dixie

Here is a post I did from January this year, it explains how my returning to work happened. The positive that came from this post was I actually landed a very high profile and demanding regional job for a very well known high street store. The not so positive is that I am daily winging it, and still trying to care for him whilst now holding down a high profile job. Big Sigh, I am sure you have all come across my situation so many times, I am at an utter loss which direction to go, I have been a long term Carer to my Son, He was diagnosed at 3.5 years approx 2001, He will be 16 in May this year, The diagnosis on the letter from his specialist was written Autism, this then changed through the years to Aspergers as more was learned about the condition, it was picked up on a health vistor review and they referred us into the system, with his non communication, it was just echolia. Through the years we have faced many many hurdles, Skin sensativity to weather, Wind or the rain freaked him out, so he would not walk in it or had a massive meltdown to the point of vomiting School run 4 times daily, was exhausting at that time,, all the usual difficulties associated with aspegers, Panic attacks which he was put on medication for, He still has night time enuresis, etc etc, I will not list all the difficulties, but suffice to say I feel totally out of my depth with the new changes and decisions, He has a indefinate DLA award, which they have now wrote and asking him to apply for PIP as he has turned 15 and 7 months, I was expecting this, but not so soon, When I first read about it, I was under the impression it would be 18, and I hoped that My son would be more ready to function, anyways to cut along story short, I have tried to speak to my son regarding his descion on claiming for PIP, I say spoke to him, two short snippets of conversation as my son gets angry with me and refuses to speak about the matter, he is 6 foot 2inches tall, and has agression issues, I have had to lock myself in the bathroom to escape from his tirades in the past, so conducting a conversation of this nature with a teenager who can be aggresive in nature has been not so pleasant, he hates the fact that he has aspergers, and won't admit that he needs help, but the reality is that I cannot leave him to care for himself, He needs encouragement to shower, he will lie in a wet bed for days if I let him, not caring that he is lying in urine soaked sheets, he cannot cook for himself because easily distracted. Meltdowns, Budget handling. Time Management. Getting him up. So many more issues, that come into the day to day life of caring. My son has flat out refused to entertain claiming, yet he is not capable enough yet or mature enough to understand the life choices he is making not only for himself, His DLA enabled me to support him, on his needs. I have no family support at all, his caring has come down to first for along time with myself, then when I remarried it has fallen to myself and my husband with no outside help, He is not ready to fend for himself yet, but financially these new changes and the choice my son has made is going to force me into a position where I will have to leave him on a daily basis on his own to care for himself. I am scared half to death on having to do this, because he is just not ready. Yet my hand is being forced into leaving him. I feel utterly despondant as a mother, i gave up all career avenues, doing the right thing on making sure he was safe and looked after, in the time that I have been caring for him, he has brought down two ceilings, set fire to an electric blanket by accident, and blown all the electrics by flooding from the bath, I had to stay at home and care that his difficulties were met, The last ten years have been hell, no social circle, no friends. No career. So now I am left with my son making financial descisions because he is going to reach 16, he does need the help, I have been desperate to work for years, yet his needs prevented this, So the years passed, He will not attend an assesment for PIP, this much I know as just getting him to any hospital appointment, has been a shouting match, weeks and weeks of I am not going, I have no idea where to even to start, How do I explain such a gap in my CV? Bring your CV, ok I will hand you two pages of blank paper. On a personal note I feel, worthless, my confidence level is non existant, How much more do you have to give? My life continues to be ruled by Aspergers. I may come across of Whiney, or Self indulgent, truely this is not how I wish to be perceived. I am just lost, We have nearly self destructed as a family, due to the aspergers, my son stopped talking to my husband for a year, we have been involved in many family services, which he refused to attend. He is vulnerable and has needed alot of help over the years, but now just because the govenment has declared him an adult at 16 it means automatically his needs are to be forgot. This is against my nature, I really thought I was doing the right thing giving up my life so his would life would be met. Now I just feel so worthless, the pressure of having a difficult homelife has took its toll through the years. I just don't even know where to start. How do you word on a CV Whilst the rest was creating career and prospects you was being attacked, verbally abused, up to your elbows in wet bedsheets, Manic with trying to deal with the pressures of Aspergers, but still got up daily to face each battle? I can't even give two referees because I don't know anybody. I know I would have not have worded this at all right. Please be kind, as I really can't cope anymore with the pressure. I am weeping now as I speak. Letter came 21st of December, Which of course made Christmas most enjoyable, the worry of it all has not left my mind, I have till 12th January, to get the reply back letter is just the one that asks if your intentions are to claim PIP, broaching him with it has clearly indicated that is not going to be an option, to demonstrate the fact here is a chat transcript of the last 30minutes. Son saw the paperwork out because I rang them this morning. Son......."What are they?" Me.........just the paperwork that I need to sort out....Can we try this again and have a civalised conversation about it on how you want to proceed. SON......ARMS UP IN THE AIR.....SCREAMING AT ME.....I TOLD YOU.....YOUR NOT USING ME FOR MONEY! Me........Trying to explain that this is not the case, that he would receive the payment. SON.....DON'T YOU GIVE ME THAT......I DON'T NEED ANY HELP!!!! scream crash bang wallop. round the house. ME.......Christian, don't talk to me that way, (I must admit I got a little angry at this exchange) at his suggestion that I am trying to use him for money...Very much not the case. I would just like to retain carers, as that is what he needs help with. Me caring for him. So the next exchange that explains my responses to the next exchange... In the next breath SON.....Can you make me something to eat, Me....(still angry and hurt), why you don't need any help? you will have to do this on your own now. SON.....DON'T GIVE ME THAT YOU COOK FOR ******* (STARRED OUT 19YEAR OLD SIBLING) Me....She looks after herself. She cooks for herself... SON....DON'T GIVE ME THAT, WHY DID YOU COOK HER A MEAL LAST NIGHT. Me....it was a family meal, (full roast dinner) if she wants a snack she cooks it herself. SON....YEAH YOU TREAT HER DIFFERENTLY THAN ME., I WILL STARVE....DON'T MATTER..... Me....come to the kitchen and I will teach you and stand with you whilst you do it. SON.....TOP OF LUNGS SCREAMING AT ME......THATS RIGHT....YOU LEAVE ME TO STARVE, DON'T MATTER I WON'T EAT. So crying over fried eggs of all things, I made him two egg cobs, he just would not understand that, cooking a full roast is far more different than getting yourself a snack. The last thing I wanted to do was take care of his needs, anybody else you would leave them to it, and make them get there own, No chance of him filling out any forms, part of the problem is that his father, my exhusband has been in his head for years telling him hes not autistic, and i am only trying to use the benefit system. He has been non supportive all the way through bringing him up, myself and my now husband have dealt with everything. Social are not involved, I was told that the social services would not help because of Christians upcoming age, We were handed to Child behavioural, and 123 magic when he was 14...123 magic for a 14 year old. Was never going to work in realistic terms. On the work experience front, I did try but homelife again prevented that, I have one thing in my favour, I managed to secure some qualifications, I did my ICQ for IT USERS level 1 and 2, database spreadsheets and so forth, and I have been trying to get my maths and english done, to help me on my CV, I currently have level 1 Maths but I am in the middle of Level 2, the college would not let me do my English till I finished the Maths, So looks like I will have to give that up as well. The only thing I can see is, if its picking up litter anything, I will do it, but looking through the jobs, I am underqualified to even be a cleaner these days. So much pressure for me to come up trumps and get on the playing field. Just speaking to people is so overwhelming as I have not been out of the four walls for years, my family are in Manchester, I live nottinghamshire. It has always been me the four walls and caring for my son. The big issue for me is my son making the decsion based on teenage asperger drama ideas, and not comprehending what me staying at home as his carer has entailed all these years, and what help he actually needs. He is trying to get into college at the moment, academically he has the requirements, but his social skills let him down, so the first interview did not go down well, thankfully they have gave him another chance to prepare himself, but if he does get into college its the small things, like taking a shower before you go, so that you don't smell of the urine that you have slept in. His meals, time management to get there, that the world is not on his time. He is saying he does not need someone to oversea these things, yet the reality of it. He does, because if that is the case why are all these things not happening now... If I thought he was capable to be left alone for a day etc, I would have done just that. There was neither the option for me to take night work as his relationship with my husband had crumbled to such an extent that like I said before we nearly lost our marraige, thankfully that part has gotten a little bit better and their relationship is much better. The other day, he had a complete meltdown on a very rare visit to his grandmothers house overnight, Why because they were watching casuality, I received a phonecall, saying he would not come out of the toilet, because it was on.....Its something we never watch here so its was a new one on me, after a couple of hours in the toilet, they managed to coax him out. I have no idea why he did it, or what panicked him. I was not even there, even though he sometimes acts and looks capable, there is so much more that goes on that you just can't rationalise. Yet he is making the judgement that he does not require help. I am witless to leave him, to his own devices. Yet in a real world, it is not financially going to be possible. Thats even if someone will give me a chance. I possibly should come back to this thread when I can voice my feelings better, after another tirade, I fear my thoughts are quite disjointed.

