how to cope with ds' behaviour (pls)

[morocco]

sorry if special needs is not the right place for this but I was unsure about posting just under 'behaviour'
ds1 has kidney trouble and has to take very high levels of steroids. These send him completely off the wall, hitting, punching, crying, screaming, shouting. It can be really hard to deal with and I don't really know what I'm supposed to do about it all. I'd really really appreciate any tips from everyone about how to deal with this in the best way. It seems like time outs, naughty stair etc just end up in me screaming 'no, stop it' all day, then it all drives me mad and I sometimes end up smacking him. I don't really want to end up going down that road so I need tips asap on how to avoid it. He's almost 3, I know he can't help it (and believe me I end up repeating this a lot during the day sometimes) but I can't just let him go round whacking everyone (eg punches right to the face completely out of the blue, and really hard too). He could be on these or similar drugs for years so I can't just let it slide too much.
HELP
(btw, I won't be around much tomorrow, if anyone could bump this up for me I'd be so grateful, thanks)

[Jimjams]

Not the same- but I know how off the wall ds1 goes on certain foods (peanuts still send a shiver down my spine- his behaviour was similar- headbanging all day long- covered in bruises). Is there anyone you can talk to about trying to alter his medication? A different brand? Different dosage? Are they interacting with other drugs? or does the agression always come with steroids? Are they reviewed regularly? I think it will be hard to use behavioural techniques if the steroids are making him feel so awful and angry.

[Jimjams]

morocco- is the kidney trouble/drugs recent? Maybe it will calm down when he's adjusted to them?

[morocco]

hiya jimjams, thanks for the speedy reply

yes, I suspect too that behavioural techniques just aren't going to achieve much but that's all I've ever really read about - I don't know what to do really.

He's not like that all the time, it's whenever we change the dosage, either up or down, while he adjusts to it. And it's ususally worse in the mornings for a few hours after taking the meds and then last thing at night. Although the steroids are not that great for him, they're the least worse option right now so I want to stick with it as long as possible. Which means I've got to find some way of coping with his behaviour. He's on a daily dose for the next month then that will change to alternate days and fingers crossed we'll see an improvement in his behaviour.

I know that a lot of you out there have to deal with a lot worse stuff (that reaction to peanuts sounds really hard to deal with) - how do you manage to stay calm and stop him hurting you/other people/himself? Or is that mission impossible? Are there any good books on the subject that might give me some ideas, even if it's managing my behaviour not his

[morocco]

actually, having read all that, perhaps I've got it wrong and his behaviour can't be controlled, it's me that needs to learn how to respond to it better.
How do I achieve zen like calm in the face of extreme provocation (particularly when he's bashing his younger brother which drives me insane)

[Jimjams]

I think its hard if its drug related because the first thing you need to do for behavioural management is identify the trigger and then remove/change it.

Otherwise usual techniiques. Tell him what to do, not what not to do. So if hes bashng his brother say "name come here". Rather than "don;t bash your brother". Come here gets him away from the situation and stops his brother being hit, then you can do the disciplining etc.


I count to 10 a lot! I remove ds2 and ds3 a lot as well.

[Davros]

How is his communication Morocco? Maybe some timetables or visual cues/clues would help? If nothing else, these can help sort-of slow down a situation. I wouldn't say abandon any attempt at behavioural methods, even though its drug-induced, as children can still learn different behaviour but it is a lot harder than for a child who doesn't have the same problems. Can you speak to local Clinical Psychologist for advice?
I take steroids myself and they certainly make me feel different, what I find is that they emphasise whatever mood I'm already in so is there any way you can get him in a good mood? I know that is trite but it is what happens to me. I'm fine a lot of the time but fall totally to pieces when things go wrong.
I also agree with what you say about changing YOURSELF as that is something you can control. I've had to think that way much more recently as my DS, who is severely autistic, just can't help many of his behaviours or moods. I don't just let him get away with it but I try much harder to be calm, doesn't always work though. Its better for ME to be calm if I can.
Good luck, let us know how you are getting on.

[morocco]

thanks jimjams and davros - it's good to get some tips from you both
his communication is fabulous - rather stunning improvement since he started on the steroids, perhaps because he's so generally hyper? The more I think about it, the more I know it's me that I've got to sort out a bit first. eg the other day he bashed his brother so I told him off, he went into meltdown so we moved to time out. Then he bit his dad etc etc and, can you believe it, I ended up feeling so sorry for the poor little thing, so obviously out of control and full of anger, that I ended up cuddling him for ages. It felt the right thing to do, but I can't help but think that it is the path to more and more nasty behaviour if I can't sort myself out and be more balanced rather than all nasty then all nice.
I had this maybe very daft idea of buying him a punch bag or something similar I could get him to go and bash when I could tell he was getting into bashing mood - do you think it might work?
Otherwise being outside seems to help at least calming him down, it's inside that he's often at his worst.
davros, you mentioned a clinical psychologist, how does one go about finding such people? I should mention it to the specialist next week perhaps?
I don't know how you both do it - I am in awe of you!

[coppertop]

The punchbag sounds like a good idea. We bought ds1 a punchball and now ds2 uses it too. A mini-trampoline is also good for helping to re-direct some of the anger - for ds I mean. It's really helped to calm down my ds2 (2.5yrs) when he's ready to explode.

[morocco]

coppertop - for a second, I could quite imagine myself trampolining to safety when the meltdown begins - can't catch me . . .

are there any good books you could recommend I read? I'm always trying to read my way out of tricky situations.

[Jimjams]

We have an 8 foot trampoline I can quite often be heard screaming "traaammmppollliiiineee" And yes it does work. DS1 is much calmer these days- maybe its linked. Quite often he just lies on it looking at the clouds.

[Davros]

I agree that physical stuff definitely helps reduce tension/anxiety. So trampoline, punch bag, exercise balls etc. I am planning on getting DS an exercise bike!!
Mention Clinical Psych to specialist definitely.
Don't know about books, I'm not a big one for reading through issues these days, prefer Harry Potter and Nick Hornby! Jimjams is Book Woman.
How are you finding his eating now he's on steroids? If he's eating a lot it might be worth putting more thought into WHAT he is eating (or he'll end up like me, ha ha!).

[morocco]

today was a lovely calm day and he played at the park with a little boy his age who he didn't try to strangle or beat up so I am very pleased. He's also been weeing non stop so this could be a sign of a remission coming up which is great news. He had less steroids today too as they are starting, yet again, to try to reduce the dose. I can't wait.
You're quite right, davros, about the food - he's supposed to be on a low salt, preferably low sugar too, diet although I'm not too fabulous at doing it. Luckily, although his appetite is bigger, it's not huge so we haven't had the problem of weight gain yet. Except, his first words are what's for breakfast, and then he usually wants pasta or baked potato or something more dinner like.
It's interesting to be able to talk to someone who can explain what it feels like on steroids. They told me it was an intensifier but also a kind of panicky out of control feeling - does that ring true? Sounds horrible - do you have to stay on them long term too?
I'm keeping him outdoors as much as possible and we do the boogie beebies religiously in the mornings too. I dread winter already. An exercise bike sounds hilarious - he loves his bike - I wonder if I could sell him on the idea of an indoor bike too?
he's so much fitter than his lazy bum mother I'm afraid.