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?

Sounds frightening. As her to clarify in writing what her strategies are for you to consider before agreeing.

I wouldn't say that requiring a ten year old to strip and make up his bed when he has soiled it is unreasonable or a question of making him uncomfortable more a case of him taking responsibility.Whether the soiling had a physical or psychological basis I don't think would matter.
I'd Google Webster Stratton as I think that may be what the psych is intimating tbh.

Even if you're right, the attitude is a bit worrying 'make him uncomfortable'

I mean, I'm sure DS is less than 'comfortable' when having to deal with the some of the consequences of his behaviour or not eat his afters because he threw it on the floor in a tantrum, but I'm not 'setting out' to MAKE him uncomfortable.

Could you imagine what woukd happen if such a thing was worded that way by an ABA team?

I think though it would be his choice to be uncomfortable wouldn't it? If the bedding is there and he has the skills to change his sheets then if he chose not to change them then any discomfort would be his choice
I'd make his life easier by making by his bed with those billy sheets but at ten I would expect a child to sort out their own sheets and stick them in the washer if they soiled them.

Why doesn't she think its a medical or physical issue? Sorry to state the obvious but have you been seen by a Neuropathic Bowel and Bladder Consultant?

My children are both autistic. I'm going to get gasps of horror here but I made my eldest very unhappy in order to encourage him to learn the benefits of communicating. He is autistic and he used to grab my hand, grunt and sort of throw my hand up to what it was he wanted. I used to deliberately get the wrong thing. eg, I knew he wanted a drink, so instead of handing him the cup, I'd hand him the bowl. That sort of thing.

Eventually, over time, he started to force out a furious "dink" etc. I wouldn't have minded what form the communication took. A word, a symbol from his pecs, a sign - just something more communicative, iyswim.

It was all part of teaching him that his needs were better met by communicating.

Could that be the sort of thing she meant? a way to get him to feel that he is better served by doing something than by not.

however, I would NEVER make a child sleep in a dirty bed. That's outrageous and I wouldn't listen to anything someone had to say after they'd advocated leaving my child in a shitty bed in order to show him who's boss and win some stubbornness competition.

My eldest is 13 now and still soils. He is very embarrassed about it. The paed won't accept that there's anything physically wrong, despite me saying if he was doing this through choice, he wouldn't be hiding it and feeling bad.

sometimes, the 'experts' don't know their arse from their elbow.

madwoman (I've met you on another thread my ds2 10 has some continence issues, mostly in daytime, although some wet sheets. And ASD.

We are trying to steer a way between supporting him and getting him to take responsibility.

I would say that we are much more forgiving of his accidents now than when he was first potty training at 3, which is odd if you think about it... So I think there is an element of familiarity which creeps in, where one gets used to a child behaving a certain way, and just putting up with it.

We are doing little things to try and change the situation.

1. We tell him to take his wet sheets off the bed, and he already finds clean pjs for himself and puts wet ones in basket (he doesn't do this with his normal laundry, but for some reason we have trained him to deal with accidents better than normal life

ditto continence accidents, he has a shower, and we expect him to sort himself out. We don't get in a state about it, just try not to give loads of negative or positive attention.

1. He has to make his own toast, sandwiches, get his own drinks. He chooses his own clothes,and finds them himself from the drawers. We make all that less easy for him, in the sense that we try not to "look" after him too much, as he finds it easy tohave everything done for him, and just expect things handed to him. He has a tyrannical side, so we are trying to reduce the effects of that.

1. We are now expecting him to wipe down the loo seat if he pees on it! We do this religiously, call him upstairs politely but firmly to clean the loo seat!! You may laugh, but I think it is small step in the right direction.

I think when your child has problems you do protect them to some extent, and the difficulty lies in protecting them only in the ways they need protecting, not with things they CAN manage.

I know that a lot of continence issues are a sensory regulation aspect of ASD,holding on, and so forth, so I suppose in a way you do have to "override" the primary urge with some other association, which makes it more appealing to stay continent. Ds has no problem being continent when he needs to be, most issues seem to occur when he not bothering...

Sorry, this a terribly long ,message, but I suppose what I wanted to say was the pyschologist is being incredibly insensitive and unsupportive (and I personally would never have forgiven a professional who talked to me in such a tactless manner - in fact I still haven't forgiven the woman at CAHMS) but of course when you parent a child with ASD and other issues you are in a relationship which is incredibly powerful, and everything you do has a major impact on the child, because I think an ASD child models so much on their parents and parents' responses.

Point 2, was about other areas in his life where we try and get him to be in charge and not pander to him

The other thing we noticed is that we were at our worst veering between very very nice to ds2 and getting very very cross with him, so I suspect the poor child never knew which way the wind was blowing, or why it was blowing at all. I think consistency is the key- sounds like an old chestnut, but if you decide what you are going to put up with, no more no less, then from the child's point of view it is much easier to know what is expected of them.

We have talked through things with our son,and said, this is the new arrangement, we expect this of you, and this is the response that we will give to x or y. And I think he finds it safer to know that when he is throwing a tantrum, he will go to his room for 10 mins, rather than not quite know what the grownups are going to do next...

But you probably do all that already.

