Psych wants us to make Ds' life uncomfortable...

[madwomanintheattic]

...in the hope that it will motivate him to get a grip.

Ds is... Lord knows, really. He's dx with ADHD and aspergers traits, and anxieties and phobias. He's 10. He has continence issues. The psych is the outreach psych because his normal psych referred to someone that could see him more often so that we could really attack the continence side.

She confused me completely with her discussion after the 1-1 with him, and effectively said as she left the house, that she doesn't think it's a physical medical or mental health issue, and if dh and I are prepared for him to be really uncomfortable (it seems as though she's talking about not making his bed / letting him sleep in soiled sheets or with no sheets if he doesn't change it all himself) then she thinks she can work through it with us.

She also said she has some techniques that she uses with adolescents (I'm guessing in an nt teen / parent conflict sort of situation) that can make it less of a stand off/ competition as to who can be the most stubborn.

Des anyone have any clue as to what she might be on about? She was talking to me as though I was a part of the problem (which is a whole new world for me, but I know loads of you have been there) - not actually saying it as such, but sort of looking disparagingly at me when listening to my replies about what we normally do, etc...

She's going to call me to arrange a time to get together to discuss without Ds, but I feel completely at sea. Is she really Just going to tell us to ask him to strip and make his own bed? Cos it isn't as though we haven't tried that in the last five years. And it really does get into a 'who is more stubborn?' thing.

Does anyone have any clue what's going on? any ideas at all?

The desmo should work for eight hours which for a ten year old is pretty much a full night isn't it ? (not sure there as I have children who don't need to sleep)

I'd insist that the desmo was tried again, alongside the psych if need be but for me if he has never been clean or dry I'd be wanting more investigation into there being a medical cause tbh.

sounds like you need to go down the medical route again, to rule out any physical causes, I think the fact your DD was late at night training does suggest something physical as well as behavioural tbh. Maybe play dr google and read up on your country's equivalent of NICE guidelines for treating encopresis etc.

and he is a sweaty kid. fine until he exerts himself and then sodden. sweats at night (and when we have been through periods of trying to use an alarm, have had issues with it being triggered without wetting - the ones with the clip on the pants are less prone to sweat. the mattress sensor was a nightmare, and i would be out of bed three times and he was dry.)

i have wondered idly about his sweatiness being another clue, but with so may people on the case who supposedly know what they are talking about, haven't done anything about it...

i have also wondered about the seeming overactivity thing - both bladder and bowels. He seems to produce an awful lot of waste product for a child that ingests so little! I mentioned it a couple of times, but the paed just looks at me like I've told her he likes ketchup, or something else completely irrelevent.

madwoman - I don't have any experience on the medical side of this (dd1 almost dry/clean at night at 7; dd2 clean but not dry and only 5), but wondered how you had got along with the dietary stuff?

dd1 sweated buckets, and had little/no sensation of needing the toilet before she went gf/cf. sounds bizarre, but there is quite a clear link. same with the 'sleep of the dead' scenario - once she was out, she was out and nothing disturbed her (literally - we had a team of builders jackhammering the chimney down/out in the room next to her as she slept blissfully through it all, on her daily 3 hour nap... same with the fire alarm going off outside her door repeatedly when we had an electrical fault - not a peep from her). these days, she sleeps more 'normally' - well (once she is asleep), but rousable.

we did give the gf/cf a whirl (we were on the GAPS thread ). we found it really difficult as he limits food randomly, due to... well, anything really. he adored fish and it was easy peasy, but then found a bone. anyone else would have put it on the side of their plate and carried on (there was no choking, it didn't even get in his mouth) but he hasn't touched any fish since. he does similar things. he eats fruit and sugar from his lunch box, but nothing else. if we don't put fruit and sugar in, he doesn't eat anything, and then he'll come home and ask for a snack (sugar). so he does seem to have some of the tendencies that suggest that route, but nothing official.

