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.....

Davros - blimey! I cannot say any more than anyone else here, all of which are excellent suggestions. Really glad to hear today went well - the barbers is one place that my ds will now just about tolerate (after many years) so am glad you found a good (and quick) one...every little helps as they say.

I understand about the hitting thing, it must have been difficult to admit to it here and again, it is a step in the right direction (one of 12 steps perhaps, talking of AA!).

My first thought was that maybe as ds has gained weight that the Risperidone needed to be increased, but I totally understand that you don't want to, especially as there is, as you say always a downside.

Also that you defo need some respite, and pronto. I would be honest with SS about ds's hitting too.

I'm sorry I don't have anything to say except that you are a lovely (I have met you, so I know), great Mum to your children and maybe you just need some time to yourself and a rest and to accept that sadly you do need to take the medication but you have to look after yourself or you will be unable to do the things you do now for your family.

I was thinking about you yesterday after that awful thread and...well damn it, i'm gonna risk your wrath and send a hug too, so there! ((((hug))). Take care and as Thomcat said, if there's anything we can do to help, you only have to ask. x

Davros - just seen this - . Feeling a bit crap that I didn't realise things were so bad. Also feeling crap that I really can't help at all.

All I can say is that I truthfully think you do an amazing job and that if sometimes you are driven to do things you wish you didn't, well, it is understandable. Utterly and completely. I can't say for sure that things with your ds will be worked out, but I do know that you will do your absolute best, and that is all you can do.

Davros I dont have any advice, but just wanted to say I'm thinking of you. My problems with DD3 are very little compared with what you are going through. Do tell social services everything.

Davros, no idea what I'm doing here hanging round SN as usual, but I am so sorry you're having such a nightmare of a time. I have been reading lots on Pubmed in the vain hope of finding something that might be useful. It's strange, because most of the studies of Risperidone for autism seem to say the thing it helps with the most is self-injurious behaviour. It does sound as though the dose might need to be carefully titrated.

I'm sure this is irrelevant/of no possible help, but althogugh I am generally quite a happy little soul I had a nightmare year or so around the time I was 9/10. I was unbelievably anxious and depressed. It passed gradually and by 11 I was all sweetness and light again. I do think it might fit with this being a "phase" where your ds is experiencing high levels of anxiety connected to hormonal fluctuations, and it will get better in time. Not meaning that in the sense of "ride it out" obviously, just that things may improve as Jimjams says.

My mother is still on about 25 mg of steroids after 3 years, and feels completely crap (same disease as your mother, binkie). I hope you manage to get your dose down before too long.

I daren't send a hug, but I would if I thought you would tolerate it

Davros, I just saw this and wanted so much to respond to you. My middle stepson has ADD, when he was younger (about 4) he was diagnosed with ADHD and then he went right into depression when he was between 10-11. We had him on Wellbutron and Risperdal in the evenings also which caused weight gain and nose bleedsoccasional bed wet. He is not autistic, so I could not possibly compare him to your son. I just wanted you to know that we had to have his medication adjusted and he was not really happy until we titrated him off of all of his medications entirely as the weight gain was really hard on his self-esteem. He's also got some OCD tendencies (washing hands, excessive use of condimentsat one time he couldn't swallow anything for fear of choking). From my experience, puberty threw a wrench into the works along with any changes in his schedule. Summer Break, Spring Break, Starting School, etcapproximately two weeks before a change, his symptoms would increase. The Tourettes and tic-like behaviors might really be helped by Cranio-Osteo Therapy and Massageplease ignore if you have already tried this with little or no result--just offering up anything that I know to tell you.

I took him for cranio-sacro therapy and eliminated dairy products for about six months which seemed to help his immune system and calm him down. I don't know what you believe in, but I believe that all of the therapies should be given a chance if you are able to expose him to it and can afford to do so. I recommend this highly along with trying different diets and possibly taking him to an environmental doctor.

Please be good to yourself, you are a wonderful Mum and lend help to everyone. I hope that you feel supported here and that the responses have been helpful to you. All the replies to you have been brilliant.

