Going backwards, or going nowhere!

[loubeeloulou]

We've been 'ok' since new anti depressants kicked in in February. (my other posts here explain in detail about my boy) he is now enrolled with notschool.net and has drifted from interest in it mostly, as expected. He has been on 150mg of sertaline daily since feb and these have been ok, past couple wks have been a bit low, almost like after three months on any Meds he seems to be used to it and it doesn't seem as effective...?

Yesterday we had a breakdown, my fault I guess, I told him to shape himself, get up off sofa, brush his teeth and get some work done on pc. But I said it in front of his brother and sister and he got embarrassed/humiliated/angry at me and stormed off swearing banging etc. I told him I wasn't being nasty I was just trying to say come on let's get going its 2pm! He started to kick his door over and over. So I went upstairs. Mistake two. I shouted at him telling him stop. Basically it ended with his punching his tv that hard it fell over and broke, he threw stuff everywhere, threatened to throw me down the stairs, his dad had to restrain him ....until we were both screaming and crying.

I know I did wrong. I had a meltdown. He had a meltdown and it went too far but I didn't know what to do. I told him that too. That I couldn't deal with this. Someone else needed to.

I rang camhs psychologist was busy, I left an 'urgent' message, no ring back. It is calm now. (his older brother who doesn't understand made things crazy again tho last night by arguing with him about football with him so that added more tears!)

My oldest son accused me of doing nothing. That I tip toe round my boy, that I'm scared to upset it and I should just be truthful and make him realise he has a problem!!!! This hasn't helped as eldest is stubborn and thinks he has the answers!!!

He thinks he should 'see someone's as clearly the people he sees aren't helping. He's right, they're not. He hasn't even been reviewed since these new Meds were started. I've been refused by social services for outreach as they say he would go to mainstream if he went to school, and refused by mainstream outreach cos he doesn't go to school!!'n basically it's down to me to find help. From where? He has nothing. He has school on pc a bit here and there but he doesn't feel able to go anywhere else so school isn't the issue. He doesn't go out. He doesn't have anything other than us and his pc and his playstation. This has been a long two years.

He doesn't take care of himself. I think the last time he brushed his teeth has to be weeks go, he won't bathe he says the more I ask the more he won't. I'm at my break point, and I broke yesterday. I'm calm again and I know I am the only person who deals with it so I'll deal with it but I need some help. For his sake,

I've been given (again DIY) the details of befriend scheme by nas which I have to do myself, for a change. He has aspergers ad clinical depression, no other issues at all. Huge lack of self esteem and confidence .

Any advice? Besides not to lose

My temper, I already know that

[LancsLad]

I am very cautious about answering these type of posts from parents at the moment, I often feel that often all they want to hear are words of comfort from another person in their position and I am affraid I am not in the position to give that. I have been told also that this forum was set up for parents which tends to put me off as well, as a result I often feel my comments might be seen as badly placed, but I am not sure why. Heres my best attempt as I didn't reply for these reasons to your previous post 'struggling', but have read through it again.

 

Asperger's as a condition is a difficult one for the majority of people to understand as much of it is hidden. I havn't got a clue what it is like to live for example as anyone other than myself but know that the way I behave in certain situations is wholly genuine. Some days just because of environmental stimuli can be really exhausting, in taking on new things as times my brain does not seem to work normally and I really have to work hard to make things stick and work. Many situations dealing with other people who are not consistent in their behaviour makes me really confused and at times frightened, will anyone else see any of this possibly not but they might have clues in the way I behave if they look for them.

 

As an Aspie here are a few general observations about what you have said about your son from a personal perspective. The anti-depresants you have named I have been on in the past once the initial phase wore off none of them worked in the long term. If anything they simply flattened me out to the point i was not sure who i was anymore and was struggling to have the mental agility to work through my own issues. There is plenty of emerging research to indicate how the AS brain has very different neurological pathways and areas of strength and weakneses than a 'normal' brain. All clinical trials for anti-depressants on the whole are targeted at 'normal' brains, there is evidence emerging that these drugs may be counterproductive if given to AS individuals. Based on such research I have given up on all medication, has my GP bothered to investigate this area, of course not rather he goes with his initial training of 20 years ago.