I do need to give it another go. With some nutritionalist support, I think. I do notice that his bowels are worse when he has a heavy gluten day - but I don't know if that's because I'm looking for it iykim? (and not in an accident way, just the stench pervading the house from where he is residing on the throne) - in theory he had the coeliac test done when they did bloods a couple of years ago, as i had asked about gluten intolerance. they were v vague, and didn't come up with the results, but were mostly insistent there was no issue...

ds and dd1 both do the fire alarm thing.

it was last summer, i think? maybe it's time to try again.

ah - bugger re: the fish. it's that kind of thing which really can screw up attempts to change diets... maybe enzymes might be the way to go instead? huge support for digesting the bits he really shoudln't be eating, while slowly trying to alter diet? There's quite a good book on it - Karen de Felice, I think? - and I know dh (dairy issues) finds them helpful when dairy is unavoidable (conferences, weddings etc - for some reason he will not tell anyone or 'make a fuss' when is concerns him, but will go all out to ensure dd1 is catered for )

we live in alternate medicine central, tbh, so it should be reasonably easy to find someone (we have a great health food store, too). i'm not sure how to find someone that actually knows what they are talking about though, I found GAPS interesting, but quite difficult.

GAPS is extreme - I am still summoning up the courage after 5 years of gf/cf! . but it is def interesting. I do wish I had the courage to take the plunge (might wait for a working kitchen though! don't think it's a microwave friendly diet )

you could take a looking at Treating Autism or TACA (talk About Cuing Autism - at the name, btu it is about biomed stuff) for recommendations, maybe? TACA is States-based, I believe.

I need to have a read around. I looked last year, but then we postponed it all as he was referred for the full psycho-ed assessment. and because he didn't have enough ASD symptoms for a full dx - just 'aspergers traits', we've been concentrating on it being largely ADHD since then - so he's been on vyvanse, which school are saying is a miracle cure (but I've seen no evidence of improvement in organsiation skills etc - they say he's now able to focus and is much easier to keep on task). We see no real change at home, and tbh school seem oblivious to the fact there is the occasional day when he forgets his meds...

He's completely inscrutable though. I picked him up from school early because of the psych appt yesterday, and he was full of beans. He said he was a bit upset because his teacher had been running an impulsivity experiment and he wouldn't get to collect his reward at the end of the day because I had picked him up early.

They had all been given one of those strawberry liquorice stick things in the morning, and told they had to keep them on their desks all day, and they could eat them whenever they wanted (and occasionally the teacher would say 'everyone have a bit of your stick') but that anyone who still had some liquorice left at the end of the day would get another one to take home. So ds was upset because he didn't get to claim his second stick.

i thought this was really interesting, because I know for a fact ds can't concentrate if he knows there is sugar in the house. he just can't. so I asked him if he'd got some left, and if it was hard. He said it was easy, and had been making sure he had enough left so that he could have some when he was told (safety margin) and also have some left at the end of the day to get his other one. I asked him if he had spent the whole day concentrating on his stick, or if he had managed to concentrate on his school work, which was obv still all going on. He said it was fine, easy, no problem.

I was quite surprised, as I knew for a fact that yesterday morning had been a living nightmare, and I only realised he hadn't had his meds after he left for school, so in theory, the ADHD kid had been aceing an impulsiveness test all day, with no ongoing concentration issues. i just said 'oh, that's interesting, you didn't have your meds this morning and you managed to concentrate on your school work, and do really well on the impulsivity test!' He instantly switched to a really apologetic and woe is me voice (the other one had been bright, alert, and interested) and started explaining that actually it was really hard, etc etc.

I absolutely called him on it, and asked him why he was putting on the 'woe is me' voice, when he had been massively interested and excited, and had been enjoying telling me all about it. I asked him which one was true - either the 'it was easy peasy and I had no problems concentraitng' version, or the 'it was really hard because you reminded me I hadn't had my meds' version. He got defensive and upset. I told him I wasn't trying to upset him, but that I really liked the honest answers, not the ones that just came out with what he thought he was supposed to be saying, and that he had confused me a bit, because now I didn't know which was true.

We are trying to work out whether these meds are helping - the ADHD meds were supposed to maybe help him concentrate on his body awareness a bit more, which might in turn help with the continence... as well as the adhd issues.

again, no useful advice, but I feel your pain re:getting some sort of coherent explanation about what's going on, I find it hard to get info out of DS unless it's something that massively interests/motivates him........ interesting that without his meds he managed the sweetie experiment so well /tsssk tho dentally at them choosing that sort of way of doing it.