Davros - I can't really add anything but just to say that I have hit my ds in the past also so you are not alone. I felt awful as obviously its the worst thing to do when your child has special needs and doesn't understand discipline but I know what its like just to lash out. Fortunately I am a lot better now although I did hit him last week out of desparation as he just won't leave dd alone sometimes and its just a protective thing I suppose.

Having just finished the Earlybird course I feel I should offer some answers but I am not sure.... there was one woman on the course whose son was similar to yours and she felt a lot of the stuff wasn't relevant to her. However - how does your ds respond to visual instructions/timetables (clutching at straws here perhaps?) I just wonder if he feels a lack of structure at home? From the videos we saw on the course some of the parents were amazed at how well their children responded to just a simple laminated board with pictures that could be peeled back.

Do you use any of his stimming things to help control his behaviour as a reward? Eg sometimes I use ds's torch to get him to calm down to clean his teeth as he likes me to shine it down his mouth.

Also other ideas is maybe just getting him to do something with his hands to distract him from the hitting - even just clothes with big pockets for him to put his hands into?

There was a funny story on the course about a boy who kept playing with his hair at school. The parents eventually got his hair cut really short. So instead the boy just put his hands down his pants and starting playing with himself!

Anyway not sure if any of this helps but hope you are feeling better soon and get some answers and also some more support.

Ooh yes, binkie, that would be great! I had no idea about the Edinburgh connection. I will definitely CAT you

Davros. I wish I had something useful to say, but I think it's all been said on here already. I'm so glad that you've opened up about the hitting thing, and that you didn't change your username. Please don't feel ashamed. You're coping with such a difficult situation and dealing with problems that most other parents are lucky enough not to know about. I'd like to say that I agree with some of the other posts that you should tell SS about the hitting, but it's not my place to give advice on that because I know nothing about it. I would hope that it would make them more inclined to get you some proper respite, but I really don't know how they operate.

I'm glad it went well when you took DS to the barbers. I'm sure I read on another thread (possibly quite an old one) that it's important to you that DS hair looks good. I can relate to that as well, cos I'm exactly the same with my DS. Luckily for me, hair cuts are DP's department, so I don't have to witness the struggles that the barber has.

I'm thinking of you and hope you post again soon on this thread to let us know how things are going.

The barber sounds like a fantastico. In marked contrast to the riding people, I might add . Hope your week continues to get better and better and better, Davros. At least half term is over which has to be good, I'm guessing?

