Jump to content
Sign in to follow this  
dixie

Worried and very concerned......Don't know how to help....

Recommended Posts

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.

Edited by dixie

Share this post


Link to post
Share on other sites

Hi Dixie, so sorry to hear about the problems you are having with your son. You don't say what he does with his time, is he still at school or college? Is this a special school or college if so? Could you talk to his teachers or helpers there to find out if they are also concerned about him? It does sound like he is struggling to cope at the moment and is very anxious. Does he have friends he sees or other activities he goes to or is he mostly at home with you?

 

In the first instance you could make an appointment with his GP and go by yourself to discuss your worries about your son and ask for his/her advice on how best to go about helping him. I would take a list of all the worries you have written down so that you don't forget anything. Has he any other support at all, a social worker or other agency who deals with him who you could talk to? Does your ex still have contact and is he worried about your lad also? If you could both sit down and discuss together how you could both help, that would be a good starting point. Maybe if you both sat with your son together to talk calmly about your worries, maybe he would accept it more if it came from you both?

 

Hope you can find some help soon.

 

~ Mel ~

Share this post


Link to post
Share on other sites

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.

Edited by dixie

Share this post


Link to post
Share on other sites

So sorry to hear this, Dixie. As I read more of your post I began thinking of schizophrenia, and then you mentioned it too. To me, it does sound as if your son is having psychotic episodes. I have a cousin with schizophrenia, who is almost certainly an undiagnosed aspie too, and I was closely involved in her life at the crisis time when she was 16-19. I saw all the distressing signs, and was her only visitor to the hospital where she stayed for a few months. She was a very quiet, reserved child, but her personality changed dramatically at 16-17. Like your son she lived in her room, and never used foul language until then, but unlike him, she used it in front of her parents, became violent, smashed shop windows, attacked police, etc. The good news is that for 13 years she's been happily living with a partner (who also has mental heath problems), accepts her illness and always takes her medication (crucial). She's never shown signs of her illness in all that time, and these have been the happiest years of her life.

I've also witnessed manic episodes in two women with severe bipolar disorder, and found them quite frightening - so I know exactly what you're going through. I knew these women very well, but no longer see them. They both deny that they are ill, and frequently stop taking their meds, which results in them being repeatedly sectioned. (I've spoken to many others who suffer from psychoses, so by now I feel I've learnt quite a lot about this).

It's so important that you see a psychiatrist to discuss your son. He's developing these symptoms at the typical age of onset for schizophrenia. I'm not saying he has it, but if he has, the sooner he's diagnosed are receives treatment the better it will be for all of you.


Edited by Mihaela

Share this post


Link to post
Share on other sites

From your post I also notice OCD as well as the Aspergers. My son is diagnosed with an autistic spectrum disorder and also Obsessive Compulsive Disorder.

 

This is a link to the OCD-UK website, explaining about OCD http://www.ocduk.org/understanding-ocd

 

Many people think that OCD is just about obsessive cleaning. It isn't.

 

My son has contamination OCD, which is basically fear of germs. There are also other aspects to his OCD [intrusive thoughts] and other obsessions, but his main one is about germs and contamination.

 

So you would think he would want his bedroom clean and tidy. But no. The OCD obsession with my son [and alot of others] is that by attempting to 'clean' you will never clean it all away and so your cleaning actions actually 'spread' the contamination into other areas of his room, his possessions, his house, other people in the house etc.

 

So peeing in a bottle then becomes logical. It is his way of trying to stop any germs he picked up in hospital from getting anywhere else.

 

And remember that OCD is irrational. So it is not just about explaining it to the person.

 

OCD is just like an abusive partner talking in their ear all their waking hours [and sometimes even in their dreams], telling them to do things to keep themselves and their loved ones safe.

 

How do you get someone to get help when they don't want it?

 

I would maybe start with the GP and ask for a referal to an adult service for clinical psychology or CAHMS that has experience of working with adults with Aspergers and OCD.

 

The best place is The Maudsley hospital in London. They do have a unit that does specialise in both autistic spectrum disorder and OCD.

 

Maybe you might find something on the OCD-UK website that you think he would be able to read??

 

He needs to understand and accept that he needs help. That is difficult. My son is 13 and he sometimes believes that his OCD is actually his friend and is helping to keep him and his family safe. But it is heartbreaking to see all the rituals he does [physical and mental], and how upset he can get and how it is limiting his ability to even get out the house.

 

His OCD is also going to mean very black and white thinking. So someone needs to find a way to get your son to understand that people have "opinions", but they are not always right. So his dad might think his son does not have Aspergers [or OCD]. That does not mean he is right. There are professional people that have a much better idea and who can help.

 

However, having said that any help is thin on the ground.

