Don't know how to get help or what help to get

[Alli]

I don't know what to do. My son was diagnosed very late and has never really had appropiate resources. He is extemely bright and when his IQ scores were so high in the past, he tended to be deprioritised. He has huge problems with organisation and is very immature aggressive and paranoid. He attends a clinic. When we first brought him there we had an assessment which we had to get done privately. He was diagnosed as having AS ADD ODD and needed Help with Social skills, speech and lang training in emotions and O.T. He has difficulty writing, uses a laptop in school almost never manages to do classwork or homework.

The clinic that we take him to initially said that he had been assessed so much that they did not feel that he needed any more assessment but did everything to avoid appointments with my son or us. (At one stage he saw nobody for 3 mths and he began to self harm) Following this he had a weekly apt with a psychologist who seems to have built up a relationship with him. She says he can't handle being challenged on anything however small and she is very worried about his paranoia. She is going on leave for 6 months and the clinic are not replacing her. I have had no contact from them to say what will happen appart from the psychologist who voiced her shock at the situation verbally. Recently when I put pressure on them re other help he was assessed by OT and Sp and Lang who told me separately before the assess that they would not be taking him.

This morning he missed his lift. His Dad waited as long as poss My son spends so long in shower getting dressed etc. He believes that his Dad waited until he was ready and drove off. This is not true he arrives frequently downstairs with wet hair (down to his waist) only partially dressed. Have tried everything to no avail. He left the house with 3 bags swearing etc. I threw on my clothes and gave him a lift. He started to give off about his Dad and I told him that he needed to hurry up in the mornings and only he could do that. He accused me of shouting (I didn't) and told me to shut up and he threatened me physically.(Just as I was turning onto Motorway) and accused me of physically abusing him as a child (Not true) I am so upset and I dont know what to do with him. We received no family support despite having asked. At this stage I would bring him to any country to get help and I dont even know what to ask for.

I know this is a UK based forum so advice on my son's entitlements etc would not apply but I really dont know what to do. I feel my son is just waiting to beat me up he has said this. He has focussed all his frustrations on me. He doesn't have probs, he feels we are the prob. I'm literally at the end of my tether

[oxgirl]

Oh Allie, you sound so desperate, I'm so sorry you're going through this difficult time. I don't have anything useful to suggest at all, but hold tight, someone around here will have lots of useful advice and I'm sure someone will be able to be much more helpful than me.

 

Sending you this <'> <'> to tide you over in the meantime!

 

~ Mel ~

[Alli]

Thanks Mel

He came home as if nothing had happened whereas the whole household is upset.

Would appreciate some replies if anyone could direct me to any information about how to deal with a teenager who believes the worst of everyone. We cant ever discuss probs with an impartial professional because he sees this as everyone ganging up on him. we cant even talk to him together because he cant cope for the same reason. Spoke to a friend and she said maybe the psychiatrist should be seeing him for paranoia and poss giving meds. Psychiatrist said the last time that he thought education was appropiate and not meds.

I know any improvement will only take place over a very long time but I can't see how it can happen. My other children are very stressed as a result of his behaviour They are often at the receiving end of his violence and constantly exposed to his swearing and tantrums. This might sound awful but I would prevent him having contact with my other children if he wasn't my child. Still after all the upsets he could turn around and be charming and interesting as if nothing happened. I think he just uses adults to intellectually engage with and he doesnt really care about anyone. He could chat away happily until he might be asked say, if he has homework. Then he'll blow his top and say something like "I'd have it done except you are delaying me .and now that you have upset me I wont be able to do it. He might simply be asked to go to bed because its late and he will have an absolute fit. The the cycle starts all over. he cant get up because he is over tired He texts nonstop even getting texts through the night He wont leave his phone downstairs on charge He wakes up exhausted he cant function without a shower of at least a half an hour He brushes his hair in the shower he has all these sensory things going on. When he occasionally is ready on time If he gets down a few mins early he starts fights. He wont entertain any suggestion to improve anything.

 

I dont believe he has unique probs someone must be able to tell me what he needs

Alli

[butterfingersbimbo]

oh chic it sounds like you are having a very hard time, i am really shocked at the lack of proffessional support you are recieving. he sounds like he has similarities to my el, she is so sensitive you cant even look at her some days and she goes off on one. we tried to do anger management through the behaviour team but they had to admit defeat, it was causing el so much stress she couldnt even bear to think about her behaviour and it made things worse. el is paranoid too.....its very difficult isnt it.

is your son on any meds for his ADD? and how old is he? his outbursts are probably a combination of his autism and his ADD, and on top of that his ODD really is going to make anything you try to do to help him even harder.....

am not sure what to suggest to be honest, but am sending you a big hug <'>

[Alli]

Thanks

He is only on meds following recent diagnosis of epilepsy not for anything else. Was on Mincin for acne refuses to take them since someone told him they mess up kidneys. He has had acne for years blames us (neglect !) First tablet he was put on for epilepsy causes acne. How could they give it when he was sitting in front of them with acne. Hes on diff one now. Still having 3-4 Seizures a day they are like dizzy spells. Has to wait until Dec for acne appointment Alli

Edited November 9, 2006 by Alli

[board]

hello so sorry you are haveing a bad time at the morement hope things get better soon my dd is only 6 7next week and a hand full but we are getting help for her they same to help more when they are younger i think mite be wronge hope you find the help you need soon all the best jill

[barefoot wend]

I have tried so many times to answer your post and deleted as each time I'm very worried that I may sound patronising or 'preachy'. However, I feel I'm doing you a dis-service in not even attemtpting a reply when you're so obviously asking for help.

