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.....

[Saker]

Davros

I can't offer any practical advice but wanted to say I'm sorry you're having such a cr*p time at the minute. .

I hope you find a way for things to improve a bit soon.

[Blossomhill]

Davros I wish I had something useful and helpful to suggest but as you say yourself you have the best intervention for the behaviour with ds's school and everything. I feel awful as you always help me and advise me.
The one thing I will say is please, please, please do not beat yourself up. You are a fantastic mum and I know how much you love your ds. Right now you are dealing with extremely difficult circumstances, please don't forget that. Please when you do see soc. serv. tell them everything. They are there to help you and your family. I think unfortunately unless they realise just how hard and desperate things are for you now then they tend not to be so forthcoming with help.
Remember as parents dealing with some of the challenging behaviours mums with sn children have would drive many people over the edge.
Good luck with SS and you know wher I am if you need to chat. Hopefully will see you at the zoo.
I know you are going to hate this but lots of hugs coming your way xxxx

[anniebear]

sorry you have such a tough time Davros.

Sorry I have nothing much to say. My little girl (SN) is only 3 and I find it hard enough with her.

But wanted you to know that sombody had read it!!

[binkie]

OK. Feel free to say "so what do you know" (as I don't), but:

• does Risperidone have any sort of recognised pathology cycle: as in, it works for x amount of time but then must be reviewed?
  
  
• what does ds's school think? Have there been any upheavals there? - or if not, does he continue to be the same or have similar new issues?
  
  
• is he feeling/acting differently about the things that have been his special things, trampolining? Horse-riding, or am I imagining that? Is he perhaps growing out of those and needs something new?
  
  PS what are your steroids for?

[InternationalGirl]

Davros - you need a break. Glad to hear you've got some meetings coming up - tell them really how hard it is for you. You still up for lunch this week?

[coppertop]

So sorry, Davros. I have absolutely no experience with this but I wonder if it's possible that his body has somehow become used to the medication that he's on? Is there some kind of testosterone surge that happens at this age? I'm rambling now but hope that someone else will have some ideas.

[Davros]

Thanks everyone. Strangely I do feel better after spilling me guts! BH, do you really think I should tell Soc Svs EVERYTHING? I am scared although I'm happy to "leave a trail" elsewhere if I need to show them how bad things have been. I didn't hold back with Soc Svs recently, apart from "that" and they have suggested a Link worker as DH and I have not had a break from DS for even one night for some years. I got back to them to ask if this was instead of or as well as our DPs. I really can't complain about the support and services we have. I'm just lucky to have a kiddo with these problems. I look at the other kids I know, some hf some lf, some passive some active, some interactive some more closed.... but SO many just do not do this bloody hitting! I can and do accept that he's not going to learn to do lots of things, I just can't deal with this hitting as it soooo seriously affects his future, he won't be able to go anywhere as people just will not tolerate it. I am desperate to stop him hitting but, as I say, its been going on for some years at a lower level and I just can't make any impression on it.

[anniebear]

I think you should tell them everything, otherwise they wont know how bad it is getting

[Jimjams]

We've had episodes as you know, but nothing as constant. The way I get through them is to think they will finish but that's not much use here.

What is the trigger for hitting. Is it all the time? Is it in response to things going wrong (even simple things like dropping something) or is he always wound up? I know you don't think diet could help your ds, but have any new foods been introduced? Forget gfcf, as I've said before ds1's worst case was from peanuts. When he was having them he was just like thins; constant hitting of his head over anything- and really hard, on concrete the lot. He was permanently wound up. The difference within 2 days of taking them out of his diet was amazing (so if there are any suspects I wouldn't trial them for longer than a week).

Alternatively as already mentioned can you alter the medication. I remember you said before things improved when the medication was increased.

