dissappointed in myself!!

[seeking-sanity]

Hi

 

I feel so cross and guilty with myself today, I lost my temper with J last night, im so tired and just dont feel i can cope, Js with me 24 7 I have no family around me, my husbands at work and js one of four, the other 3 are really good, as good as two teenagers and a 7 year old can be, I feel guilty i have no time for them im just washed out with J all the time, hes not at school at the moment and is very emotional and has decided it best not to goto sleep in case he dies!! so he keeps everybody awake our 7 year old looks like a zombie cos shes so tired, hes on sleepers, but just seems to fight them , last night it was about midnight and he was still screaming and prodding the other kids and I lost it, I know ishouldnt have, I shook him and told him I couldnt cope with him anymore, Hes still not talking to me and thinks I dont love him, Ive desperatly tried to explain I was tired and he was being naughty, but he wont have it!! I feel awful toady and dont feel worthy to have such a special boy, but very hard work.

[George]

Hi Seeking-sanity,

 

I know how you feel - I've lost it many times, but I just wanted to say I've been where you are and still go there

 

- guilt is so destructive, it puts you on a downward spiral and things just get worse, I know its difficult but try to draw a line underneath it and don't beat yourself up, just start again - easy to say I know but its the only way to go.

 

Georgina XXX

[oracle]

How old is J? I have done this one with my eldest and it was a really hard nut to crack. In the end we seen his psychiatrist who did help although he did not lie to David. He explained that we would all die but staying awake could probably make him ill so that was a good reason not to do it? Sort of shock tactics I think?

 

I put a mattress onto his floor and slept in the room eventually it was the only way any of us got any sleep, and slowly over a period of time he did improve. He still has very dark moods and fears dying but as he is now older we can usually manage to talk it through, although he still does sometimes wake me up.

 

It's teaching them that they have a fear and a phobia about something that is difficult. David now understands this and so never watches the news, if he can help it, or any medical programmes, as he always thinks he has whatever he is watching.

 

At one point David was going 72 hours between sleeps so I really do understand how hard this is for you - and you are only human. I would say and do some pretty horrible things so do not beat yourself up. Try to get him to talk about this. It will upset him, and you,it did with David but by talking it all through many many times he slowly began to take control.

 

Does he share a room? Would leaving a light on or even the TV help? It did for David, just hearing the TV in the background made him feel that he was not alone. It may be frowned upon but desperate times mean desperate measures.

 

<'> Carole

[seeking-sanity]

Thanks Georgina for your reply it really does help talking on here.

 

Carole - Js 10 nearly 11. He does share a room with his 15 year old brother. Jamie sound so much like your son in a lot of ways his phsy has tried talking to J about this and his fear of us dying, but at the moment I just cant see an end to it nothing seems to get through, he still wont leave the house without me, its been nearly a year now since Ive had a break from him and I know he has desperate problems, but its draining me and my husband, do you know if there any help I could ask for, like someone J could build trust in to eventually give us a break even for an hour or two.

I love J so much, but I really think I need help for the sake of my family.

Sorry for going on having a really bad day today.

[oracle]

There should be someone to help you in theory in practise I do not know. I do know that it is hard work. It sounds like maybe your son is very depressed, David was to. His depression started aged 11 and it was blooming hard work. There were times I felt that I had lost it and my life altogether.

 

Who have you asked to help you? You could see what is anything is on offer. David actually had counselling and although it was not ASD person she was very good and helped David a great deal. He still often says that he would like to talk to her again. You could try the Princess Royal Carers Centres they may have information about what is on offer.

 

David's 'bond' with me was so intense that one psychiatrist diagnosed David with an Oedipus Complex. Quite shocking and it was not but David was so afraid of everything and everyone that I was the total focus of his world. He simply could not cope without me.

 

He can now! Hang on to that please. I am still important in his life but he did slowly decrease his total dependency on me. With David I believe he needed to find himself and come to terms with himself. It was a huge job building his self esteme and helping him to understand that he could do things without me.

 

What is the school situation like at the moment? Sorry I know I should know these things but I would like you to refresh my memory.

 

Carole

[seeking-sanity]

Thanks for replying Carole,

 

Jamie is having counselling, but it has only just begun, she thinks the more he knows about aspergers the good and bad might help him with his feelings?