Hi Mel, Thankyou for your reply, my son is at college, he has always exhibited quite well through school and college, he never had a social worker but we were involved with child services at one time, as we were having behavioural issues. When he reached 16 and he had his final appointment with his autism doctor, he presented really well, and she signed him off. So effectively we are back out of the system. My ex husband, is a problem. He is not a sort of sit down guy to talk to, I suffered years and years of very bad domestic violence from him. Ended up in refuge for a short time. However, he was not physically abusive with the children, and the law was on his side that he maintained contact with them. However, he is controlling and messes with there heads. So that is a no go option. He does go to football matches with friends but that is his only pastime. Mostly he is up in his room by himself watching tv. I have tried to encorage him downstairs with games of scrabble etc, something that he likes to do. Mostly I am worried about the shouting at himself, he is shouting very frightening things, things that are very out of character for him. I know aspies can talk to themselves, but I think this is something more than ASD traits. I have been documenting his behaviours, with the thought of going to the doctors myself, I am just in an impossible situation, his rage is so immense if I even get two words out to broach anything with him.

Good evening all, I really don't know how to explain it all, but I will try to condense everything the best I can. Myself and my family are becoming increasingly concerned for my son. My son was diagnosed with ASD when he was 3.5 years old, he will be coming up for 17 this May. He is 6" 2 in height. My son through the years has faced all the usual difficulties that Aspies have to face. Some he conquered others are still present. From being small, I never hid the word Aspergers from him, but as he grew older he started to reject that he had Aspergers, mainly this started from my ex husband who refused to ackowledge that he had Aspergers and would constantly tell my son that I was making it up to use the benefit system (dla and carers). From that point onwards being able to help my son has been almost near impossible. As my son reached 16 and with teenager hormones combined, his dla ran out, and he refused to claim in his own right. He refused to ackowledge that he needed help. I know I could have signed for him, but even doing that. I would have still had to somehow get him to the assessment. You cannot force someone to claim, even if it was in his best interests. He would get very angry even I tried to approach him. I was his carer, because he needed care with the day to day activities. Dressing appropriately, making sure safe in the house etc, his anger management. his meltdowns, his nightly bedwetting, suddenly though through his choice I could no longer be there for him at home, and I had to find work. Which I am now working in a very demanding job. I mention all this, as it does bear relation to the present circumstances, I started the job in September, and these last three months things have gone from bad to worse. My son never really suffered from tics, he stimmed but it was more a throwing action, about 6 months ago I started to notice him pacing backwards and forwards, it was nothing to concerning. I thought he was just stimming, as we all know sometimes new behaviours start to exhibit. So I just let him get on with it, but now they are full blown tics, when he leaves the house. He cannot walk out the house he has to do bizarre jerky movements. It can sometimes take him 10 minutes to get out of the gate. He will walk out of a bathroom backwards, he has never done this before. He turns the shower on, off, on off.....he has to open and shut doors 20 times at least. He is aware he is doing all this, and if you accidently catch him, he tries to cover up what he is doing. Start talking to you about random things. So we would not notice what he was doing. We did not want to make him feel uncomfortable about the tics so we did not draw attention to them. Just let him get on with it. But now we can no longer ignore what is happening, he has started to talk to himself in the bedroom. Not just talk to himself, swear at himself, (please excuse my swearing here) He shouts at himself, saying "No, No...I am not having it you ###### prick, I will ###### do you. Then you hear what you can only describe as him fighting with himself on the bed. He has never been one to swear, sometimes these episodes can last near on an hour. He has also started to pee in bottles, he has always been wet at night, nomatter, we have gone through all the usual routes to rectify this, but to no avail, but he always went to the toilet. He refuses to let me in his room, to the point where he physically will keep the door shut. We had instance of the peeing in bottles 6 months ago, it was right after my mother in law had been in hospital, when I found the bottle in his room and approached him on it, he gave the reason that he had done it because he did not want to catch germs from the hospital, it made no sense to me and I told him that it was not an appropiate behaviour and he seemed to stop. Now he has started it back, but this time he is actually removing my cups from downstairs and peeing in them as well. He refuses to clean his room, he hides the smells by buying shake and vac pours it everywhere and then will not clean it up....It is thick with shake and vac in his room, if I go into his room to sort it out when he is not in, he becomes very violent and angry when he comes in. He says its because he can't cope with change, I cannot cope with his meltdowns like I could when he was smaller he is 6"2 now and has the strength to go with it. The shake and vac is now becoming a fire hazard as plug sockets are now becoming thick with it. He is pararoid all the time, and thinks the whole world is out to get him. When people have done nothing to him, at first I thought he may be developing tourettes, but now I think it could be scitzophrena, I am no doctor but all the symptons are there. He refuses to accept that he needs help. Gets very angry, my daughter is 20 is concerned that he will hurt her. Other family members are now noticing those that did not believe he had aspergers are now noticing his odd behaviours. How can I get somebody help that refuses to believe he needs help? He would not attend doctor's, at the first sign of anybody approaching him to talk to him about seeking help. His rage goes off the scale. I Just don't know how to handle it for the best, I am trying to be sensative to him, but we have never tollerated behaviours there was always consquence, or finding a way to help him deal with his emotions in an appropiate manner, He is nearly 17 now, and I cannot reason with him whatsoever. He desperately needs help. I am so worried for him, but how do I get him the help, how do I help someone who refuses to believe they need help.