 

When it comes to hygeine including brushing teeth. The sensations and smells associated with such activities are really discomforting for me, so I am not in line with 'social norms'. I will shower after exercise and will cleam my teeth from time to time but understand there are many cultures around the world who do not follow our cultural norms in many areas without any real issues. I think for some Aspie's this will always be a compromise area in their lives. When I rarelly go out I will make an effort to fit into cultural norms when in my own home my agenda is one of health and looking after my body, brushing my hair for example does not make me healthier, cleaning under my armpits might stave off a bacterial infection I think there is a big difference.

 

As someone who has had to spend time in a secure psychiatric unit because of behaviour patterns which would be described as suicidal I am aware of what this might mean. I have been a self harmer since about the age of 7 and thoughts about taking my own life started to emerge around the age of 12. I will always be a potential suicide case in my opinion just as an alcoholic will always be an alcoholic. A lot of this is down to personality and once you have gone through a thought process it is part of you just as much as anything positive in your mind. It can not be removed or closed off rather it can be recognised, understood and 'explored'. I know that denial about self harm or suicidal thoughts is the worst thing I can do, it is far better that I explore what is going on in my mind, try and work out why I might have engaged in that process in the first place. From there I can monitor the state of my mental health on an hourly basis if needed and take action when required.

 

As an individual I am also aware that at times when my background stress levels are high and something adds to that situation as a trigger I often go into a natural fight or flight scenario. I am very aware in the past that when I have decided to fight I have hospitalized other people involved in the situation. I know my reaction if seen from there perspective was highly disproportionate and as such I am highly embarassed and remorsefull about my actions, but they were not aware of my hidden stress levels. Often when I go to a more appropriate flight response people often follow me and invade my space this is highly dangerous for my well being. I am prone due to high anxiety levels to full blown panic attacks, again these often seem disproportionate to the trigger actions for people when they look on at events which can and have on occasions led to me being wired to an ECG machine in an ambulance or hospital. In such scenarios some of the hidden aspects of AS can be seen visibly through graphs which give an indication of what real anxiety might look like as they monitor a heart muscle returning to a normal state from a position similar to that of a potential heart attack.

 

Loubeeloulou I am not trying to be judgemental here nor am I trying to particularly take sides, rather I am trying to draw comparisons. In your situation you may want to draw comparisons with other mothers and on the face of it they might appear to be there as responses come in. This next point is not aimed at you but a generalisation of what I have seen on the forum in the past few months, how tentative are those links how much do you really have in common. Beyond the fact that you have children with AS your personalities, lifestyles, likes and dislikes may mean you are not similar at all. I am not trying to dismiss anyone elses comments but to try and put them into context and perspective. What I do not see being asked for very often is someone come onto the forum and really asking can the members out there with AS and who also have issues with clinical depression, low self esteem, suicidal thoughts etc... please help me to try and understand better what my son or daughter might be going through at this moment in their lives so I can support them from a better informed position.

 

If that is the position you want to take and I can not make you, then here are my thoughts based on my limited understanding of your situation. Going backwards, or going no where? This wholly depends on what your target end point is to be honest. I think you need to sit back and say what do you think your expectations are for your son at say 16, 20, 25 and 40 years of age? You then need to sit down and say what is the reality of his condition and how it affects him on a daily basis? To be honest you may not have a clue about this untill you sit down over an extended period of time and talk things through in a calm, rational and non judgemental way. At this point you will be able to compare your expectations in respect to your sons potential to function on a daily basis. If the expectations are wrong whoose fault is that, your sons, norms in society, parental beliefs, brothers ability? Thats not for me to say, but if there is an imbalance in one direction then there is only one possible outcome and that is a feeling of going backwards or nowhere.

 

There have been times in my own life when I have fell short of my parents and partners expectations, I have for example forgotten to do the shopping and cook tea when I had promised to do so in the morning, does this make me a bad person? The reality of some of these times is that I have been under a duvet all day shaking trying to fight off really dark thoughts knowing there is enough medication in the house to end this pain in about an hours time. I have put off the final decision to leave the security of the bed whilst I have worked out what order to take them how to ritually line them up, of how many to take between swallowing them down with squash and how much and what strength and flavour this might be and in what glasses. I have visualised it all and then fought like mad to stay in the safe place for another 10 minutes, then another 10 minutes etc... was my life going backwards at that point? The answer is no it wasn't I was simply trying to maintain a holding pattern untill I reached a point where I could move on and in the context of what I was having to deal with I did a pretty good job as I am still here today. When my partner came home what could she do? Nothing really except say she loved me and understood that this was a battle I had to fight on my own and by doing so I would learn more about myself and become stronger for the experience.