DS1 has started to half kill the cat (really don't know what to do about that to be honest) because he likes the noise she makes when he's hurting her. I really know what you mean about being a carer- I've felt like a supervisor this week, just contstantly having to know where he is to protect the cat and the other 2 boys (they make interesting noises as well). As I said I only really get through it knowing that it will end soonish; maybe it is time to look for some overnight respite? I know you have quite a bit of help- but is that with ds or with dd? Maybe you need some more. I'm going to get more- I need it (just printed out one of your ads tonight btw to copy) - and am hoping I can lose that carer feeling for some of the time.

Is it getting harder in some ways to balance ds's needs as dd grows older as well. My cleaner got it right last week she told my mIL its like having 2 separate families as the supervision and needs of ds1 mean that you can never do anything as a family group. Sometimes I think it would be a lot easier if we could just live our lives round ds1; we'd probably be able to do a lot more. I know that prisoner feeling well as well.

Are there other medications that could be tried? Perhaps puberty is messing things up?

Any chance that he could be in pain? I know you've had teeth done recently. Worth mentioning to the paed in case he can run other tests?

And you know I don't dish these out but (((((hugs))))))

[ScummyMummy]

Poor you Davros. Sounds really, really rough. A bad patch extraordinaire. I've got everything crossed for it to end soon. I think that unfortunately you are doing all the right things already though, except the hitting him bit.

I totally agree with binkie and Jimjams- it sounds like you need to get his medication reviewed and push for some respite urgently. I've come across resperidone more as an adult anti-psychotic drug (though I knew one kid with autism on it) and it can make people irritable, anxious and agitated, ime. With adults, psychiatrists often prescribe meds to control the anxiety alongside it, I think. I don't know if this would be appropriate for your boy or if it's happening already but I'd definitely think a medication review is a necessity.

So is getting you a break. Are you anti him staying overnight somewhere? I think you need to think about changing your view on that, though I can't even imagine how hard it is to contemplate. But real rest doesn't come from having a carer take him out for a few hours, ime. You need a proper break. Why a link worker? That could take ages to arrange if it's the type of scheme I'm thinking of. Isn't there a properly staffed respite centre in your area which takes kids for weekends? Definitely talk to social services and tell them you are at breaking point and need respite, even if you decide not to tell tham everything about the hitting stuff.

What do school do when he hits himself or others? For the moment could you follow their strategy, if only for consistency and to underline a definite decision to stop hitting him? You could then discuss more workable longer-term strategies with the paed/social services/school etc. I think even if hitting "works" in the short term it's to be avoided and if you feel a bit more in control of your reactions to his behaviour you might feel a bit better about your relationship with him. Sorry- I know all this is bloody easy for me to say.

Lots of love and good wishes to you and the boy, anyway.

[eidsvold]

can't really offer any advice or suggestions... just wanted to let you know that you are doing a fab job with what are very difficult circumstances. I can't begin to imagine what it would be like in your shoes. I also understand your anxiety over the hitting.

DOn't beat yourself up - remember we all do what we think is best at the time given what we know.... No one should condemn you.

Hopefully some of those pots provide help and some solutions.

Sorry things have been so tough for you and your ds

[Fio2]

you have already been given such great advice already, so dont want to repeat what otyhers have said. Just wanted to say, its bloody hard. Dont be anmgry with yourself over the hitting thing. My dd self injures as you know and it drives me mad, especially the biting. She is going through a really pinchy and hitting stage at school aswell as at home and keeps pushing. Tbh she has been a bit better over the holidays as ds tends to distract her better than me! He acts like mother hen with her. I have just found as she has got older, some things have been dealt with and other things keep cropping up iykwim. the joysd of living with a complex human being

Have you had your steroids reduced now? My sister used to take high dose steroids and it really affected her moods and made her terribly depressed. Please look after yourself and dont be too down about things. Crikes if and when you meet me you will know you are doing everything the best you can, i feel completely useless sometimes and just as if things are muddling along

[potty1]

Davros - I don't have a clue about what you have to deal with everyday or how you cope with it. I'm sorry that you feel crap at the moment and that yesterday's fracas has probably made you feel worse.

I hope that someone can give you some answers and some help with this. I agree with Fio about the steroids and with Jimjams too about the puberty thing. Dd has long term meds (medical stuff)which have worked like a dream but last year (she's 11) it all went pear-shaped and it was mostly to do with puberty, growth and the meds just not working for her in the same way they had.