Hi Mel, Thankyou for your reply, Letter came 21st of December, Which of course made Christmas most enjoyable, the worry of it all has not left my mind, I have till 12th January, to get the reply back letter is just the one that asks if your intentions are to claim PIP, broaching him with it has clearly indicated that is not going to be an option, to demonstrate the fact here is a chat transcript of the last 30minutes. Son saw the paperwork out because I rang them this morning. Son......."What are they?" Me.........just the paperwork that I need to sort out....Can we try this again and have a civalised conversation about it on how you want to proceed. SON......ARMS UP IN THE AIR.....SCREAMING AT ME.....I TOLD YOU.....YOUR NOT USING ME FOR MONEY! Me........Trying to explain that this is not the case, that he would receive the payment. SON.....DON'T YOU GIVE ME THAT......I DON'T NEED ANY HELP!!!! scream crash bang wallop. round the house. ME.......Christian, don't talk to me that way, (I must admit I got a little angry at this exchange) at his suggestion that I am trying to use him for money...Very much not the case. I would just like to retain carers, as that is what he needs help with. Me caring for him. So the next exchange that explains my responses to the next exchange... In the next breath SON.....Can you make me something to eat, Me....(still angry and hurt), why you don't need any help? you will have to do this on your own now. SON.....DON'T GIVE ME THAT YOU COOK FOR ******* (STARRED OUT 19YEAR OLD SIBLING) Me....She looks after herself. She cooks for herself... SON....DON'T GIVE ME THAT, WHY DID YOU COOK HER A MEAL LAST NIGHT. Me....it was a family meal, (full roast dinner) if she wants a snack she cooks it herself. SON....YEAH YOU TREAT HER DIFFERENTLY THAN ME., I WILL STARVE....DON'T MATTER..... Me....come to the kitchen and I will teach you and stand with you whilst you do it. SON.....TOP OF LUNGS SCREAMING AT ME......THATS RIGHT....YOU LEAVE ME TO STARVE, DON'T MATTER I WON'T EAT. So crying over fried eggs of all things, I made him two egg cobs, he just would not understand that, cooking a full roast is far more different than getting yourself a snack. The last thing I wanted to do was take care of his needs, anybody else you would leave them to it, and make them get there own, No chance of him filling out any forms, part of the problem is that his father, my exhusband has been in his head for years telling him hes not autistic, and i am only trying to use the benefit system. He has been non supportive all the way through bringing him up, myself and my now husband have dealt with everything. Social are not involved, I was told that the social services would not help because of Christians upcoming age, We were handed to Child behavioural, and 123 magic when he was 14...123 magic for a 14 year old. Was never going to work in realistic terms. On the work experience front, I did try but homelife again prevented that, I have one thing in my favour, I managed to secure some qualifications, I did my ICQ for IT USERS level 1 and 2, database spreadsheets and so forth, and I have been trying to get my maths and english done, to help me on my CV, I currently have level 1 Maths but I am in the middle of Level 2, the college would not let me do my English till I finished the Maths, So looks like I will have to give that up as well. The only thing I can see is, if its picking up litter anything, I will do it, but looking through the jobs, I am underqualified to even be a cleaner these days. So much pressure for me to come up trumps and get on the playing field. Just speaking to people is so overwhelming as I have not been out of the four walls for years, my family are in Manchester, I live nottinghamshire. It has always been me the four walls and caring for my son. The big issue for me is my son making the decsion based on teenage asperger drama ideas, and not comprehending what me staying at home as his carer has entailed all these years, and what help he actually needs. He is trying to get into college at the moment, academically he has the requirements, but his social skills let him down, so the first interview did not go down well, thankfully they have gave him another chance to prepare himself, but if he does get into college its the small things, like taking a shower before you go, so that you don't smell of the urine that you have slept in. His meals, time management to get there, that the world is not on his time. He is saying he does not need someone to oversea these things, yet the reality of it. He does, because if that is the case why are all these things not happening now... If I thought he was capable to be left alone for a day etc, I would have done just that. There was neither the option for me to take night work as his relationship with my husband had crumbled to such an extent that like I said before we nearly lost our marraige, thankfully that part has gotten a little bit better and their relationship is much better. The other day, he had a complete meltdown on a very rare visit to his grandmothers house overnight, Why because they were watching casuality, I received a phonecall, saying he would not come out of the toilet, because it was on.....Its something we never watch here so its was a new one on me, after a couple of hours in the toilet, they managed to coax him out. I have no idea why he did it, or what panicked him. I was not even there, even though he sometimes acts and looks capable, there is so much more that goes on that you just can't rationalise. Yet he is making the judgement that he does not require help. I am witless to leave him, to his own devices. Yet in a real world, it is not financially going to be possible. Thats even if someone will give me a chance. I possibly should come back to this thread when I can voice my feelings better, after another tirade, I fear my thoughts are quite disjointed.