 

So, I will try to reply and apologise now if I in any way cause offence because it is so not intended and I only want to let you know how we lived through a similar experience- whilst in no way suggesting that this is an 'answer' as our son will obviously be very different to yours.

 

Here goes.

 

My son is 15 now but about two years ago was at mainstream school without a statement. He had been doing very well and the school wanted him reduced to School Action as he was doing so well - they were talking Oxbridge.

 

Then, all hell broke loose. Things went downhill so rapidly it was terrible. He refused to go to school, tried to kill himself, threatened his siblings, etc. TBH I couldn't possibly go back there.

 

He'd had a dx for AS for a long time and had been seeing a psychotherapist on and off for about two years but she said her work was done(?). After about 6 months of watching him deteriorate further we sought the help of a private psychiatrist who prescribed Resperidone and, later, Prozac. We were pretty keen to try anything by this stage so put aside our horror of meds and got on with it.

 

The Risperidone works very quickly and did reduce his anger and frustration - it gave us all breathing space.

 

After much soul-searching we knew that the escalation of his problems were caused by the stress he was under. Mostly school but also the weight of expectations placed upon him to 'fit in'. And, yes, we were partly to blame.

 

We took the decision to remove him from school - by this stage he was getting absolutely nothing from it. He now does some formal education at home via correspondence but also has time to pursue his own interests - of which he has many. It helps that he far less in the way of time pressures now and accepts change far more easily now that he feels more in control of his life. I read somewhere that an NT person can live with a good deal of change and alteration in their day so long as 10% is predictable - an asd person needs 90% predictability to cope with 10% change. Our son was so overwhelmed by stress and having to cope that he virtually shut down completely. Now that his day has a good level of predictability, and he has control over that time, he embraces the change. He can socialise, go to London, go shopping, meet friends etc

 

He is a totally changed individual. We have stopped all meds and he is a joy to spend time with. When I compare where he is today with how he was two years ago I know we were right.

 

I'm not for a moment suggesting you take your son out of school as this was our own personal solution to our own unique problem but I do think that your son feels stressed and anxious and this is causing you all alot of heart ache. School was the root problem for our son, whereas your son sounds like he has pressures of school and just generally being a teenager and working his way around the whole 'Who am I' and trying to fit in with his peer group thing, I feel that if you can get to the root of the causes and help him alleviate them it may help.

 

I'm also totally unimpressed with the fact that you seem to be getting so little help from the professionals when your son so obviously needs it - teenage years are a difficult time for everyone - they can't expect him to work his way through it alone.

 

Sorry this has been far too long-winded.

 

Barefoot

Edited November 10, 2006 by barefoot wend

[curra]

Hi Alli,

 

My son is 13 but there are a lot of similarities between your son and him. M's paranoia and verbal abuse against me can be terrible and when he's having a fit of anger there's nothing I can say to make him come to his senses, so I prefer to simply say "let's talk about this later" and then go to another room or go out for a few minutes. It is very hard for a parent, I can really sympathise with you. Now, to some suggestions. I can only say what has helped in my son's case, which in spite of the similarities could be very different from your situation, but I hope it helps you a bit to read this. M is taking medications, Risperdal and Prozac. I'm not saying that these meds are the solution - only a doctor can tell if they are right for your son and prescribe them. Risperdal can sometimes cause side effects. My son takes a very low dose of both meds and this has helped a lot. The other thing that is helping is counselling. It was not easy to find the appropriate counselling , the first counsellors who saw him made things worse by attempting just to modify his behaviour by constantly telling him what he had to do and what not. M got worse and worse because he felt that everything he did was inadequate and that nobody understood him. He is now having counselling that is person-oriented, non jugdemental but supportive. He has been going for 2 months and so far it's been very good. Can't say that he's not aggressive or paranoid anymore, but in many ways he's changed in a very positive way so that now I can sit with him and we can discuss how he thinks about school, family, friends, girls etc in a calm way, when he wishes to talk about these things like all teenagers need. As to school, yes it is the big issue that causes him stress. Not only because he feels that his teachers don't understand him, but also because he has many problems with his peers as he wants to have friends but can't make friends. This is in itself a situation that can make anybody feel paranoid, let alone a teenager with a disability. They vent all their frustrations on us parents (and mums in particular since we are supposed to sort everything, aren't we? ) because they cannot deal with the stress by themselves, even if they look and act old enough.