 

I am not saying this is where your son is exactly at but trying to use a strong example to try and get things in perspective. My life has been a series of ups and downs as will anyones on this forum. Having AS and a series of associated conditions has meant that these downs casn be pretty severe and beyond normal values. If you were to slice up my life into time segments of a year or so you might see some very different pictures. For me the segment of life at your son's age was very difficult. It was a period where I was very self concious, I was very aware that I did not fit social and cultural norms. It was a period where I was going through massive physical and emotional changes. I had issues to deal with such a sexuality and how it realated to me. On top of all this I had the realities of AS to deal with on a daily basis and was often exhausted which made me vulnerable to deep depressive cycles which often led to periods a self harm both physical and mental. But at the end of the day I somehow managed to get through it. I never say a doctor let alone a psychiatrist. My parents hadn't even heard of any of these conditions and as such had no reference points, in fact them maintaining their own relationship was about all thye could focus their energy on. In some ways all I managed at times was a holding pattern or to take small steps but in the bigger picture getting through this period was really significant.

 

In going back to my point regarding expectations it is really important that you get this area right in you and your sons life. If expectations are there then you have something to work on in a daily basis but they must be based on real understanding and respect for each other. To go back to my previous example was it right that my partner expected me to go shopping and make the tea, I think so because I hadn't communicated how low I really had been on the days leading up to that incident. So what was the right thing to do? By saying try and get out of bed and I wil go and do the shopping if you feel safe for an hour and then we will both try and cook dinner as that is important as we both need to eat something though we might not feel like it was I feel a good way to go. The expectation of cooking with support and eating was still there, though she knew that because of AS getting dressed and cleaning myself up was way too big an ask and the lights,noise and smells of a supermarket deffinatly a step too far. At the end of the day what did I achieve, the answer is I got through another day and might have stood and stirred a pan or two and ate half a meal, but I think that was good enough that day and something to build on.

 

I think this has to be the attitude with your son. He has potential to have a better life but this will need work from him and support from you, it can't be the other way around it is after all his life. I think you need to have realistic expectations and constantly use these as a reference point. Some days might simply be about a holding pattern, the stresses in his life might not leave him with much energy to take a significant step forwards. This can be frustrating for everyone because the forces which often hold us back are not easily seen from the outside and we should be respectfull of this. This is really important for your son as self esteem is built on self respect. There are days when I simply want an easy day and things my own way. I could say to my partner I am having a really hard day and need my space. She will because of respect for my condition give me this space. If however I know I am lying and just being selfish as an adult I understand I will be eating into my self respect levels and as such destroying my self esteem, this is a really destructive element which can creep into a relationship. As such you need to be brutally honest with each other. I think your son has the potential for this the light at the end of the tunnel being he is prepared to text you about feelings of suicide, which if genuine and I have no reasons to doubt them show a very open attitude and a lot of respect to you as the keystone in his life with whom he believes there might be an answer. In this respect I disagree with posts which said this must be really awfull as a foster career of some very challenging young adults I would have seen this as a massive step in the right direction and one to grab with open arms.

 

My last point in all of this and drawing on experiences as a foster carer is that feeling sorry for ourselves be as parents or as children with AS benefits no one and I would be carefull about the tone of the household in working through these issues. The environment needs to be respectfull, positive, and task orientated. Routine and consistency is key in this and that requires leadership in providing emotional stability. In such environments young people feel secure and as such are more prepared to take the first tentative steps into adult responsibility. When respect is earnt and actions genuinely appreciated we grow closer together as individuals. A big issue is often also about dropping a lot of emotional baggage which hangs around situations as a bad smell at times, we know it is there but not quite sure where it is coming from. Sometimes it is a good idea to clear the air and I would suggest things like writting down all your frustrations as individuals and then burning them together as a family might be a way forwards. There is no need to swop or share them if people are not comfortable with that rather just get rid of them. Your last point was to ask for any advice, besides not to loose! I do not think this has to be a battle but rather a journey where you all will benefit from having rich life experiences which can only result in us becoming better and more rounded individuals no matter what our starting position.