Jamie has done very little of year 5 and not been there at all since feb, he has had a couple of sessions of home tuition a week, the lea have just agreed 25 hours a week 1 on 1and a laptop, this is not at his old school as the was no way we would of got him back their, but the little school hes going to go to he seems to like, but until sept we just dont know whether he will go or not!

The phscy did say J was depressed, but wanted to try counselling before medication, which I agree with, although hes on Melitonin for sleeping which did seem to help to start with,but not any more!

Thanks for all your help Carole its really nice to talk to someone whos been through the same sort of thing.

[oracle]

Hmm Idea - has Jamie ever met an adult with AS? I ask because I know that until David did he had no idea what an adult with AS would be like. He needed to know this even though I do not think that he knew that himself.

 

I was fortunate because I have quite a few adult friends with AS made through my campaigning work and I invited one of them to stay with us for a few days. It was a gamble but it paid off. David really got on well with him and liked him. He made a few telling comments after the visit like 'Your friend is really clever isn't he?' and 'Your friend is quite cool' I think that maybe he could not visualise himself when he was older. My friend helped him to sqaure that circle. I did not make big deal of the visit and to this day David does not know why it was arranged.

 

I am all for telling kids about themselves but I tended to hold back on the negatives with David because I knew he had enough negative thoughts and vibes of his own. We did do a great deal about feeling but be prepared for the torrent that that may bring. David was like a bottle of pop waiting to explode. But being able to identify his feelings and then put them into words did help.

 

Does Jamie have any interests? Something that he really likes that you could use to motavate him? I went through every which thing I could think of to see some interest in David and then I used it to bargin with him. Does Jamie leave the house with you and where will he go? Sorry to ask so many questions just trying to think of things that we did that may help you?

 

I hope school goes well in September only time will tell. This is a bad age for our kids but they can and do come out the otherside - an so do we sometimes even if we do look a little battered

 

Carole

Edited July 15, 2005 by carole

[seeking-sanity]

Hi Carole

 

Thats a really good idea Jamie has never met a adult or child for that matter with as.

The only things Jamie is interested in is cricket and football and we have tried and tried to motivate what used to be a boy that didnt know when to stop playing sport, occasionally he will go out the front with his dad for a bit of cricket, but hes happier watching it on tv, but he will once a week play for a team if we are with him, but it is very sad to watch as hes very good at it, but he dosnt like people crowding him so he keeps his distance from all his team mates.

He will not walk anywhere with me or my husband for fear of being beaten up and we have major rages if I have to drive to the shops or to post office, Ive been using social stories, when I do manage to get him out of the house he constantly thinks people are looking at him, even at cricket, he also thinks people think he is stupid , which of course he is not, hes a very bright boy, but recently the OT told him his proccessing was of a 4 year old(which was really helpful!!) Ive backed of doing his hand exercises because he became so frustrated, I feel right at this moment he has enough in his life to cope with. Also when ever he does come out with me I have to constantly re assure him that everything is okay and he has to be so close to me.

How long did it take for David to come through the worse?

How would I look into meeting other people with AS??

[oracle]

How long did it take for David to come through the worse?

 

Honest answer? He was 14 before we turned the corner but he was 12 before we he hit the wall.

 

He does sound very like David. What about cricket or footie games on a games machine will he play them? Will his Dad play with him and let him win most but not all of the time?

 

David hardly left the house for two years so I know how difficult it can be. He liked magazines so I would bargin, come with me to the corner shop and then we will buy a magazine, then we come home. If he said no we he did not get the mag. That was how we finally turned the corner but there always had to be something in it for David. I then expanded the outings and slowly we went further and did more.

 

I think the big issue here is that your son if fighting himself, and maybe even afraid of himself at the moment ,and he needs so much support and while you try and gently as possible to expand his boudries. My advice would be not to push him too hard, but I am no expert. I went with my gut instinct where David was concerned and somehow we came through.

 

 

How would I look into meeting other people with AS??

 

Where do you live? Are there any local groups. We have people with AS in our parent support group and our plan is to actively involve them in our outings with us and our children.

 

At the moment David (yes really) is allowing my friends 9 year son to come to our home and sit and observe him. This lad had just found out about his own AS. He does not want to speak to David much at the moment and that's cool with David. But he does spend most of the time in our house just watching David. David thinks it's a bit odd but he is going along with it.

 

If you prefer pm me and I will see if I know anyone where you live or in your area?

 

Carole