Davros's Drains Up!

[Davros]

OK folks. Instead of making comments on other threads or hijacking/diverting threads I'm going to try to describe the problems we're having and see if anyone can help. I'll try to keep it as short as poss.
DS is nearly 10, he is classicly/typically (?) autistic and is non-verbal. He's long had the underlying tendency to "challenging behaviour" and self-injurious behaviour. It was mostly intermittent or easy to understand the triggers. A couple of years ago his behaviour escalated, imo the most noticeable thing was a huge increase in anxiety which apparantely is not uncommon at that sort of age. 3 months later than that DD was born so I don't think her arrival has anything to do with the problems and things were just as up and down as ever. 3 months after DD arrived we decided to use medication (Risperidone) as we were hostages in our home, afraid to go out anywhere with him. Bearing in mind that we've had years of, what I think, is the best behavioural/teaching program and school going it wasn't as if we hadn't tried other avenues, including working on communication. The medicataion worked like a dream (2 years since we started now) but, of course, there is no free lunch. He put on weight, had nose bleeds from time to time, lost some bladder control (wet beds) and has to have blood tests to monitor liver function which are a nightmare to do! There has been a question about Tourettes for a while but we weren't sure that this made any material difference. The great thing is that, despite these problems, we've always managed to have a good relationship with him and love him dearly as, apart from being our little boy, he was always very interactive, spontaneous and affectionate. In the last couple of months this has all fallen apart, basically since Easter as I can pinpoint it from asking for help.
He seemed to lose a lot of his ability or interest in interacting, he spends most of his time "stimming", he's always been stimmy but this is unbelieveable, bunny hopping, making funny noises, touching surfaces, twiddling his hands and objects etc. We found ourselves fairly suddenly feelng like carers and not parents, I certainly felt that before sometimes but not constantly. In the last 2-3 weeks he has started hitting anything and everything, constantly - himself, other people, objects (thumping the bonnet of cars etc). This means that I can never relax with him, I have to breath down his neck in case he breaks something or hurts someone whereas I used to be able to step back and supervise him from a distance. I am fed up with telling him what to do, what not to do or ignoring him/his behaviour all the time. Worse still, I feel that I am not treating him with respect any more. When he hits himself I hit him back, god this is so awful to say. Mind you, I am the only person he doesn't hit (and DD so far) and I wonder if its because I hit him back. Every time I swear I will not do it again but when someone is hitting themselves or thinks its OK to hit someone else then you do rather feel that they like it and that they are "giving you permission" to do it too. I have got various "pots on the boil", seeing Paed in a couple of weeks and have already told him most of this and will be honest with him about the last part , have asked Soc Svs for more help but haven't told them that bit, have asked school for help and have a home visit planned, seeing favourite GP soon and really will tell him ALL about it. I just hate everything about this at the moment and feel desperate a lot of the time.
However, in general my life is very happy and I am not struggling to cover up how shit I feel, mostly I feel fine. I think the fact that I take steroids makes me fall apart when things go wrong although I am fine the rest of the time and its not an act at all. I do think this is a factor but I've also developed some bad habits which I am managing to break but NOTHING SEEMS TO WORK.
I'm not sure I should even post this, I don't usually tell MN so much about my day-to-day life, I just like to make cracks and comments elsewhere.....

How are things Davros? Been thinking of you

Thanks JakB. Its certainly a bit better for me as he's gone back to school He is still hitting and actually thumped DD on the back the other day, she was just sitting near to him, he hardly seemed to notice he'd done it except when I told him off. I have tried ignoring and it simply doesn't work, he keeps doing it, so I am telling him off, he does notice that. I did thump him once last night as he was in his bedroom and started whacking the walls, its an old house and the walls are soft, we've already got "head shaped" holes in some places from long ago! I took peanut butter out of his diet from Tuesday, don't know if its made any difference but I'll keep it out for a while. I also hate how he gorges on it anyway. The various pots I've got on the boil will be coming up soon too which helps, knowing that we may get some more answers with the medication and the home visit from school next week for strategies.

I think the strategy for 'ignoring' goes out the window if they are either a danger to themselves or to someone else, like his sister. Its such a relief when they go back to school

I know that all boys at puberty go through a phase where their body literally outgrows their brains ability to keep up and they have problems with spatial awareness. My nt 12 year old is very much all flailing limbs and clumsiness at the moment. Combine that with your ds behaviours and learning difficulties and it is no wonder he is having control problems. I am so sorry that I don't have any useful advice on dealing with it. The only severe teen I know tends to be put in his garden to cool off but this won't help with a child with SIB.

I think the tassel is a good idea and anything to keep his hands occupied in a fairly harmless way is good. My ds is going through a bizarre hand mannerisms phase and as long as it doesn't hurt him or other people I don't mind. It seems to occupy him and keep his newly discovered aniexty at bay. I also look at the numerous NT adults who smoke, pick noses etc in public and generally engage in odd social behaviours which we seem to consider acceptable and just think each to their own
I will look out for any teen info and let you know what I find.