 

Just a few thoughts, not sure if this was what you were after but am happy to expand,

 

best wishes.

[loubeeloulou]

Hi Lancs lad... You make a really valid point actually and I'm pleased you have given me your insight into how it feels going through it. I guess it's like anything, when times are bad we are desperate to seek some kind of assurance that things are going to be ok once again.

I genuinely don't feel supported by professionals or most of my family, maybe why things broke down yesterday.

I agree that people going through it themselves have far more detailed experience than someone who is a parent of....this spectrum is so huge I guess nobody has the same issues as someone else. There's four of us at work stents of asd diagnosed kids and they're all totally different symptoms and issues.

I've skim read your reply as I'm at work now but I'll read it properly when home. It's hard, I don't mind admitting it, I struggle to know what to do sometimes. I feel I can't do right for doing wrong and vice versa.

Just out of curiosity, my son has a playstation he plays FIFA on it. For

Him its about buying nd selling the players so I have to fund this, my orher son thinks I spoil him, I dont think I do neither does my boy, he

Doesn't add it up I think he just sees what he needs to get order and complete his team doesn't matter what cost. Sometimes it's 30-50 during a week depends on funds. Sometimes just fiver. I guess it's part of his obsessive behaviour....

[LancsLad]

I think the essence of growing up is trying to make sense of the world we live in. At times Loubeeloulou as young individuals with AS a lot of the world really doesn't make that much sense and we struggle to find an acceptable place within it, I know I still do. In such circumstance we need to find meaning and it might be the case that in FIFA your son is actually trying to work in an alternative reality where he can function well. I would however question his level of functionality.

 

Computer games can offer a lot of security for certain types of people. I had a phase in my life at the end of my thirties where I had been forced into retirement from a position of responsibility due to a breakdown (my profile gives some background) and was in a transient place having come out of a secure unit. I turned to an online role playing game called World of Warcraft. In this game I was able to use many of my skills to positive effect. I was one of the most advanced players in the game well respected and jointly along with a couple of other individuals from the UK and Holland ran a very popular and successfull guild which was selective and had a few hundred members, to do this we were running a parrallel website to support the group. By playing the game for a while a lot of my confidence returned but I realised that there was more to life than being very good at computer games and so I retired myself before things got out of control. People who were at my level have gone on to play the game professionally but they are far and few between, far easier to become a premiership footballer in terms of numbers involved.

 

I do not know the game your son plays nor why it requires hard cash to support him, but my line as a parent would be that if the game is important he should be skillful enough for it to be self financing. To artificialy support a play level to me seems wholly unrealistic. I have met a couple of professional gamblers in my lifetime who do earn a reasonable living from their activities, this takes a lot of skill. I have however met a lot of broke gamblers and this is because they are simply not good enough at what they do no matter how much they think they might be. My gut instinct is he needs to take a reality check with his gameplay. An autistic trait is that often we want things to be perfect. That might not be reasonable but if we are to get close we have to work at things very hard. If he wants the perfectr team in his game the answer is to work hard in the game to create it from the 'free' resources available not to try and buy it, life in my experience simply does not work like that in the things which really matter and I feel you are giving him a pretty poor life message for a bit of peace of mind and a bit less hassle. In truth this might not be about the game but more about control behaviour towards yourself.

 

Just a few thoughts.

[Dijac]

Hi Loubeloulou,

 

LancsLad gave some advice on a topic I started the other day about my son being jealous of his brother. A bit like your situation, things had got out of hand, and I flipped - which in turn made Will flip in a big way. So you are not alone. I have days when I have no idea what I can do with him.

 

My son is also fairly obsessed with computer games - I do try to limit it, but as it is Easter holidays here still, he has been on it most of the day today. I feel pleased abuot the fact I did get him to go and post a letter for me today - and he does his de-stress ritual in the garden several times a day. There is a great teen club in our village where they do different sports each day during the holidays, but I know he would never go there, so I know I have to be content with a trip to the letter box.