 

Even if he does not accept his diagnosis of Aspergers, that is still a fact. Now, if he has OCD that would enable him access to benefits too - ie. carers allowance, DLA etc. Your son still wants you to be his main carers, without you getting the money to enable you to do this.

 

Could you sit with your son and tell him that IF you need to be at home to help him that he must claim DLA etc?

 

But you being at home 24/7 is also not going to help him. He needs professional help, and for them to give advice to your son and yourself on how to move forward.

 

The only way to address OCD is to meet it head on and deal with the anxiety and stop doing the compulsions and reassurance seeking. That means you have to start with a hierarchy of fears and tackle the smallest and easiest first to ensure your son succeeds. Sounds easy, but it isn't. We are just getting to that stage now, and it has taken us years to get to where we are now.

Edited by Sally44

Share this post


Link to post
Share on other sites

Sally's reply gives good advice about OCD, but I feel there's more going on here. I've more time to make a fuller reply now, so I'll go through the points you've made.

...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.

 

Later denial of an AS diagnosis, or exploitation of a diagnosis, seems to be not all that unusual. Possibly your ex-husband's influence combined with a growing desire to appear 'normal' (especially during adolescence) has made him deny his AS.

 

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.

This would have only made things worse for him. Do you think that this sudden change was traumatic for him? If so, it could have triggered his recent behaviour. (My cousin's schizophrenia was most likely caused by her having a baby at 16. She wasn't ready for it, and was very young for her age. Her parents ended up looking after the child ).

 

...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.

 

I don't know all that much about tics, except that I suffered from very severe tics (sudden head jerking and arm movements) when under extreme stress a few years ago. As soon as the stress disappeared so did the tics. They went on for over a year, and varied in intensity over that time, mainly happening when been spoken to or eating at the table.

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.

 

This sounds like OCD behaviour. I suffered from this too, over the same period as the tics. I still have OC traits, and have done since childhood (mainly of the magical-thinking and collecting types), but they're no longer at OCD levels

 

He is aware he is doing all this, and if you accidently catch him, he tries to cover up what he is doing.

I was aware of it too, but rarely made any attempt to cover it up. It would have impossible anyway. It would happen anywhere at all, often in public, in cafe's, shops, etc. My mother had to look after me and take me everywhere.

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.

This is what made me wonder if he was developing schizophrenia. Is he talking to himself or to 'someone' whose voice he's hearing in his head? Whatever it is, it surely has no connection with OCD or with AS.

 

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.

This sounds as if it could be OCD-related, yet the 'not catching germs from the hospital' could either be a form of OCD magical-thinking or some kind of delusion. OCD traits often have a kind of reasoning behind them. They're either extreme, compulsive reactions to taking quite reasonable precautions, or derived from irrational magical or religious/superstitious thinking. I can't see any link between peeing in bottles and hospital germs. Does he? If he knows it's irrational then it's OCD.

 

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.

Doesn't he realise he's making a mess and causing fire hazard by doing this - and that it should be vacuumed up? If he does, but just can't help doing it, I'd say it was OCD.

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.

 

What change does he mean? It seems as if he's created the change himself. Has he always shown violence during meltdowns, or is it just because he's bigger now that makes it harder for you to cope?

 

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.

It's quite possible. I'm sure the paranoia isn't related to his AS.

He refuses to accept that he needs help. Gets very angry, my daughter is 20 is concerned that he will hurt her.

This is also quite typical of schizophrenia. My cousin is one of 13, and all the others were frightened of her, and were even scared of passing her room.

 

Other family members are now noticing those that did not believe he had aspergers are now noticing his odd behaviours.

The fact that the odd behaviours are recent suggests that they're not caused by his Asperger's. Of course, aspies do change over the years, but as far as I know we don't change dramatically or suddenly unless other conditions cause it. If anything, we change far less than neurotypical people. We don't like change; either in ourselves or around us.

 

How can I get somebody help that refuses to believe he needs help?

Very difficult. We had the same problem in our family when my cousin developed schizophrenia. It was allowed to get to a crisis stage before the mental health services would act - which wasn't right.

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.

My cousin was just the same. It was impossible to reason with her. First of all, you really must see a professional about this.

Share this post


Link to post
Share on other sites

Sally's reply gives good advice about OCD, but I feel there's more going on here. I've more time to make a fuller reply now, so I'll go through the points you've made.

 

...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.

 

Later denial of an AS diagnosis, or exploitation of a diagnosis, seems to be not all that unusual. Possibly your ex-husband's influence combined with a growing desire to appear 'normal' (especially during adolescence) has made him deny his AS.

 

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.

 

This would have only made things worse for him. Do you think that this sudden change was traumatic for him? If so, it could have triggered his recent behaviour. (My cousin's schizophrenia was most likely caused by her having a baby at 16. She wasn't ready for it, and was very young for her age. Her parents ended up looking after the child ).