Eulalia, ROFL at the hands down pants!
Still more good ideas and advice (and I am enjoying the hugs!). I think we definitely need to sort out visual timetabling for home. We are using PECs more but I find it so hard to get on top of the whole thing, its so labour intensive!
I also think giving him something to do with his hands is a good idea, he likes playing with a tassel (curtain tie-back) which may look strange but is better than hitting! We did CranialOsteopathy for a few years, lots of people here know that I am the bigest sceptic around, but I found it was good for relaxation and he enjoyed it so I'm going to try it again. I tend to feel that there is a big difference in what can be helpful for someone as a whole and what affects/improves their autism iyswim. I don't think many "alternative" things improve or change autism (or much else for that matter) but can still offer something useful, so in that case I'm not against trying things. Mind you, I think more and more that DS's biggest problem is his learning disability and not his autism.
Of course I have been thinking about this a lot. It really brings home to me something that I've known and said for ages, that your child has their potential and level of ability within them from day one. Whatever we do with our kids we want to reach that potential so, although we've had excellent intervention and support, it was never going to radically change what he is "like" but certainly what he can do and how he behaves. That is why this is all so disappointing, I am hoping that its a phase (albeit a big one) as we've seen that so many times in the past and I hope hormones are to blame! Somehow this feels different though, maybe because of the (pre)puberty thing, I can't remember that far back! Another difference is the tic-like behaviour which is not quite the same as stims, he sort-of bounces in his seat and shrugs his shoulders, throws his head back and rolls it, these are sudden and just once or a series of 2-3 and very quick and finished. He has a range of weird sounds but the movement and sounds are constant, he can't keep still or quiet. In the past he was active and noisy but not to this degree. I can look back to our famous one and only holiday in 8 years, which was almost 2 years ago and, because it was a different setting I KNOW he wasn't doing a lot of these things, I'd remember having to deal with it or worrying about people staring/noticing etc and I didn't.
The other thing is he seems to have lost his ability to learn something simple and has reverted to some old behaviours that were long gone. I tried to teach him to play his favourite track on the CD player and he just couldn't get it, a couple of years ago he would have worked this out for himself. He has started playing with the water in the toilet (ugh), pulling his trousers down in public for a wee with no warning and a few other behaviours from long ago. This is one reason I was worried about the medication and whether it might affect his memory and processing abiliity etc, something I need to ask Paed.
Something specific that has changed is the decision to concentrate more on PECs and not Makaton. This was decided with school as he has a small set of signs and is also happy using PECs. My biggest worry at the time was how he would ask for toilet! He has used Makaton for this for many years and if they were going to ignore his Makaton requesting and demand PECs I felt that would impact us outside school. His Makaton sign was well established and spontaneous. Now he is pulling his trousers down....... they said they would still accept and respond to his established Makaton signs but I wonder.
Anyway, this is long again! I am going to go through this thread and note the specific ideas and get on with putting them into action!
Thanks again everyone. BTW, he has gone off to school on the bus, phew!

Davros, I wonder if the pulling down of pants without warning is not a regression but a direct result of the drugs? It seems to me to go with the bed wetting- loss of bladder control is a recognised side effect of the drug, isn't it, so maybe he just isn't getting the warning he's used to and has no other way of dealing with it?

(sorry if this is blindingly obvious, have another hug while I'm here {{{}}} )

Davros enjoying hugs??? Go on then. Have one from me too.

Can't do the brackety-huggy thing though.

{{{{{coppertop}}}}}

OK, that's enough, feeling sick now
Tamum, it is a bit of a coincidene isn't it so another reason to be cautious with the medication or split the dose differently. I'm not sure he still couldn't do his sign though, need to ask about this at school.

Dino, forgot to say yes please, I would be interested in hearing about autism in adolesence (sp?) from people with experience. What worries me is that, surely a child with challenging behaviour becomes an adult with challenging behaviour or, if not, what happens? I had an email about something unrelated from a mum who has 2 teenage girls who are both severely autistic and she says they have become much calmer!
I'm also worried about freaking other people out, especially those with younger children. I must say that, of the many children I know with autism, very few seem to have this level of challenging behaviour. You would think it would be common, but I don't know one other that is like this so much of the time. They do have other difficult behaviours of course, but very few that I know seem to go in for SIB and hitting as much as my DS.

Davros - did you get my email?

No! My usual email has been knackered for some weeks and I've switched of CAT after the Old Cow thread! I'll email you later.
Dino, if you don't want to post your friend's experiences here then email me at home but I'll email you too in case you haven't got my temp address.

Oh Davros, I'm so sorry to hear this. Bloody hell. Is there any way it could be triggered by something physical that has yet to be discovered? (just thinking about my DD's two-week rant at life and the case of the splinter in the mouth). I know your DS isn't obviously in pain but could it be anything like this?
I hope you get some answers soon.

ps Sorry, had to run to DS. I really hope it is a phase. Everytime I panic about DD's behaviour it somehow passes and we move on to something new. I did meet a really great mum with a severely autistic teenage son. I could ask her?

Davros- I read a book (no longer have or I would have sent it too you) called "Growing up severely autistic- they call me gabriel" by Kate rankin (jessica kinglsey). It's pretty depressing, but her very autistic son does get a lot calmer in adulthood.

Well I think any info about how people develop into adolescence (still can't spell it) is useful. I'm a big avoider until the day comes to confront something and I think the day has come! So any info gratefully received, I will look for the book too JJ.