Sweeties make me crazy. He turned up a couple of weeks ago saying he needed money to buy sweets for the prizes for the French carnival quiz. Thy had all been given jobs and his was to buy sweets. The same again the following week. I tired to ask why we were the ones coughing up money buying sweets for a school test, but he just gets rigid and hysterical then, because we are trying to force him to break the rules. and he Has to buy sweets for the quiz. It's his Job.

And yeah, 'interesting' is right. I have no blooming idea at all whether he spent all day fixated on the liquorice and did no school work at all, or whether it genuinely didn't affect his concentration at all. Or whether he was managing absolutely fine to concentrate on all of the above, with no meds.

His habit of saying what he thinks you want to hear makes it impossible to get a straight answer. Even the paed can't do it. If she asks an absolutely unequivocal question, and he's not sure what the answer is supposed to be, he completely withdraws and you can see him wrestling with it, working out what all the possible answers might be, what response they might elicit, which answer would get the best outcome... You can literally see the spiral. And he just can't answer. Because he doesn't know what the 'right' answer is. Which I guess is how we got to the anxieties stuff.

I think the psych and I are trying to get him to do the same thing, we're just coming at it from opposite angles. She thinks the best idea is to force him to accept responsibility, by making his life an absolute misery (well, uncomfortable), whereas I agree that most of his problems are due to external demands, and want to reduce the demands and for him to accept the responsibility because he works out that's what he needs/ wants to do. And that it's ok to not know/ be wrong.

Oh Madwoman, I felt so sorry when I read your post. What a nightmare it must be for you.

The first thing that came into my mind when I read your post is that the bedwetting could be something entirely different from the rest of the continence stuff. My brother for example, entirely NT, wet his bed and was an extremely heavy sleeper until puberty, when he stopped bedwetting. Every night, despite all the alarms, consultations etc. It was a family gene. My uncle and aunt had had same problem.

I remember my brother just had to take the blanking out solution. He too was completely used to waking up a wet bed, and seemed completely unaffected by it. That was the only way he could keep sane I suppose. He had loads of friends and v sociable, so in a way he got off lightly stigma wise.

I too think the enema treatment sounds quite frightful and would be enough to give anyone a complex. Whatever the problem, that level of interference would make anyone resistant.

Another friend had a 13 year old with long term stomach issues, and she turned out to be coeliac. 13 years to diagnose! I think you should investigate that again.

It reads like you are being shunted from pillar to post with these issues, and everyone is tying you up in knots. You might find that it does stabilize if you cut down on sugar (definitely one of reasons why ds had very loose stools, lots of apple juice etc

Were you hoping to home school ds, it sounds like it might take so much pressure off - does that sounds contradictory? and he and you might come to some equilibrium, hard won perhaps and he can almost do his own thing and perhaps shift a lot of the professional intensity off him. I know my child is a bit of an attention junkie, and sort of thrives in a toxic way being centre of negative attention. But he thrives in much more natural way when he knows what he is meant to be doing and just relaxes and enjoys the things he is interested in. He gets incredibly upset when he has an accident so we've learnt to move very quickly on - that's what gets his equilibrium back, so that he CAN then function normally and not obsess or feel alienated.

Tonight we had a tantrum because I took fuse out of the telly [somehow we got through afternoon in other more productive ways, tennis, cooking, cars). It was amazing how quickly he settled back into bedtime routine, once he knew there was going to be no telly (football match hell at moment with Euro) and his Dad made that clear. I notice how much more quickly he settles down when we are brave enough to stick to our guns. We are so frightened of him screaming that we tend to give in much more quickly. Not good. We have a lot to learn parenting ds and dealing with his ASD.

I'm going to go back and read your posts properly now, in case I have misconstrued Just had a another thought, have you tried asking ds what he thinks is a good plan - less practical responsibility, more emotional responsibility for the problem? My ds does a lot of saying, I don't want to talk about that, I'm not discussing that, which makes me realise how he really doesn't like his behaviour.