 

...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.

 

I don't know all that much about tics, except that I suffered from very severe tics (sudden head jerking and arm movements) when under extreme stress a few years ago. As soon as the stress disappeared so did the tics. They went on for over a year, and varied in intensity over that time, mainly happening when been spoken to or eating at the table.

 

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.

 

This sounds like OCD behaviour. I suffered from this too, over the same period as the tics. I still have OC traits, and have done since childhood (mainly of the magical-thinking and collecting types), but they're no longer at OCD levels

 

He is aware he is doing all this, and if you accidently catch him, he tries to cover up what he is doing.

 

I was aware of it too, but rarely made any attempt to cover it up. It would have impossible anyway. It would happen anywhere at all, often in public, in cafe's, shops, etc. My mother had to look after me and take me everywhere.

 

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.

 

This is what made me wonder if he was developing schizophrenia. Is he talking to himself or to 'someone' whose voice he's hearing in his head? Whatever it is, it surely has no connection with OCD or with AS.

 

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.

 

This sounds as if it could be OCD-related, yet the 'not catching germs from the hospital' could either be a form of OCD magical-thinking or some kind of delusion. OCD traits often have a kind of reasoning behind them. They're either extreme, compulsive reactions to taking quite reasonable precautions, or derived from irrational magical or religious/superstitious thinking. I can't see any link between peeing in bottles and hospital germs. Does he? If he knows it's irrational then it's OCD.

 

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.

 

Doesn't he realise he's making a mess and causing fire hazard by doing this - and that it should be vacuumed up? If he does, but just can't help doing it, I'd say it was OCD.

 

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.

 

What change does he mean? It seems as if he's created the change himself. Has he always shown violence during meltdowns, or is it just because he's bigger now that makes it harder for you to cope?

 

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.

 

It's quite possible. I'm sure the paranoia isn't related to his AS.

 

He refuses to accept that he needs help. Gets very angry, my daughter is 20 is concerned that he will hurt her.

 

This is also quite typical of schizophrenia. My cousin is one of 13, and all the others were frightened of her, and were even scared of passing her room.

 

Other family members are now noticing those that did not believe he had aspergers are now noticing his odd behaviours.

 

The fact that the odd behaviours are recent suggests that they're not caused by his Asperger's. Of course, aspies do change over the years, but as far as I know we don't change dramatically or suddenly unless other conditions cause it. If anything, we change far less than neurotypical people. We don't like change; either in ourselves or around us.

 

How can I get somebody help that refuses to believe he needs help?

 

Very difficult. We had the same problem in our family when my cousin developed schizophrenia. It was allowed to get to a crisis stage before the mental health services would act - which wasn't right.

 

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.

 

My cousin was just the same. It was impossible to reason with her. First of all, you really must see a professional about this.

 

Hi Sally Thank you so much for taking the time to reply.

 

Much what you say are wise words, I have tried to reason with him, regarding his acceptance, I can understand why, teenage years are about fitting in, not putting yourself outside the box, by admitting it, he is admitting he is not like his peers. so his ears are shut down at the first word. Though the reality is it does not change that he has got Asperger behaviour emotionally and otherwise.

 

I won't quote all your post. but will quote about the bottles.

 

My son has contamination OCD, which is basically fear of germs. There are also other aspects to his OCD [intrusive thoughts] and other obsessions, but his main one is about germs and contamination.

 

So you would think he would want his bedroom clean and tidy. But no. The OCD obsession with my son [and alot of others] is that by attempting to 'clean' you will never clean it all away and so your cleaning actions actually 'spread' the contamination into other areas of his room, his possessions, his house, other people in the house etc.

 

So peeing in a bottle then becomes logical. It is his way of trying to stop any germs he picked up in hospital from getting anywhere else.

 

I can see your theory that you are getting at, but what confuses me on the reason he gave, he never went to the hospital to visit her, he explained it in case I had brought germs home with him. I was more inclined to believe at the time, that was not the actual reason, as he had visited the toilet which is 3 steps from his room during the day...It was at night he was using the bottle. Which is why his reason did not make sense to me at all. Although he does not like hospitals at all even watching casualty has set off an episode where he hid in the toilet at his grandparents when they had it on. I have never watched casuality on the television so I have never observed him do this.

 

I will post a bit of background from previous postings later in this thread.

 

 

 

Share this post


Link to post
Share on other sites

Again Mihaela, Thankyou for taking the time to post. I will try to answer as much as I can. I am very tired, so I hope that my comments make sense.

 

 

 

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.