I'd start by seeing another consultant who has experience with ASD to ask whether your son could benefit from medication, and then consider the right counselling for him. Hope you get the right help for your son!

 

Good luck!

 

Curra <'>

[Alli]

Thanks for all your replies. I really appreciate it. Will post again soon when I've a clearer head. Trying to get letter together for clinic, he had his last apt this week!!

Thanks again

Alli

[Just Jo]

Just joined this site, and its so helpful to read what you have said...... now i feel im not alone.My 12 year old son too is very agressive and also has tried to kill himself.

 

He gets extremely angry when i ask him to do the smallest of things. I try to stay calm,but not amount of taking to him seems to help..... I just seem to make it worse, i do try to walk away but that make him worse. I dont know what to do anymore.

 

Im considering pulling him out of school, getting a statement for him is still continuing after 18 months..... I feel the school have made him worse. He has gone from a child who used to "Shut donw" to a child that now screams, swears, breaks things, hits wall, kicks windows and harms himself by punching himself in the head to bad... However, teachers have called him stupid,silly, moody and stroppy. and the Head Mistress has said if his behaviour doesnt change he is out of that school.

 

It breaks my heart to read that others are going through this.....

 

My 10 years old daughter is terrified of him, although im not scared of him,i do feel that as he gets older and stronger i will be. I just wish there was someone i could ring when things happen so i know that i am helping him and not making things worse...

 

Rant over......

[Alli]

Thanks for yr replies he is currently getting no help in school as the only help being offered was the kind that stresses him. NO FLEXIBILITY !!!!!!!!! They thought if the forced him to do everything he was supposed to do he would see how much it improved things that he would willingly continue. Some of the pressure was in a very bullying way and he just resisted it. i feel really desparate at the mo. My other children are exposed to stuff, they shouldnt be. He is really paranoid, thinks we are inventing ways to torment him. Prob should be on meds which he might not take. He is taking meds for epilepsy he cant remember to take them and goes ballistic when reminded.

 

Who could I take him to anywhere to get a proper longterm plan/strategy that would be independent?

Alli

[Just Jo]

I always give my son plenty of time to get ready, i always say we are leaving earlier than we are, my son like yours spends ages in the shower, doing his hair, getting dressed. This usually means we are late, what i try to do is to stay calm and just give him the time he needs. If i try to hurry him up he wont do anything, he will get abusive and hurt himself or smash things up. My daughter does not come out of her room until he has left for school.

 

I have moved all the clocks in the house 10mins forward..... ha ha naugthy i know.

 

I find it very frustrating when he takes so long to do things.... I try to ignore the bad behaviour and really go over the top when he is being good..... although he looks at me strange, i know he loves being praised.

 

From experience giving him the time always helps. He does say some terrible things to me, but i try not to take it personally. Its part of the condition, they cant help it.

 

If my son swears or shouts i deduct 20p from his pocket money, if he says sorry within 10 seconds he gets it back..... It does work,but takes some time.

 

Im here if you need me....Jo

 

 

PUSH TO GET HELP IN SCHOOL...........

Edited November 13, 2006 by Just Jo

[LittleRae]

Hi Alli

 

Sorry to hear what you're going through. We've had some small measure of success with getting out in the mornings - my son is almost 11. I'm sure a lot of it won't work with a 15 year old, but may give you some ideas.

 

What I did was to get everyone up half an hour earlier in the mornings. We now get up at 7, to leave the house shortly after 8.30. Then I made a list of the things he needed to do each morning. I call him at 7 & make sure he gets up, then after that just remind him of the list. The quicker he does everything, the more time there is to play the computer before school. It's just been going a week now, but touch wood, it's made a huge improvement - and he still gets in his half hour shower. The thing is, I'm wandering the house, wondering what I should be doing!

 

With school, he should surely be entitled to an SNA? I know it's a little different with Primary, but I just handed in the diagnosis and he immediately got 5 hours resource a week. When a few problems arose at school, the school applied for the SNA. If you go onto the Dept of Ed website, you should find details of your Area SENO (Sp Ed Needs Officer). The other thing, would you post this on Aspire? Lots going on there right now and I'm sure someone with a teen could point you in the right direction.

 

Have you contacted CAMHS? I would keep at them - let them know that the other kids are affected. Have you tried OT privately? Not cheap, we drive from Navan to Swords each week (for 18 mths now) but we have made huge strides with Sensory Problems.

 

Hope you get some help soon

 

A

[butterfingersbimbo]

well if he hates any mention of meds then there's probably no way you could talk him into trying them for his ADD......the school situation sounds horrendous, no wonder he is so stressed it sounds like all they do is make him feel like an alien.

 

am not sure what to suggest as he doesnt have that long left in school does he so would it be worth changing school? would he even be able to cope with it?

 

am sending you big hugs, wish i could come up with something more...... <'>