Your last post about you wanted to reduce the demands seemed to be absolutely spot on. I think when you are very clever highly driven person, the external demands can be the final straw, leading to short circuit. Ds is happy to give himself demands, I suppose it is encouraging him to see what he himself likes and finds interesting, then he is completely " motivated". I am constantly amazed by how motivated he is, when he is interested in something. It doesn't work to try and force him to be interested in things, or do things which are alien. He is perfectly sensible about a lot of stuff, just needs reminding.

I've reread your posts and I think you need to get away from all these professionals. Trust yourself more.

I think your ds is picking up on the way all these professionals are saying different things, and he mirroring the multiple theories in the way he talks. He of course is only 10 and doesn't know what he is supposed to think or the reasons for his actions.

Of course he is clever, he is your son after all and you are highly intelligent...it is not surprising he is thinking of things from all sorts of angles. Wouldn't you?

I think once you accept that there are difficulties which can't necessarily be changed, you paradoxically become much better at dealing with them.

Sometimes I feel like I am fighting a battle for "my son", to be as he should be, not as he shouldn't be. But that doesn't really help, because he is himself, and the more I fight the more I take away all the pleasure of being with him, as he IS. Dh is very good at just reminding me what a delightful person ds2 IS, even though he is difficult too.

Have you discussed with the Psych other possible strategies, saying that you are not happy with them? Or trying a different psych?
With DS2 - who is my biggest 'soiler', his paediatrician and gastroenterologist reckons that he has conditioned himself to not feel or react to accidents. So someone that can smell whats for dinner as he walks through the door, cannot smell the fact that he has soiled (which DH does as soon as he walks through the door) . He has to pull his pants down to check if he has soiled. They reckon that because he can't control it he has told himself that it doesn't happen.
TMI alert - the other day, I was wiping him after he had finished, (he's 7, but self care has come very late to him) and asked him to bend his knees a bit. He did, and as he did so, more came out, and he was completely oblivious to it.
If your DS is like this, the pysch's method would be punishing him for something that he may not even consciously know about.
I feel for you, its a daily hassle and you think to your self that you never imagined yourself still clearing up 'crap' when they are this age. It is endless as who knows if and when some lightbulb will come on and suddenly they will 'get it' . smelly to freshen the air, and to relax.

Thanks ladies - I need to read and digest, and am currently juggling dd1 and dd2's dress rehearsal for their dance show on Saturday, and trying to get Ds half an hour down the road for his cubs' hike. This includes full stage make up for the girls, including trying to get eye liner and lippie on a child with athetoid cerebral palsy, whose involuntary movements kick in every time you get near her with an eye pencil...

I could really do without four hours knocking about the high school changing rooms tonight (and may well partake in a long cool glass of something or other later... It sounds just what the doctor ordered, never mind any of the various psychs and Paeds and whatnot)

Thanks again, will have a read later when it's less manic x

Just an update - I have an appt scheduled 1-1 with the psych this week to go over entire history and come to an agreement, and the sec for the original psych is going to call me back with an appt date too.

I'm quite a bit calmer about it now, and everyone's advice and experiences have really helped to clarify how I feel, so thank you! I think I was under the impression that she had had a full brief from the main psych, which may not be the case. Judging from her phone call this morning she's reread the file (probably because of the look of horror and 'here we go again' on my face last week) and realises she might need to discuss what we've done before... So, apart from being all in the wrong order, we might be able to sort it out before it gets any worse.

Ds apparently told dh he doesn't want to go to cub camp this weekend. I'm guessing this is because he thinks he's going to have to deal with no pull ups and a sodden sleeping bag on his own and in front of everyone else.