Hope things improve soon.

[maddiemo]

Davros Not had time to read all replies. I do wonder if this is age and hormone related. Don't have any useful advice but feel this may be a factor. My nt ds exhibits many macho male behaviours at the moment and there has been an upswing in physical incidents. I could be off mark but it may be worth mentioning to paed and perhaps adjusting meds.

Autistic ds hits his head as a stim and enjoys it. I totally ignore it as my mum gets very upset over it and I have found this just enforces his behaviour. However, what looks acceptable but odd at six is a different matter at ten. Is he hitting at school? Are they also finding him harder to get through to?

I think I would tell social services about the hitting, you need more support in terms of respite etc. Also, although you may be given advice on implementing change for ds the theory and reality are often poles apart.

[RnB]

Message withdrawn

[Davros]

Thanks everyone, I'll try to answer as much as I can. It certainly helps to see what everyone is thinking and getting my thoughts in order and a few ideas for strategies.
I am ashamed of the hitting and I was so unsure whether to say it here and thought of changing my name..... I feel more in control (for now!) by admitting it though.
I think puberty is definitely an issue and our Paed has talked about this, plus "being a boy" of this age and horse play, pretend fighting instincts etc. The medication definitely needs reviewing although we see our Paed every 3 months or so and I can email or phone him in the meantime. I wonder if we should give more, split the dose differently, add something else or switch. I know that sometimes meds can cause the very things they are supposed to deal with if the dose is too high so we recently reduced his medication just so we could assess the affect it is having. Well, he went completely wild and we decided that was an interesting experiment and put the dose back up what it was and he was MUCH better. He seems to be on a higher dose than the few other kids I know who are on it, and of course it needs adjusting with natural growth and the weight gain. Our Paed has said we can go higher but we are reluctant to willy nilly, you know, we don't want to feel like we stuff him with drugs if he behaves in a way we don't like rather than trying to deal with it together with the meds. It is silly because if you're going to give meds you should just buy into it but its hard to come to terms with.
The hitting is weird as its so complicated. There is what I call "protest hitting", i.e. can be related to a trigger or is obviously due to some frustration which can be very hard to pinpoint and there is the "leisure hitting", i.e. done in passing, often when no-one is even watching or in the same room (I can hear it) and seems to be "fun"!
The diet thing is interesting as I do wonder sometimes about this as the type of behaviour can be quite hysterical and wild cackling or open-mouthed howling, like you might expect after a can of coke and a tube of smarties! But his diet is so repetitive, there certainly aren't any changes to it that could account for a dramatic change in behaviour. He does scoff peanut butter like its going out of fashion so I think I will take it away and see if it helps as a start.
At school they use a token system. I know this works well with him but its very difficult to implement at home in day-to-day life. This is why I have asked for a home visit, so they can suggest something realistic. At school they are seeing these behaviours (and on the mini-bus) but of course the school setting is much more structured, supervised and with a high staff ratio. Even then they are unable to take him out on community trips! I can still take him shopping, I'm going to try the barber this morning!! So he's not impossible ALL the time. I have been asked not to take him horse riding as he was hitting the horse I totally accept this but I find the people at this place totally hopeless with learning disability, they told me he was being naughty, they have no understanding or sensitivity and its Riding for the Disabled! Maybe he does need some new activities? I'm also thinking of relaxing things like yoga, massage etc which we used to do before DD came along and sucked up my time!
I take steroids for an illness called Scleroderma. I started on 50mg which was like heaven! Over the years I got down to 1mg!!! I seriously thought this January that I was going to come off them and be discharged..... BUT my lung function test was worse so I had to go in for another lung function, x-ray and CT scan and they put the steroids up to 10mg a day and told me to forget about getting off them for some years Not only was this upsetting but, obviously, a set back in my health although I tend to treat this as a minor issue compared to the other things that are going on. But I do think the steroids don't help but then I feel bad that I'm just using it as an excuse.