Big Sigh, I am sure you have all come across my situation so many times, I am at an utter loss which direction to go, I have been a long term Carer to my Son, He was diagnosed at 3.5 years approx 2001, He will be 16 in May this year, The diagnosis on the letter from his specialist was written Autism, this then changed through the years to Aspergers as more was learned about the condition, it was picked up on a health vistor review and they referred us into the system, with his non communication, it was just echolia. Through the years we have faced many many hurdles, Skin sensativity to weather, Wind or the rain freaked him out, so he would not walk in it or had a massive meltdown to the point of vomiting School run 4 times daily, was exhausting at that time,, all the usual difficulties associated with aspegers, Panic attacks which he was put on medication for, He still has night time enuresis, etc etc, I will not list all the difficulties, but suffice to say I feel totally out of my depth with the new changes and decisions, He has a indefinate DLA award, which they have now wrote and asking him to apply for PIP as he has turned 15 and 7 months, I was expecting this, but not so soon, When I first read about it, I was under the impression it would be 18, and I hoped that My son would be more ready to function, anyways to cut along story short, I have tried to speak to my son regarding his descion on claiming for PIP, I say spoke to him, two short snippets of conversation as my son gets angry with me and refuses to speak about the matter, he is 6 foot 2inches tall, and has agression issues, I have had to lock myself in the bathroom to escape from his tirades in the past, so conducting a conversation of this nature with a teenager who can be aggresive in nature has been not so pleasant, he hates the fact that he has aspergers, and won't admit that he needs help, but the reality is that I cannot leave him to care for himself, He needs encouragement to shower, he will lie in a wet bed for days if I let him, not caring that he is lying in urine soaked sheets, he cannot cook for himself because easily distracted. Meltdowns, Budget handling. Time Management. Getting him up. So many more issues, that come into the day to day life of caring. My son has flat out refused to entertain claiming, yet he is not capable enough yet or mature enough to understand the life choices he is making not only for himself, His DLA enabled me to support him, on his needs. I have no family support at all, his caring has come down to first for along time with myself, then when I remarried it has fallen to myself and my husband with no outside help, He is not ready to fend for himself yet, but financially these new changes and the choice my son has made is going to force me into a position where I will have to leave him on a daily basis on his own to care for himself. I am scared half to death on having to do this, because he is just not ready. Yet my hand is being forced into leaving him. I feel utterly despondant as a mother, i gave up all career avenues, doing the right thing on making sure he was safe and looked after, in the time that I have been caring for him, he has brought down two ceilings, set fire to an electric blanket by accident, and blown all the electrics by flooding from the bath, I had to stay at home and care that his difficulties were met, The last ten years have been hell, no social circle, no friends. No career. So now I am left with my son making financial descisions because he is going to reach 16, he does need the help, I have been desperate to work for years, yet his needs prevented this, So the years passed, He will not attend an assesment for PIP, this much I know as just getting him to any hospital appointment, has been a shouting match, weeks and weeks of I am not going, I have no idea where to even to start, How do I explain such a gap in my CV? Bring your CV, ok I will hand you two pages of blank paper. On a personal note I feel, worthless, my confidence level is non existant, How much more do you have to give? My life continues to be ruled by Aspergers. I may come across of Whiney, or Self indulgent, truely this is not how I wish to be perceived. I am just lost, We have nearly self destructed as a family, due to the aspergers, my son stopped talking to my husband for a year, we have been involved in many family services, which he refused to attend. He is vulnerable and has needed alot of help over the years, but now just because the govenment has declared him an adult at 16 it means automatically his needs are to be forgot. This is against my nature, I really thought I was doing the right thing giving up my life so his would life would be met. Now I just feel so worthless, the pressure of having a difficult homelife has took its toll through the years. I just don't even know where to start. How do you word on a CV Whilst the rest was creating career and prospects you was being attacked, verbally abused, up to your elbows in wet bedsheets, Manic with trying to deal with the pressures of Aspergers, but still got up daily to face each battle? I can't even give two referees because I don't know anybody. I know I would have not have worded this at all right. Please be kind, as I really can't cope anymore with the pressure. I am weeping now as I speak.

I phoned his learning support team to notify that he was now on Medication and explained the panic attacks the key symptons, They was very helpful to be honest, they put a structure in place where if he thinks he is having one he can go to the sensory room, The school is mainstream but pride themselves on having many other special need pupils weather physically disabled wheelchairs or Aspergers Autism, They provided me with an email address direct to the support team so I can contact quicker, the whole school works on an email system between the teachers so gave me direct quick contact if there is a problem, I believe he was on his way to a lesson with it being 9am. As he would have had registration first so I presume he would have been ringing me on his way to his lesson from his mobile. I am awaiting an appointment with Cam as he fell out of the system somehow and I have just had to go through the whole process again.

Hello again, Quite an interesting reply Baddad, and food for thought, I actually agree with all your comments and I can see sence in what you are saying, I am just looking at PDA at the moment as I do not know much about it at all other than what I have been reading today, I do believe that children should have boundary and structure and always endevoured to try and provide this there is always a consequence to an action by Christian weather it be verbal or removal of pocket money or television for a night etc. Hmmmm our family dynamic is quite a complex one and there are a few things in the mix, I suppose I asked my husband to back off is Christian is continually expressing that My husband is on his case so to speak, I do think that the things my husband asks Christian to do he is capable for his age and reasonable but myself and my hubby see things differently on what battles we sometimes choose, Also I do have Christians Real father in the mix who is a piece of work himself, it was a very bad relationship that I do not need to go into here but the man is very manipulative and influences Christian to disrepect my hubby ie, you do not have to listen to him he is not your dad! I am! etc etc, If it was up to me he would not have a relationship with his children but I know the importance of a child maintaining contact with there father for them, also I have no legal power on my side, Fathers have rights now, which I totally agree they should but situations are not always as cut and dried as they seem on paper. Asking my hubby to back off was basically a last resort for me as things had got that bad last Friday that we decided that we could no longer go on as a family, It was the best thing to disolve the war that was happening between them so to speak, I do not like it all but with Christian presenting with Anxiety I was at a loss what to do. Taking the full responsibility meant that Christian could not complain my hubby "was on his case". You are right this world is very different now than it was 20 years ago now you are judged for being a parent and have been critised for being unfair when I have had to put consequence in place for his actions. An example On the Scarborough Visit I went to pick up Christian in Manchester I live in Nottingham, When we arrived Christian started to get in an argument with us and he was shouting at us and dictating to us etc I was addressing this situation with him, saying it was unacceptable for him to be talking to me like he was I was his mother and he is 13 years old and christian started to cry, my stepfathers sister walked in and then had a go at me saying it was him being a teenager all the usual exuses but an argument ensued between us because she was asked politely to stay out of my business but would not take the hint, She said alot of hurtful comments which basically amounted to because he is a teenager I should let his behaviour go and I was in the wrong and a bad mother. So We left after only ten minutes and travelled back to Manchester. I was shocked and upset and also my head was in a spin as these Panic attacks were the first time of happening to that extent, All this is in my head, am I a bad mother? am I letting a situation get out of hand? Am I failing my son by somehow not recognising his needs or being there for him? Whatever the reason for the behaviour, anxiety, defiance, manipulation from the ex, Aspergers, Teenage hormones, I honestly do not know what is the best avenue to follow. I do welcome the advice or critique I can see it is well meaning, not vindictive of which the family members was.

