but all the other professionals say he does meet their criteria and they are just proving a point by refusing him help. Our social services here are a law unto themselves , the last time they even answered one of my letters was 2007 and they even told camhs that they had rung and offered me help and i had refused!!!!i have never even had one phone call from them it has always been me who rang them and why would i refuse help when i have been trying to get it for so long!!!They can't even be fully aware of Bnes needs as they wont even do an initial assessment and everyone is entitled to that!! cheers again all , nannysandy!!!

[lynne]

If you have not had a second referral (nhs) for a second opinion your GP can not refuse to refer you. As your childs problems is outside his experience. Now would be a good time to go back and discuss your childs refusal to go to school. Ask him for help as in a second referral to a specialist.

 

 

If you do not get any joy contact PALS which is a national organisation to help with problems within the NHS.

 

 

Keeping being presistant.

 

The other alternative is to change GPs

 

You need to sort out which problem you are going to deal with. My first thought would be to deal with the school refusal. Identifying whats causing the problem and finding the right help and support.

 

 

Good luck and let us all know how it goes.

Edited April 23, 2009 by lynne

[nannysandy]

Cheers lynn i am planning to do just that see the doc again next week but the lea wont accept his letter has to be consultant and i have already been through pals took over 6 months and they rejected my application for a second referral its now 2 years on tho so i might try again cheers, nannysandy x

[nannysandy]

Hi Lynne just to let you know i was really hopeful when i read your comments but i tried action for children and they only deal with children with anti social behaviour so couldnt help , and then i tried barnados who advertise all over their website that thy help with things like this but they said it as only if there is a local offfice and otherwise they dont and our local office only deals with childcare for children in a specific regeneration area close to me, so short of biting the stagg and throwing a table he cant get action aid help and unless we go on the dole and move half a mile up the road neither will barnados, its soo frustrating, how can barnados advertise that they do these things when they dont!! Anyway i have taken very positive action ,l ive written to the consultant made a gp appointment , written to camhs and put in another parental request for a statutory assessment all since yesterday and im now tryig to get an advocate for ben!! so thanks again everyone, nannysandy