I've found ignoring it doesn't really stop it as well Davros. Unforunately telling him off actually reinforces it in ds1's case. If you find a strategy that works please let me know.

Thanks Maddiemo, rofl at the NT adults and the nose picking, do you know my DH?
Jimjams, if I find the solution I will bottle it and come round your way with a cart, floggin it in brown bottles

I think davrois has gone for lunch

I was indeed at lunch, the Gourmet Burger Kitchen has just opened at the top of the road, yum yum. DH came home between meetings. Oh, forgot, my life is sh*t boo hoo
Off in a minute to get DS from school and go trampolining, hope he behaves! He's been pretty good despite a thump last night.

ds made me laugh on wednesday night when we picked dd up from after school club cos he said , where are we going mum burger king or mcdonalds and I just said,, I think he gets it from nursery

Hi SOcci, thanks for asking. This weekend started very badly with DS waking up at 1.30am and howling/screaming, woke DD up but she settled down again quickly but I sat in his room for over an hour until he calmed down. The rest of the w/e has been pretty good. We gave him the second dose of medication 2 hours earlier today as an experiment and he was much better this afternoon so that seems to be probably the right way to go, I just need to confirm with Paed that we restructure the current dose or add more on..... I had avoided doing this before as I didn't want to have to get school to give him his medication. Not that I don't trust them, gawd knows its in their interests, I just didn't want him to have more "baggage" in their eyes. Screaming and hitting is baggage enough though so if it prevents that, then I'm sure they an give the 2nd dose.

Davros. I dont know how but I missed this thread.
Reading your first post realy struck a chord with me. J is about the same age as your ds and DH and I are getting very concerned about his violent outbursts.
I understand his frustration hitting out and do tend to make allowances for these moment BUT J for the past three months or so is lashing out at the most peculiar times and is almost getting some sort of satisfaction from doing so. These outbursts I will not tollerate and tell him off very sternly.
He has also started biting and over the past week has begun to break a lot more things around the home (Im not sure if thats not related to me disappearing for a week and deserting him!)He has also begun to pee around the house since we returned home...hubby feels he is almost making his mark on the house after spending some time away from here????

Ive got a friend who has a teen age son with ASD.I pick her brains as much as I can because she has so much advice to offer having been there and ridden the storm. Sadly she has told me that her sons behaviour became very irrational when he began going through puberty. When I began explaining to her what J was doing she was finishing my sentences and saying that the behaviour J is exhibiting is almost the same as her sons was when he was approaching 10 and it got a lot worse before it got any better.

I must admit that over the past few weeks hubby and I have noticed that we are turning down the invites to attend gatherings for fear of what J might do when he is out with us. The hitting is not acceptable but quite how I make J aware of that fact I am not sure. I can talk to him till I am blue in the face, but it doesnt make a jot of difference.

Davzmum who posts here sometimes has an older son with ASD, maybe she might have some constructive advice to offer as I know she has had her fair share of behaviour difficulties over the years. Things appear to have settled some what for her lad now and he has just been offered a college placement. If I see her about I'll point her in this direction.

Just wish I had something more constructive to offer.

Davros, hope you get some answers soon. Hope you are feeling a bit more positive and managing to get some time to yourself. Thinking of you

Thanks JakB and Jayzmummy, certainly didn't expect you to pop to the internet cafe on hol to check my posts! The hitting, to me, is the most frustrating and terrifying thing because, as I said before, it means he can't go anywhere easily...... I'm sure its related to puberty looming and seems to have an emotional element although not always and often seems just random...... I'll let you know if I get any solutions! I have signed up for a yoga workshop with him (for children with SN and siblngs) and will look into going back to aromatherapy massage at the place we used to go and get an oil burner as suggested by rnb and I'll slowly explore some other ideas here. Home visit from school on Friday and Paed next week.....

Davros.....Im home now! Need to sort out some LEA stuff in the morning and wondered if tomorrow afternoon you are free for a chat?

I'll be back from playgroup with DD by 1.30pm (then out between 3.00-4.00 to collect DS)

Have been meaning to do an update on this but it needs some thought and time, so I've put it off!
Things are definitely better. We've had various visits/appts:

Home visit from school - it was good to talk everything through from a behavioural pov, we have come up with new strategy for the deterioration in his behaviour in the toilet which has been a big problem. I think it is good for school people to know as much as poss about a child's home environment, esp as ours would like parents to do as much as poss at home within reason and they can gauge what that is now. We have got a new ABA supervisor over DS's classroom and she is great, so much better than the last one and I love his teacher. No doubt it will all change next term! But there aren't any that I would strongly object to, they're all good, I just really like the teacher he's got now