Thankyou Baddad for your reply, Christian has now been on the meds for Ten days, There has been no stressful situations in the house directly with him, mainly because I asked my husband to back off and let me deal with Christians behaviours something that we have never done as a family, when we got together I never put divisions in place that I was the only parental displinarian because I do not believe in it, I asked my husband to take me as a package therefore I could not pick and choose when I wanted him to be a parent, We try to show a united front in front of the children and debate it when they are not around if there is disagreements between us, It has been so difficult to work out the battle between stepdad and 13 year old aspergers raging hormone teenager, It has also been hard on my hubby because he has been a parent to him since 4 years old and yet now in effect I am asking him not to be a Parent to him, Christian is still running his mouth towards my husband and I am doing my best to address this when it happens and let Christian know that it is not acceptable for him to talk to a person in that manner, So my husband at the moment is being spoken to very disrespectfully without a right of reply, Not very healthy for any family unit. My head is blitzed by it all, So given that there has been no stressful behaviours that christian has encountered, I woke him up at 7am this morning for school and everything ran smoothly Christian was in a good mood a bit tired but generally his demenour was good, he likes to have space in a morning to get ready and for me not to be in his face like a mother is getting her children to school so when I have made sure he has done everything washed brushed teeth, sandwiches in the bag etc I usually go upstairs and let him adjust to his day, this is a stratagy that has always benefited the both of us so there is no arguments between us in a morning. I came downstairs at 8.30am to remind him that he has to be in school and should be walking or he was going to be late, I found him almost catatonic on the sofa, he complained he was tired and feeling sick, I told him he would be ok and it will shortly pass and he left for school, but alarm bells were going off in my head anticipating what was next going to happen, sure enough 9am I receive a phone call from him complaining that he feels sick and his throwt was closing up, I again reasurred him he would be ok and to go and see his tutor (his main form teacher) as I had been on the phone to school to his learning support team and advised them on Christians Panic attacks and that he was now on medication, so they have procedures in place to deal with this, I cannot allow him to keep coming home for one the law says he has to have an education, I was worried that this would start happening. whilst researching though I have been looking into PDA I had never heard of it before, and It does describes Christians behaviours exactly, I believe Christians diagnosis of Aspergers is correct all the traits that he had was definately Aspergers poor eye contact using me as a tool, lining up things, communication delay, fears and phobias etc, NAS believes that you can have Aspergers and PDA yet PDA associations say that it should be a seperate issue. Christian is displaying unreasonable responses to reasonable requests alot of the arguments that happen between my husband and son are over reasonable issues. example Christian has alot of nosebleeds doctor says because hayfever damages your blood vessels in the nose so christian will find anything to stem the flow of blood tissues socks then leave them strewn over the floor, when there is a bin at the side of him, these can sometimes look more suited to be in casualty my husband sees his room like this and asks him to pick them up and put them in the bin, It simply is not nice or hygenic to have all this on the floor when he is perfectally capable of putting them into a bin, This then creates a war with my son as he chooses to be rude and uncoperative which escalates pretty fast. On my original posts I do say that he is controlling how the family works with his non compliance at simple things, having never heard of PDA till today it is certainly very interesting to me, Does anyone have any thoughts? I also want to stress that I am not that person that has to have a lable to explain my sons behaviour Some is just a teenager trying to push his boundairys in preperation of getting his independance. Update Christian has now come in from school in a great moood smiling etc, talking about how windy it is today I have even managed to broach a subject that is quite embarrassing for any lad of 13 and managed to have a great successful conversation with him about it, looking at his internet history Christian has developed abit of a curious interest in sites are of a porn nature, something I would expect a healthy teenage boy to be curious about, Told him its natural to have curiosity but that really is not what sex should be about and its natural for him to be curious or even like what he sees but if he has any questions he can always come to me and I will always give him a true answer without embarrassment, if he was embarrased then I could get him a book that explained changes and sex, I think I have handled it right, that being said, I asked him if he went to see his tutor and he said no he was fine it went away. To echo my thread title URGH!

Thankyou Suze, I think I am more beating myself up wondering if I could have handled it all better, though weather we have medical conditions or not Life does not have a manual, because we have had calm years I forgot what a wonderful board this was for support and guidance, I will be sure to keep being a part of it again.

Hello again, Thankyou once again for all your replies, I did not want to come back to this board till I had taken Christian to the Doctors today, I feel so terrible and feel like I have failed my son, The Doctor has diagnosed Panic Attacks, and has put him on Citlopram once aday, he says that because the attack happened with myself as well that is why he thinks they are Panic Attacks, if it was confinded to the visit up manchester then that could be explained away as being in a strange place etc, I am not sure what my feelings are today other than I need to make whatever Christians Stresses are more comfortable, this does not mean however it will be a licence to run rings round me as I still do not believe that Autism has to be the excuse for everything. Today has been fraught hopefully I have managed to get the divisions in the family on parr, I still really cannot get my head round it all but I cannot ignore that my son now will be taking tablets. On one hand anything that will take away whatever fear is feeling whether it be hayfever, stress, anxiety I hope the tablets bring Christian back to the level that I know he was at but it my aim to get him back to the level. I wish there was a Crystal ball when events like this happen I just feel like I have let him down. :crying:

What I am trying to say is that there is some occasions where it seems beneficial for Christian to avoid situations where he does not want to join in where it seems that he can quickly say I am hot I feel sick, The picnic occasion he started to complain in the car, knowing from the outcome in Manchester that the reward is to not do the event, If ignored he will then esculate the feeling to crying, can we go home, almost like a terrible two tantrum when they are not allowed sweets etc, He has never had a so called panic attack with me but has before complained of feeling sick etc cannot breathe, so I took him to docs thinking it could be asthma sp?, he has never gone into a full blown hysteric where he cannot be calmed down, but this did happen in Manchester and again the next day, I am very concerned and worried that I may overlook a geninue case, but the situation is now controlling the family life to such a degree that we as a family are at our lowest point, and realistically not something that we can overcome and still be a family unit