I feel for you. Could ds attend cub camp on a day basis? Our ds was allowed to do this. Your son sounds similar to ds, who has ASD and ADHD and LD and is a little older than your lad. I think our lad has very poor body awarenes ( sensory anomaly) and poor attentional skills which combine to make it hard for him to know his toileting needs until too late. He also sleeps very deeply and sweats in his sleep so wetness alarms give the whole street sleepless nights going off all night every few minutes!
Ds paediatrician suggested getting tough ( not changing his sheets, cloths so he owns his own issues, punishing and being blunt) but also said it would be cruel to leave him in wet bedcloths if he really cannot help it. We are concentrating on getting ds to realise soiling/ wetting is socially unacceptable - something he does not really yet get. He has not had any specific medical investigations but has a long history of constipation which I think is the same underlying problem as wetting - he has poor awareness. We are doing some retained reflex therapy in the hope of better continence but progress is as yet slow.

at missing cub camp. When I help at Beaver camp we always have a wet bed, and usually a poo or vomit incident as well. And cubs are a lot bigger; it's just that a bit more forethought is needed to try and make sure any accidents aren't subject to too much publicity. Given the minimal amount of sleep which usually occurs, would a wee at midnight and another at 4am be useful? DH and I are police checked, so we usually 'arrange' for an extra adult to be 'needed'.

Oh, we've been through the whole cub camp thing before - I used to run cubs, lol. Last time dh went with him. He just refuses to toilet full stop when he's away (phobic about public toilets) and so in the past when we've told the leader that he needs reminding to go, he just goes into the toilets, waits for a bit and then comes out without going. Of course he then soils and wets etc, but still won't admit it, and just stashes everything in his bag... It isn't fair on the leaders, tbh, as he won't let them help him (and I say that knowing I would happily take another cub with the same issues away with my cub pack - and have taken bedwetters etc before).

It's the first time he's said he doesn't want to go, though... that said, dh announced today that he has to go to Romania on Friday, and won't be back until Tuesday night, so he can't go with him this time. (also, this pack gets right on my nerves - bearing in mind it's Monday, and they are supposed to be going on Friday, I haven't seen any paperwork, don't know where they are going, or indeed anything except there is supposedly a camp this weekend. Bearing in mind I used to do all our planning, it was all done two weeks before and were ready to roll. This lot don't instil me with much confidence, so perhaps it's just as well. don't even start me on canoeing. No swim test, no permission form, no info....) thanks for thinking of him, though, both! I can't really come up with any solution until I get some info...

I'd be interested to hear if the RR stuff helps, magso...dd2 has RR, but I hadn't thought of it relation to Ds, as they are so different.

are either psych 1 or psych 2 working with him specifically re:phobia of public toilets, as that is going to have an impact on anxiety/quality of life?

That was what the entire psych referral was based on initially, tlp. So far, psych 1 has been doing a lot of body awareness stuff, and psych 2 was supposed to be seeing him more frequently so that she can give motivational support whilst he changes his toilet habits... So effectively she was supposed to be providing a lot of hands on advice and feedback whilst we all put in a huge effort to sort it all out.

I have no idea what I envisioned, to be honest - I think I expected her to be working with him on the anxieties and phobias, and him reporting back to her how it was going. It hadn't occurred to me that working on the anxieties and phobias would mean such an upfront battle with them - with me in the starring role forcing him to literally and physically face up to the consequences, especially when it was so disastrous before.

We are supposed to be doing desensitisation stuff with him in public. But of course he's too old for me to go with him to public loos now. So I have no particular comeback if he just refuses to go and says 'I don't need to.' dh was supposed to be doing it, but tbh I can count on one hand how many times he has - mostly because he's just not there, or is in too much of a hurry.

We have had a few successes. He will tolerate the ikea toilets... because we only ever go as a family if we've been in town for a long day, i've made dh take him etc, and the last time we went, he went of his own accord for a pee. Yay! At the mo it doesn't seem to transfer though, and he is most stubborn in places he hasn't been before. He'll use a hotel bathroom in the room, but not the public ones. We've been through the germs thing and it isn't that. It's just other people knowing he's toileting...

sounds like a big heap of issues to tackle at once, in terms of dealing with the out and about stuff and the home stuff all at once.

don't know if this information may be useful re:shy bladder syndrome
en.wikipedia.org/wiki/Paruresis.

btw I am taking such an interest because I have had germ issues with public toilets (not quite to the extent your DS has tho!). anxiety problems can lead to rather skewed logic, it has to be said.

Thanks for link - that makes a lot of sense and puts names to everything. . And probably reinforces that the gradual approach is far more useful than full on 'face up to your actions!' mode... The first psych does seem to be following that line, with her body awareness and relaxation stuff...

Ds is the king of skewed logic.