 

He also likes building places and goes on a game called hABBOZ, where he has to desin and buld rooms - he sometimes asks for me to pay for points, but I do put a limit on it - it has to come out of his pocket money balance - he knows how much he has, and knows if he doesn't have any balance, he can't have any points. He tries still, but I try to stay firm. To try to engage him, I do also sometimes go on a game with him, and get him to explain it to me - even if most of it goes over my head.

 

My son also hates bathing etc - we have tried loads of toothpastes, and have finally found one he tolerates - it is usually the texture he has a problem with rather than the taste. Wierdly, he has no (or not much ) problem going to the dentist, and as he has braces right now, we do that quite often - so even if he ends up with yellow teeth, they will be perfectly straight!!

 

Not much help probably, and I am afraid I don't really know the system of help in England.

 

Diane

[justine1]

I have to say I agree with the way you handle things. You can't not tell him off for kicking the door (for example), if your eldest was doing that would you not tell him off? It is more about the fact that he should change his behaviour not you changing yours,and I think your eldest may have a point in what he is saying. I often go through the same with Sam,when he is told off and does'nt like it he often starts shouting, banging doors, and throwing things around. I know how it is,but if I don't tell him off then it does not send a clear message to him or his brothers. I would say if possible could you avoided restraining him,rather have him cool off in his room. Thats what I do with Sam,it means if he breaks things its bound to be his things in his room and he knows I won't replace it so he won't do it. Worst was last year when he threw a remote onto a new flat screen telly and the screen smashed. I did not replace it for 3 weeks,so everyone suffered and when I did I got a 19 inch which was a massive shock for them having had a 40inch for a good 5mths or so.

 

It does seem the meds are not working and another form of intervention is definatley needed,if you able to see camhs directly do so if not keep on at your GP to get an appt. I hope its resolved and that he will continue to work on his home education.

[loubeeloulou]

FIFA, in my opinion, is pretty much the only thing besies us his family, he engages with, he isn't disappearing into a different world, or creating an escape, they have to buy packs of players to create teams, he gets bored sells his teams, buys new ones, he doesn't have nice clothes, his choice, he doesn't have expensive trainers, or money that goes into his hand, which I know through experience with some kids often goes on cigs and booze whislt hanging round street corners winding up society - I know not all kids do this, I;m just using it as a comparison - so this team building, which we can go two weeks without spending one penny, isn't a major trauma, he knows when enough is enough. I usually walk away let him calm down and then we wait. And that works. This time I did wrong.

My eldest son made his point in an aggressive way, wound him up, screamed at him he was mental and needed help and then my boy just reacted to that, which after the day we'd had, wasn't unexpected. Yes, he has a point, he does need help, CAMHS have now offered to come and do some sessions with him at home, which we've never tried before, so from next wk that happens. I don't think he'll speak as such but we'll give it a try, he knows the psychologist so who knows.

To be honest, I wouldn't go as far as to say he has what he wants when he wants it and gets away with murder, cos he doesn't have anything, he doesn;t go anywhere, literally. He has been on tothe fields with his dad last night playing football. That is the first time he has left the house this week, as he doesn't do anything. So when faced with clinical depression alongside aspergers, absolutely no self esteem or confidence in himself at all, I don;t think I have anything to enforce, so when it does all ago wrong how can I possibly use rules and boudnaries in the usual standard way? I can't remove things from him, ban him from anything, for example if I stopped him having a tv or game, what would he do...? We don't have constant aggression luckily, the difference with the other day was I lost my temper with him, we fired each other,. If I had walked away from him left him it wouldn't have been anywhere enar as bad, I know that now, but hindsight is a marvellous thing!

I realise that anti depressants have a short life span now with asd, after three months or so we have low feelings and mood swings again, but we tried no anti depressants over christmas and it was absolute hell on earth and we were literally all on watch, hiding everything sharp etc, we still have the opportunity to icnrease what he's on currently a little. Social services refusing him any outreach, even though I doubt he'd ever leave the house with someone, he would let them come here even if he chose to do nothing other than shrug his shoulders. He would know someone cares.