First let me say thankyou for all replies I am sorry I have not been back sooner to be honest I am washed out and drained, so please please bear with me if I hope my post will come out as I want it to, I have tried to take onboard all the opinions, I am fighting with my own head and cannot work out the ifs and buts, On the return from the picnic yesterday I tried to cover all bases when we got in by giving him his hayfever medicene, it was a just in case it is that precaution, then he came down feeling fine, and he then concluded himself he felt better and it must have been his hayfever, I am not convinced however he had any hayfever symptons, We successfully took christian out today, I was determined to try again with him as I know he is quite capable of doing the walk and picnic of what I have previously done many times, I am not sure if Christian experiences his hayfever symptons and misinterprets the sypmtons for something bigger so before we went I made sure he had taken his medicene, there was no symptons at all present, I prepared him like advised above that we are going for a picnic etc and I did not want to leave him behind I wanted him to be part of the family experience. No drama at all from him, and did a good hour walking an interacted fine with me as what I would normally expect, I understand how Aspergers has social communication issues, its not that I do not understand anxiety and stressful situations with a child/teenager/adult with Aspergers/Autism, I have always believed that you can give your child excuses for there behaviour because they have been diagnosed I try not to do that, I have always tried to bring Christian on rather than keep him at a level because of his Aspergers but also be respectful of what he finds difficult, and I think he has excelled in situations by his own achievements not always by our guiding hand. The difficulty I am finding like this whole thread has so many different opinions that is what it is like in my head, As a mother there is something extreme going on if he is crying and hyterical that he is going to die, That I accept there is something that needs addressing in the way Panic Attacks should be addressed, he is handling situations, but yet I do find myself agreeing that it can come on occasions where it seems that he has developed a routine where if he feels a little bit unwell or Hot he can get the reaction of what he wants not partispating, When Christian was younger a hug was out of the question for a goodnight kiss he would kiss my hubbys hand (never understood that one) and just more or less head butt me, but through the years he became a loving boy who would give you a hug at the drop of a hat, tonight I received one from him, I am a very touchy feely character and both my children I tell them I love them many times aday they accept that I am a softie and sometimes they joke about it but they are always told. I am confused because like I keep saying Christian is controlling situations of which he has never really shown any difficulty to, He had a phobia of pigeons, because of the surprise flapping, he has now conquered that phobia if he was doing the sickness thing over say walking through the marketplace where they all would be I would understand why he would be complaining of being sick, The problem is the cause comes out of nowhere, I know he has always been ok with the places he has been so I do not think I am putting him in a stressful situation, Baddad I agree with your post entirely, and I would more lean to your idea, yet I also understand how someone with Aspergers can have anxiety like others have said. If I ignored his request of I am feeling ill, he then works himself up that I cannot breathe and crying, of which then I am trying to stop him feeling Anxious, so at which point we came home. I am drained because it seriously is effecting family life and I am the sort of person that will look for any answers to try to make the problem into a positive outcome, his behaviour is causing divisions in the family whether it is of an Aspergers Nature or not, hence why I am tired and drained. I really do not think I am explaining myself right at all.

I think the problem in all this is that for many years we have been able to successfully get him to intergrate and socialise something what he has been very happy to do, he is in main stream school and an example is that he just recently visited drayton manor with school and come home with a picture with him at the top of a ride the one that is really tall and it drops rapidly to the floor, now for years that is something that would never be an option for christian in his younger years he would not walk outside unless we sort of covered his ears kind of like a clutched headlock, this is something that he implemented himself he would put his head into our arms as we walked, it cut out the noise plus gave him the sensation of being safe, now like I say he can travel indepently outside no problem and has been presenting quite well now except for in the last couple of months it is like he has regressed, which I do know can happen things we have been doing for years suddlenly has become a problem, I am not sure what to make of it all, the event that happened today I brought him home but said no tv or computer as yes I agree that would have been a reward, The family had had to forgoe our enjoyment I was not prepared for him to get his enjoyment of him being in his room on his computer and xbox, I have looked at panic attacks and I am really not sure, it does seem at times that he is playing on it, to get his own way but then today before he went he was complaining of having a cold a little sniffle which was probubly his hayfever, so he had no intention of partisipating right from the start, I took his hayfever medicene with us paracetomol, vicks nasel and anything else I could find that would elevate the symptons if they arose to into anything. Everything that we are doing with him he has never had any problem with other than his early years of which he was able to overcome. I feel that I am not expecting him to handle something new as the situations he is in he has enjoyed over and over again we have never faced problems on going for a family outing or walks, behavioural issues in the home has been our main fight and nocturnal eurisis we have always with coaxing and explanation been able to find comprimises with him, and dealt with issues if they needed to, I am just not sure how much is Aspergers and how much is a teen trying to push boundaires. I probubly sound like I am coming across its me me me I am not quite able to put my thoughts into words succintly, I do understand what difficulties he faces and how he can feel about things where others would not be phased but all the things that are happening now is things that we conquered years ago. I am concerned that if it is not genuine he is going to use this one and not go to school, just before the six week break up when we had the heatwave he rang me from school demanding to come home and gave same symptons, I rang up school to let them know the situation the reply I got was all the children was feeling like that, Its hard to know when a child is swinging the leg at the best of times, As a mother obviously I do not want my son to be uncomfortable and ill, but also as soon as he has got his way he is fine again. I do not want to do him the disservice of not believing him but in an ideal world he cannot just say he is ill and refuse to partispate ie school etc. I am so confused.