 

This would have only made things worse for him. Do you think that this sudden change was traumatic for him? If so, it could have triggered his recent behaviour. (My cousin's schizophrenia was most likely caused by her having a baby at 16. She wasn't ready for it, and was very young for her age. Her parents ended up looking after the child ).

 

Quite possibly he instigated a change he was neither ready or mature enough to handle, he tied our hands, as he would not have attended the assement, or basically said I don't need any help. I have posted the whole saga of this in a previous post which I will post here so it will explain more what was going on at the time.

 

 

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.

 

This is what made me wonder if he was developing schizophrenia. Is he talking to himself or to 'someone' whose voice he's hearing in his head? Whatever it is, it surely has no connection with OCD or with AS.

 

 

He talks to someone, or shouts at them as though they are right at the side of him, for example " Nah I am not having that, if you don't effing shut up I am going to knock you out, or words to that effect

 

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.

 

This sounds as if it could be OCD-related, yet the 'not catching germs from the hospital' could either be a form of OCD magical-thinking or some kind of delusion. OCD traits often have a kind of reasoning behind them. They're either extreme, compulsive reactions to taking quite reasonable precautions, or derived from irrational magical or religious/superstitious thinking. I can't see any link between peeing in bottles and hospital germs. Does he? If he knows it's irrational then it's OCD.

 

I honestly do not understand it either, obviously this has now turned into a fight with us, as I just can't have that behaviour in the house it is not acceptable. I think this is one of the reasons why he will not let me enter his room, in case I see bottles of pee everywhere. He goes to the toilet fine during the day and during the night, I cannot fathom why he is doing it. I have asked, he just won't tell me and gets angry if I mention it.

 

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.

 

Doesn't he realise he's making a mess and causing fire hazard by doing this - and that it should be vacuumed up? If he does, but just can't help doing it, I'd say it was OCD.

 

He is aware, I think that side is more lazyness, or he is trying to keep the nice smelling powder down as long as possible, I have had instance of his room smelling like a rubbish bin, as he takes food upstairs and hides it....We don't allow food upstairs, as we live in nottinghamshire with the open forrest settings etc we have a problem with mice. So we try to contain all food sources to being downstairs. So weather he is trying to hide something in there and cover it up I have no idea. I have gave him till Wednesday when I am off to get it hoovered, which he can handle a hoover, if he does not I am going to clean his room weather he likes it or not.

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.

 

What change does he mean? It seems as if he's created the change himself. Has he always shown violence during meltdowns, or is it just because he's bigger now that makes it harder for you to cope?

 

He thinks I move things around his bedroom, I try very hard not to move anything, but wet towels on plugs etc...If I move them something then is not right in his room. OCD or needs his room to exact to his needs. His needs are very very very unhygenic though....He will sleep in his wet bedding for days. It does not bother him at all to sleep in a wet bed. I fight to keep him clean.

 

 

 

Share this post


Link to post
Share on other sites

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.

Edited by dixie

Share this post


Link to post
Share on other sites

I'm sure this is all very overwhelming for you.

 

When you have a calm moment, can you write down a list of what you want to happen for yourself and your son.

Prioritize them.

 

Regarding Social Services, I think it is different now that your son is classed as an adult.

 

When they are children Social Services often pull the "parenta responsibility" line as their reason for failing to provide any help or support. By saying the child is the parents responsibility [which obviously they are], that should not give Social Care the opt out clause, but it often does because parents are too tired and just don't know what they have to do to get support.

 

Now he is an adult you are no longer 'required' to be his carer. You can if you wish. But you don't have to.

 

So that may mean Social Care DO get involved to support him wherever that maybe.

 

BUT prior to instigating that, I would recommend that you get some legal advice on being an Advocate for your son and on having a legal say in what happens to him. I'm not sure what the terminology is. That would protect you and your son against anyone else saying they were doing something in his interests, when you and/or your son wanted something different. I know there is a Power of Attorney. But I think you need the persons agreement to you having that Power of Attorney. But there is something else when the person is considered not capable of making decisions. Obviously your son can and cannot make decisions in his best interests due to the difficulties he has. I would find out legally how you would have Power of Attorney under those conditions, and what evidence the solicitor would need for that to happen.

 

There are so many things going on in your case, and they need addressing one at a time. But it seems that things have come to a head recently, due to you not being able to seek carers allowance and your son not claiming PIP. There must be a way around this [he should get PIP, and you should claim CA as you are caring for him for the required number of hours]. Whether you want to be the only carer is up to you and your son. His PIP and Social Care could be funding for someone else to be working with him, thereby freeing you up to continue working. Afterall something needs to be put into place for when you are no longer around - which is something all families have to do when there is someone in the family with special needs.

 

Once you have decided on what needs doing, that will help you focus on who [which organisations] could help you to achieve it.

 

Hope you are feeling a bit better soon.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...