[Jimjams]

Just a quick one Davros- and I don't want to sound flippant in reply- I'm still digesting the rest but RE Riding for the diabled.

A mum down here rang the local RFD to arrange some sessions, the guy said "is he fat? they're all fat these disabled kids, I won't take them if they're over x stone" (the child had autism btw and wasn't fat). The Mum obviously didn't take him there.

I wonder whether there are some dedicatded places (the donkwey sanctuary near here for example is supposedly very good) and for others its just an attempt to drum up business?

[Davros]

I think most of them work there because they like horses, plain and simple. I also think they now get a lot more ASD and learning disability than they used to and they haven't had the training or experience to understand or handle it. Even so, that's no excuse and I am brewing to write a letter to someone or other! We've got Kentish Town City Farm very nearby, I might give that a go. DS has never been that enamoured with it tbh, but we were on the waiting list for 2 years, its not something you can recreate at home (!) and he doesn't HATE it so I think he can manage something that isn't his favourite thing once a week. And I like gossiping with the other mums of course

[noddyholder]

Davros would it be ok if I cat you to ask a question?

[Thomcat]

Davros, I have absolutley nothing I can say, if bloody only. I just couldn't not say anything at all and pretend I hadn't seen this! I can't even begin to imagine where you start with all this. If there is any thing myself, or mumsnetters in general can do, please, please just ask. Be it a meet up for some relief, the offer of a baby sitter, soemthing we can send, like the pics of white goods we sent JimJams, anything, i can't think what we could do to help but if you can please just shout and it will be done.
A feeling very useless - TC x

[shey]

Just wanted to let you know I am thinking about you and the children. My DS is only 3 so I haven't much advice to give. Look after yourself though, it is only by feeling physically and mentally healthy yourself that you can do the best for your ds. (easier said than done, I know...)

[Cosmo74]

Davros - Don't have much advice for you but just wanted to let you know I was thinking about you and hope that things start to look up for you. As you know I am only new to this and others have offered the same advice as I would say - check nothing has changed in school, nothing new introduced to diet, but think that it may be due to his age/hormones - I know my sisters who have boys said that from around 10/11 year old their kids behaviour changed and they are 'normal' ( hate having to say that) kids. Best to get to see docs and social worker and be honest as the more honest you are the more likely they will help you.

BTW you are in no way a bad mother - you are wonderful mother and a great support to alot of people here, as you have been to me on many occasions. I really hope that you get some help soon.

Take care

[binkie]

I'm shocked at Jimjams's friend's RFD experience.

I can't honestly offer any more ways to think about things - except that on hitting with no trigger, can you tell whether it is conscious, as in deliberately done, or unconscious/compulsive? Does he look surprised afterwards? Just wondering whether it might in fact be something tic-like rather than behavioural.

I asked about the steroids as my mum has recently had to start being on them long-term (giant cell inflammation thing) and she finds all sorts of unexpected energy- and perspective-sapping effects. While they're essential, they're certainly available for blaming!!

[Davros]

Binkie, forgot to say earlier - what do you know I think there is definitely a tic element in there but its all mixed up. I have joined Tourettes Society and got a list of experts but Paed said he was talking to Psych colleagues so want to find out what he suggests when we see him (22nd June). The thing with steroids (and other meds I'm sure), it feels much better than being ill iyswim! I couldn't have managed without them and I'm much better, just not as better as I hoped.
Thanks everyone for kind thoughts and help and advice. Its nice to get some much kind words and attention after such a horrid confession. Feels like AA! TC, thanks for the offer of practical help, it is very nice of you. If he takes a liking to toilets or something you can get printing
We had a lovely morning today. Hung round at home, went to the post office and then to barber!! This was an experiment as he is quite resistant to haircuts but it went well. The barber was recommended by a friend with a son with ASD, he was really quick (and cheap!) and friendly, not phased by anything. At the end DS even started playing with one of the dreaded hairclippers!

[coppertop]

I'm glad the barber trip went well. Next thing you know we'll all have to start sending you photos of hair-clippers.