Hello Board, Well its been a few years since I last visited this board, First let me introduce myself I am Shelley parent to Christian who is now 13 with Aspergers, he was dx at 3.5 years, short background description of Christians History he was diagnosed because when a health visitor picked up at 3.5 years that he spoke with Echolia, had all the usual pointers for dx. He was skin sensative (rain would hurt his skin and wind etc) and the outside world was a real problem for him to be in where he would he could vomit at will. In the years that followed we were able to progress Christian where now he can quite independantly travel about on his own. In his early years it was a total nightmare I feel from ten years to 13 years we had calm years, now everything has gone to pot and I just do not know how to handle this new problem or routine that he has introduced. Christian has started to complain for the last couple of Months of feeling sick all the time, I have had him to the doctors once already and Doc really could not find anything wrong with him other than a bit of hayfever, the problem being is that he is elavating his symptons to the point of hysteria. It all started when he went out for a meal with his grandparents, My ex husbands family not mine who live in Manchester, They are the sort of Grandparents that overfeed them and let them induldge in sweets and cakes etc, so this had been happening all day and then they went for a meal, Meal was ordered then Christian decided he felt sick and faint and went outside the restaurant for air he decided that he was not going to go back in The family had already ordered the meal so Grandmother took his outside for him to eat, my own conclusion of the event was that he had overindudulged and did not want to face eating a meal so he put on a song and dance about feeling sick, Grandmother babyed him and he got his way to not partisipate in the event. I have been promted to this board again over an event that happened today, but more about that later, I have been Christians carer since he has been diagnosed and not worked I would dearly like to but I do not have a support system around me all my family lives miles away and Christians needs have to come first, We do not get chance to go out and stay at home with the kids 24/7 Myself and my husband who I should point out is Christians Stepfather and has brought Christian up since he was 4 years old, have not been away for 3 years or had any quality time for our marriage, previously we have been able to take the children abroad but Christians attitude has got that bad that we will not go away again with him It is more stress to go away than it is to stay at home, Why spend thousands of pounds for it to be a misreable holiday, it was our anniversary last week and for the first time in ten years we decided that we needed some respite and a break for ourselves. So we booked a 3 day break to Scarborough, My son went to stay with my mother which he has no problems at all in doing and feels comfortable there. It was arranged with my sister who also has a child with Aspergers who is 7 to stay over night, all was going well, I am on my first night at Scarborough and I get woken with a phone call at 12.45am its my son on the phone complaining that he feels sick and light headed and he was panicking he was going to die I took the phone into the bathroom and sat on the toilet for half an hour trying to calm him down. My sisters children ended up taking him downstairs and they played xbox with him at 3.am (which is something I would not have done) but I was in Scarborough and he was in Manchester, The next day my sister was taking him to the pictures something he does with his father quite regular so again not out of his comfort zone at all, They drive 45 mins in traffic and she pays £32.00 to get in at the very last minute he says I feel sick and light headed and will not go in. I get a phone call again what shall I do she had her child with aspergers with her and if she did not take him in that child would have had a melt down but Christian flat refused to co-operate I had to try and ring my mother to go and pick him up lots of frantic phone calls where eventually he was picked up and taken back to my mothers house to which he then suddenly became ok again, My mother took him bowling no feeling sick, he then was asked if he wanted to visit Manchester and was given £10 spends to go he agreed he would like that very much, they got in the car travelled down there last minute he decides he is sick and asked to go home which they duly did, on the way back he is fine but passes PC World and is hinting in the car to go in as he has some money for an x box game. Now to the event that has promted me here, Today we had arranged to go for an outing nothing special National trust walk and a picnic something he has done since being a baby with both grandparents and I so I know it is definately not out of his comfort zone, and in summer months something we do at least once a week to spend quality family time together, we packed a picnic something chairs in the boot, flasks, got in the car we was not out of our home town before he started with the I feel sick and faint business, crying so we turned back I headed straight to the doctors and got him booked in for another appointment for Friday, as soon as I got back 20mins when we was in the house he came down and said he felt fine now, My husband is at his wits end, he has two weeks off but we are being dictated that we have to stay in the house, My husband texted my daughter at work and asked her if she would like to go out for a walk with him because he did not want to stay confined in the house, I have had to stay at home when quite frankly I wanted to go as well, I honestly feel that he is doing this when he does not want to do something, but now he has virtually made us prisoners in our own home, and is splitting the family up with his behaviour, Physically I look at him he does not display any sympton of feeling ill no fever etc, I have looked at all the options of anxiety but if it is something he likes or peaks his interest he is fine and no problems at all, I am well aware of Autism/aspergers difficulties and have always managed to manage his behaviour but I really do not know how to handle this one, we are stressed beyond stress and the way things are going I am not sure if my marraige will survive intact, I understand teenage hormones are mixing, as well. His behaviour is so difficult to manage now, He had an appointment with his Autism doctor and point frank refused to be examined, and ran out of the hospital, we have always been able to go to these meetings with ease. There is so much more I need to say but I do not want this post to be to long of which it already is. I guess the question I am asking is how much do you let Aspergers interfere in your life, we have always been able to conduct a family life around his Aspergers and accepted his difficultys and worked round them, but in the last two months it now is suffocating us.

This is what frustrates me you can follow all the guide lines but ultimately its down to the differences in each child what will work for them, In our case definately the alarm did not work we also used the one that tucked into the underwear, We were told I was not allowed to turn the alarm off for him that he had to do it himself, as he had difficulties with noise in the outside world anyway we really struggled with it, the alarm just sent him into a major meltdown he would wake up confused even though he knew how the alarm worked and what it meant when it went off it really sent him into a state of distress where he was so confused he could not shut off the alarm because he was so much in a state of panic and I would have to calm him so it worked against us. Also with regards to the medication, again I saw no difference my son had taken note when at the doctors the advice he gave me on the side effects of the medication ie not to drink an hour before the medication was given because could cause serious side effects which in turn left him panicing when he took the medication whether it was safe to do so. This has now left him with a fear of medication in general where he has to read the labels and back of boxes to make sure I KNOW what I am doing. I was also told to remove all nappys and to NOT use dry nights at all, (where as others advocate using them). this was giving a signal that it was safe to wet. I encourage him and I make sure he follows guidelines placed thats all we can do at the moment I am just hanging in there with the hope that all will magically fall into place at some point. I don't think anyone is right or wrong it depends on the child in question and lets face it we as mothers or fathers or foster carers and guardians of Autistic children we are always facing critasim (sp?) from outsiders who know no better. I think until we have all walked in one anothers shoes its not fair to judge. It is just not productive.

Yes I agree with sadie each to there own preferences and opinions on medication unfortunatly it did not work for us but as I keep saying each child is different. Speak to your doctor about possibilities. take care Dix

Hiya, Aw I know just how you felt I have replied in depth on your other thread but just read this one as well, I would definately try to have your DLA reviewed My son is Middle rate with lower mobility he was Higher rate care for the first 4 years but they dropped him down to middle and told me I should lift my son. I accepted the middle rate after speaking to his specialist who told me it would be hard to prove otherwise and he thought it was about the right level for my son, but I do think that you should be entitled to more help than lower rate. If you need any advice just holler or just someone to talk to etc. dix

Hello again Sheuk, I do agree that this can be very difficult to deal with on all levels, For his bedding I basically deal with a 3 step method, so three of everthing (all except the quilt, Argos do quilt sheet and pillow plastic protectors) One in the wash one drying and one on the bed. I use Freecycle for beds as you can imagine he can go through quite alot of mattresses because of smell problems etc, obviously I bleach and disinfect it but eventually its time for a new one. Family fund came to my rescue when my washer stopped working and they sorted me another out very quick. My son does drink squash occasionally but his preference is plain water of fizzy water. I also have followed the advice you were given on not giving him acidy cordials etc. Each to there own but made no difference with my son whatsever. I guess what I have found difficult to cope with is the varying advice out there, our district health nurse had him in large adult size nappys till Eight years old, then we saw the Incontinance specialist who took him out of the Nappys. Then they passed us to his school nurse, we have had a bed alarm which did no good whatsover again just caused terror My son has always had a problem with the Loud noises so imagine being waken up in the middle of the night an alarm going off it petrified him each night in the end he was scared to put the alarm on. So then we moved onto the medication again no effect, school nurse came to conclusion could not really help us anymore as we were complying with all advice and still no change and she did not know what else to do so has left us to our own devices. What was also annyoing was being told by DLA I should be lifting my son at night to go to the toilet when his Incontinance, health visitor/nurse School nurse all said that was the worst thing I could do as he would not be going to the toilet when he needs to go or his body tells him to go he would be going when I told him to go if you get my drift. The lovely worded letter I received from the DLA told me basically I was not doing my job correctly as a mother by not lifting him to go to the toilet in his sleep like anybody elses child. I had tryed that in the beginning but stopped when I got the correct advice. I also struggle to deal with attitudes to his problem, My sons Father I am divorced from and I am remarried His father currently lives with his girlfriend in her house. My son sees his dad every other weekend his sister is allowed to Sleep at there house my son did sleep there but I found out that my ex husband was secretly putting Nappies back on my son when I had removed them for a year because his girlfriend did not want her expensive sheets ruining so basically I stopped my son from staying over and now he stays with his grandmother when he has access to him. I have also had my mothers Sister-in-law, when she found out that my son was in nappys tell my mother to take my child for a month and get him out of Nappys behind my back. How dare anybody interefere in something medical with my child. I wanted to give this woman all the literature on the subject of nocturnal enuresis and aspergers and gain Knowledge before she passed judgement on the whys and wherefores that my son was in nappys till 8 she also thinks I am making it up about his Aspergers. My mother would not let me speak to her on it so again for fear of reprecussions I suppose. Again I felt deflated and attacked. I am due to go on holiday to Greece so in that instance I take two Bed protectors the fabric kind with the plastic backing and I change the bedding in the hotel room for one of them and I wash in the shower each time he wets, it can sometimes be quite hard to hand wash sheets in a shower wringing them out is a nightmare with no washing machine etc and drying them on the balcony but hey ho. To Finish off nothing has changed and I just deal with the bedding everyday I have been doing it for that long now it just feel its as part of life as making my familys tea etc, My son is a adorable character who has took this problem in his stride and all credit to him, he is mature in his attitude to his problem and to his Aspergers for that matter I don't mean to and I hope I have not disheartened you as every child is different as you know. Sorry for the long post got carried away with my own thoughts whilst typing and did not realise how much I had typed. Take care Dix