I guess in essence, I'm simply, again, feeling quite alone to find answers and solutions and ways to deal with things. This has been the theme since the beginning, I guess many people are in the same boat. I'm going to try the camhs sessions at home, psychologist is going to speak with social services again and I'm going to apply for a befriender through NAS for him (now I know about it), all of which I think if they;d been started during feb-april instead of being refused,whilst he was feeling extremely outwardly positive, he may, just may have made some inroads to developing his confidence and might even have started going outside. There agin, if school had done things properly, education welfare had butted out, and every other professional we have met had acted efficiently then maybe we wouldn';t have such bad depression and thibgs wouldn't have escalated.....but I can't dwell on that, I know, things are as they are and I'm very grateful for people's input and suggestions.

[loubeeloulou]

QUOTE: LancsLad

 

When it comes to hygeine including brushing teeth. The sensations and smells associated with such activities are really discomforting for me, so I am not in line with 'social norms'. I will shower after exercise and will cleam my teeth from time to time but understand there are many cultures around the world who do not follow our cultural norms in many areas without any real issues. I think for some Aspie's this will always be a compromise area in their lives. When I rarelly go out I will make an effort to fit into cultural norms when in my own home my agenda is one of health and looking after my body, brushing my hair for example does not make me healthier, cleaning under my armpits might stave off a bacterial infection I think there is a big difference.

 

Maybe I should stop worrying so much about this hygiene thing, he has told me mithering him makes him worse, maybe I'm too hung up on it....I do tend to over worry. (Most of my family have ASD traits, my Dad, me, my eldest son, my daughter)

 

 

 

 

If that is the position you want to take and I can not make you, then here are my thoughts based on my limited understanding of your situation. Going backwards, or going no where? This wholly depends on what your target end point is to be honest. I think you need to sit back and say what do you think your expectations are for your son at say 16, 20, 25 and 40 years of age? You then need to sit down and say what is the reality of his condition and how it affects him on a daily basis? To be honest you may not have a clue about this untill you sit down over an extended period of time and talk things through in a calm, rational and non judgemental way. At this point you will be able to compare your expectations in respect to your sons potential to function on a daily basis. If the expectations are wrong whoose fault is that, your sons, norms in society, parental beliefs, brothers ability? Thats not for me to say, but if there is an imbalance in one direction then there is only one possible outcome and that is a feeling of going backwards or nowhere.

 

Initially, my expectations were huge. I was hugely tied up in his lack of potential in missing school, he is so bright, so intelligent, so I spent way too long stressing about that. Now he has not school, I stress about that, I do over stress, I do over worry, so I know I possibly make him more stressed. I have worked on that over the time we;ve known about his asd, two years now, and I am much calmer and usually don;t stress at all, which is why yesterday was so bad, he knows nothing rattles me with him. I try to encourage him in everything, what he can do, when he says there's no hope, I try to raly him out of it, I offer him anything he wants to do, or attempt, small steps etc, sometimes this bouys him, sometimes it doesn't, I believe his talk of harming himself is non-specific, I never dismiss it, although I feel it;s him saying Mummmmm, please help me I feel like I'm sinking. or such like. It's a cry for help, I know that, but I never discuss that with him, and to be honest, I have to believe it's only a cry for help (when I say only, I don;t mean to belittle the statement) as his Mum, I can't even contmeplate that my boy wouldn't want to be here. I do worry about the future, about the lack of possibilities for him, he knows he can access education at any point in his life, we've already had that conversation, he doesn;t see the point in many things, where as I see the potential for him, I do worry too. In an ideal world, he needs to realise his own potential, but through accepting small steps forward, until he does that, which I guess he might never do... then I don;'t think his self esteem or confidence will increase...but, I'm a Mum, I don;t have any clue really...

 

 

 

 

. I think your son has the potential for this the light at the end of the tunnel being he is prepared to text you about feelings of suicide, which if genuine and I have no reasons to doubt them show a very open attitude and a lot of respect to you as the keystone in his life with whom he believes there might be an answer. In this respect I disagree with posts which said this must be really awfull as a foster career of some very challenging young adults I would have seen this as a massive step in the right direction and one to grab with open arms.

I am happy that he tells me, it kills me when he does though, and I hope that our argument hasn't spoiled that. Thank you so much for your input and help.