Went to see Paed - he thinks DS's change in behaviour or the pattern of it increasing and being "ticcy" is more OCD than Tourettes, partly because that is more likely. Looking at both conditions I find it hard to differentiate. We discussed increasing Risperidone or changing the pattern of giving it but Paed wants us to add a different medication that is specifically for OCD (lustral?). Amazing that something can be produced for such a specific condition but that's what it says on the packet! So we are trying that and we see Paed again in 2 mos, I can also email him or phone any time if there are problems. I think its affecting DS's sleep but he'd been going through a bad patch anyway. Melatonin doesn't work on him so Paed gave us some potion to use if we're desperate as would rather gauge affect of new med without it if poss. DS's hitting has definitely reduced and anxiety generally better, hardly any full blown screaming sessions although we had one yesterday and had to give him the sleep med at 10pm, he was just raging . As a result I have been enjoying being with him much more but I have whacked him a couple of times in the middle of the night when he just WON'T stay lying down, but much better in that dept. Told Paed that I hit him and that we find the situation so hard to tolerate sometimes, feeling like carers and not parents. He was very sympathetic and said he understood. Paed also talked to us about residential which we are not against so much emotionally but rather depending on what good it actually does for DS, not as an escape for US which I don't think it would be anyway, thinking about that one and will talk to him next appt. I have always thought that, without ABA and TreeHouse, DS would have been in residential long ago as he is so hard to manage and has such terrible meltdowns. Can't call them tantrums as I always think of those as related to something reasonable, these are just screaming, howling, sib with NO obvious trigger and nothing you do makes any difference....

Trainee Psychologist has been to visit twice and we've chosen a simple task using backward chaining to get DS to learn. THis is operating his CD player as he used to drive me nuts asking for the same music over and over and over but didn't seem able to learn how to do it himself. She is lovely, has been twice and coming again next week. I think we're one of her "projects"

Have appt with GP in a week or so. No rush imo but don't want to leave anything untried. Will talk to him about counselling. Also got info about an over the phone counselling service but, everytime I've thought about it, I find myself unable to be coherent in a phone call! I wonder how this works!

Soc Svs - still waiting to find out about a Link worker so we can think about having a night without him, even a night away somewhere! They have paid me a massive amount in DP payment but I think it is a mistake rather than an increase, will phone tomorrow to check. They did this once before when they increased the hours and backdated it to Soc Worker's visit, so could be MINE, ALL MINE.... let's see!

Relaxation - we went to a Yoga session for children with SN last week which was great. All 4 of us went and, although my 2 were the most unruly, we all enjoyed it. DS stayed in the room with us (rather than trying to escape to the playground which he knew was there) and joined in a bit wit prompting and had a good time. A friend brought her much more HF son who wouldn't join in and moaned the whole way through! Must also remember to phone up the place where we used to do aromatherapy massage and see if we can book. Forgot about RnB's oils suggestion, will also try to do that.

Mind you, this weekend DS has needed a lot of managing. Had a terrible afternoon/evening yesterday, as bad as ever, also he has gone back to some annoying old behaviours, emptied out the entire new bottle of washing-up liquid, stole the box of porage and strewed it around all over the house. OK, not life threatening things but annoying! and we thought we were past those things

So, things are moving on slowly. Seeing the Paed made me realise, although I thought I already did, that there are some things that I just can't change, no matter how hard I try or how creative I am or how much time/effort I put in.

DH and I are so together through all of this and we want to do the best for DS, we've always believd that if you do that, then it is the best for everyone.....

oh god davros - not sure what to say- partly because I think you're a bit further along the same road as us and I'm not sure that we'll be as together as you, or as able to manage it all.

The OCD/tourette's has got me thinking- a lot of ds1's tics are OCD type things as well. At whcih stage do you decided too try medication. When it becomes unbearable or before?

Glad you're sounding more positive and I've been there in the middle of the night as well (does ds need you to stay with him in the night, or can you leave him safely in his room. I've now taken to leaving ds1 be- even if he wets somewhere - I just sort it out once he's asleep- bloody hours later-- because if I try and interfere it all spirals o) If ds1 needs someone there we noww tend to put up the 2 travel barriers and sit the otherside- can see him but have that distance that allows us not to loose it (or we take it in turns- although I;ve foudn that can stil spiral).

Davros...Im sure any of J's tics are OCD's. He has control over them to start and then they take over him. Last for a short time too....about two - three weeks but are then replaced with something else but go in a cycle. We get lip smacking, excessive blinking, tutting, barking and this weird high pitched sound thats a bit like a dolphin sound. J moves from one to the other and Im sure they are more OCd than tics.

Lustral??? I was given that as an anti d when I had my hysterectomy after I lost my babies. Never heard of any one else ever been prescribed it for depression.

You certainly sound as if your getting on top of thingsand it sounds like you have soe good support from paed.....lucky you.xx

I'm glad things are improving a little. Will keep my fingers crossed that those DP payments really are all yours.

I am relatively new to mumsnet but in all the threads that I have read it is the comments that read under your name that grab my attention. You are clearly a very special lady. You give great advice which is sound but/and sensitive. Your ds is very lucky to have you as his mum!

I missed this thread before, but now I've read the whole thing and I'm just full of admiration for the hard work you are putting in - you must be exhausted. Sounds like a great idea to get a night away if you can, you really deserve it.