Hi all just found this site again, I have an 11 year old with Aspergers diagnosed at three and a half, came back to research for a family member whos child looks like they may be aspergers as well though this is unconfirmed as trying to fight for a DX. My son has nocturnal enuresis he is now 11 he has never been dry at night and we are still are trying to deal with this problem he has had the usual routine visits from the school nurse attended incontinance specialist appointments. He has used desmopressin (nasal and oral for over a year) though currently he does not take anything because I really could not see any difference when he was using the medication which they said would stop him from wetting so I have chose for now to take him off the medication. We follow all advice given , at least 7 drinks a day last one an hour before bedtime, toilet bed toilet before sleep. From what I have read and been told it is a very common problem with Aspies, My son feels he is too old for star charts etc, to be honest that way of thinking never did my son any good just encouragements and lots of well dones when a dry night is achieved, When the nurse tried to suggest a star chart he kinda looked at her in a way that said look I know I wet I can't help it, I go to the toilet and follow your instructions I am trying and no amount of stars are going to sort this out for me which kinda made me smile. He is very open about his problem and will talk openly about it around proffesionals etc for me my experience is what I have learned from my son please don't treat me like a baby. I was told by the incontiance specialist that people with aspergers don't have a part of the brain that releases certain chemicals that suggest they need to go to the toilet, how true this is I don't know as advice changes from specialist to specialist etc. But anyways thought I would chip in. Chin up

My Christian has also come out with that joke word for word His latest chicken joke is why did the chicken cross the road because he got run over Other examples are knock knock who's there dr dr who dr germany Knock knock who's there big, big who big brother why did the cow go with the pig because he wanted to go to the shop all done with a dead pan face but with a mischievous glint in his eye we think his aspergers is his character and our house would not be full of as much laughter.

I am new here so I am not quite sure how old this thread is but I thought I would had my two pence worth my son is nearing 8 from birth he was diagnosed with a reflux could not his milk down at all, at 3 1/2 was diagnosed aspergers I had a great problem for about 2 years of him being able to be sick on cue, mainly when we were out walking and I was not following his routine he would become distressed and be sick in the street. This then adapted itself to the home envoiroment often without a tantrum, I ignored the home ones as I did not want to play up to the attention of it all I just let him go to the toilet himself and be sick, it was hard I feared he would choke or something but eventually it stopped completely. Often I had spoke his specialist about it and my son Christian had been present unfortunately he started to use the information on how to deal with it and used it against me by at anytime when he was in a tantrum he complained I am going to be sick. It was one of the hardest problems I had to deal with in all his asperger episodes because of the general cleaning up when outside. but thankfully we have had not had to deal with it for about 3 years now.

thankyou for your welcome, I am so unsure what to do if I leave it as it is I retain my carers, just dropping a rate will effect our income, not only does dla amount drop but the child/tax severe disability element will be gone as well. Reading through the threads I think maybe I described his bedtime routines wrong or not the best, which really irks me because I knew the tips of photocopying, presenting the worst case seniario etc. I put down on the form he needs 7day care at night, twice needing someone to help him ( I meant changing the sheets and nappy) I also put it took 15-20mins per change, but what I ommited to say that wsa just purely for that not the hours awake after the fact. urgh I could kick myself. I got lost in the form and concentrated on his lack of awarement to danger. As I have just been typing this his specialist has just rang me (he is a brilliant specialist and I can ring anytime for help) and he has advised me to leave it where it stands as he thinks we were lucky to get the higher rate and with someone like my son he would expect just the middle rate and hard to prove so I feel relief now I am going to stay where we are on the middle rate. But he did say if things dramatically change reapply I think in these situations we get so much little help for our children, I am quite happy now that in the specialists opinion we are getting what we are entitled to. The one good thing to come out of all this is that I found this board I should imagine that I am going to be quite a frequent poster. thanks again shelley

Hello all first let me introduce my self my name is shelley and I have two children one girl 11 and one boy diagnosed with aspergers who is 7, I found this board while googling, I have been receiving high rate care low mobilty for him for 4 years, I have just had to reapply and they have lowered his rate to middle care low mobility, I am astounded as he still has the same problems with needing help with bodily functions as he did when I first applied. He still wears a nappy at night he will be 8 in May, through the years I have given it all to get him dry at night. I have had the incontinance health worker/nurse give me advise which I have adhered to. The problem is he urinates that much through the night (with no drinks given after 6pm) that his nappy leaks makes the bedclothes wet which wakes him up that then starts a wakeup routine of tantrums etc difficult behaviour. When I phoned them and they read out the statement of his entitlement, it was written clinically he has no different symptoms than any other child of his age, and night terrors etc happen to all children and it would benefit him if I woke him up to take him to the toilet. Do they think I have not tryed that urgh!!!!! I was in a quandry as whether to have the decsion looked at again, but I am to scared to try incase they drop the middle rate seems looking through this forum that if you get anything these days your lucky. My sons symptons very in many ways some get better some regress, mostly it's the aspects of the outside world now. Blue lights in toilets can cause a violent tantrum, road traffic. I am really mad because they class my son as on par as any child of his age with the bodily functions, pah my son will never be able to participate in school overnight trips etc due to peer pressure. My son has had to fight so many things in life he had no words at 4 now he has a very good vocabulary though his usage is wrong alot of the time but hey I can hear him. How can they say after 4 years sorry your not disabled enough now when nothing has changed and at nearly 8 hey just walk him to the toilet my son feels frustrated enough by it, ripping up his wet nappys at night. Sorry all I just needed to vent, I am not even sure this post reads ok as I bearly have read what I am typing.