I remember the incontinence adviser suggesting that DS take 'ownership' of the accident - but it was just 'pants', not the bedsheets and he was 5.
He had to take soiled clothing and put into a bucket. He had to tell me, and together we would decide on how best to clean him up (shower/wipes etc). Then he had to re dress. It was part of a routine.
In fairness - the best we got was fewer accidents, not no accidents.
CAHMS here refused to see him before medical difficulties were ruled out first (which some were and helped reduce the number of accidents anyway.)
I do agree with swan in that some behaviour can be habit forming. I know that DS tries much harder to stay clean when he is in school than he does at home. I assume because it is less embarrassing, and also that I'm used to sorting him out and he is comfortable with it.

as auntevil and others have said, trying to make the child clean up independently is a reasonable approach to these sort of accidents (as it is really an important life skill, as we aren't always going to be there to clean them up, and others aren't going to be quite so understsanding about our kids bodily fluids!). But to deliberately use the word "uncomfortable", makes me, well, a bit uncomfortable, as none of this is about punishment, or should be about punishment.

One thing that does concern me is that this psych doesn't seem to "get" a)possible sensory issues and b)possible long-term effects of constipation/mega colon - that even though there is nothing massively serious physically wrong, it can still take lots of time to resolve constipation.

That would be my concern, but OP doesn't say if medical issues have been investigated - I would have thought so? My son has bowel/bladder problems, that tbh you couldn't have dx'ed without seeing a neuropathic bowel/bladder specialist. We have to catheterise and use immodium as he has detruser muscle problems, over filling/under voiding, and fast transit. He was told off at school for not getting to loo on time - but now we understand why that is.

Sorry, I've posted a huge reply twice and been thrown out into the ether both times. Both of them made me cry and now I've got to type it all out again. ffs.

Okay, got to get a grip.

on the med side, he had ultrasound about 4 years ago, and then full bloods/ x ray, ultrasound about 2 or 3 years ago. all normal. the paed said he thought encopresis and put him on a strict toileting regime and lansoyl (like movicol/ lactulose). After a year of no change, the paed said there was nothing wrong and he was fine. (dh took him to the appt. i am still to this day furious why dh didn't aks the question 'so why is still soiling then?' but can't go there.)

We moved and the new paed started him with a series of three enemas and now we are supposed to give him an enema every time he soils, and take him to the emergency room for them to administer if he refuses. He complied the first two times. Dh decided to let him use his ipod to keep him calm becasue he refused after that. I don't balme him, He had been crying, waling and carrying on, and he fights if you try to physically move him, so the prosepct of dragging him fighting to the ER wasn't appealing.

He now has become more adept at making it difficult for us to know if he's soiled. I often only find out a couple of days later when i find pants in the bottom of the laundry or (way TMI) chewed pants that the dog has found somewhere. The obvious answer is to stalk him in the evening and check them every day. It feels extraordinarily intrusive - he's 10, and it means me marching into the bathroom when he's on the loo.

every single doc we've ever seen has had a diffrent idea. one told us to send him to boarding school. he's had two lots of hypnosis.

I'll try and catch up on the rest of the post I've typed twice, but am going to send this so that you know I am reading and replying, but my internet is driving me crackers.

We've done the 'responsibility' thing before. He is supposed to get out of bed in the morning straight away, go and pee, and then strip his sheets and take them to the laundry. He just doesn't. He wakes up and picks up a book, and lies in his sodden bed, quite literally soaked from his knees to his armpits, and even sometimes his pillow. He just isn't bothered. When I go in and force him out, he just glowers at me, and strops off for a pee. I can literally follow him around and tell him what to do, and he will eventually do it, but me following him around reminding him just makes him crazy, and sometimes he will just stand there and fold his arms and disappear into his own world.

We did the pants thing for a week. The stand off lasted about two hours and just became a contest of wills. Him refusing (and turning his abck, folding his arms) and me trying reason, logic, and eventually losing it completely. I even tried physically forcing him to get his hands into the water with his shiity pants because the paed told me i MUST get him to wash them. It was like child abuse. He wasn't getting to bed until after 10pm, and there was no imporvement.

I'm going to keep posting this stuff in short dribs and drabs - apols. not trying to drip feed, but I am going to lose it totally if I type the whole thing out again and it crashes on me... so there might be some x posts, but I'll try and respond.

HecateTrivia - I'm well versed in the art of making kids do stuff for developmetnal gain - dd2 has cp and we had to do some pretty uncomfortable stuff with her to trigger both physical imporvement and communication - so I'm not unhappy with the idea per se - but ds worries me because I don't think he's clear cut, and he doesn't seem to have anything that makes him uncomfortable. short of me inviting his best friend into his piss-soaked bedroom, which would scar him for life. He's not bothered if he doesn't eat (he just gets out of control, presumably because of his blood sugar), doesn't drink, doesn't clean his teeth, and would happily climb into a stinking bed and go to sleep.

Psych asked him about losing the pull ups and he became a bit fretty (I am on and off convinced that he has some heavy duty anxiety stuff going on). She asked him if he was anxious and he said yes. But i know from long experience that he isn't that bothered. he reasonably frequently forgets to put them on, and i have to remind him, and he huffs off to get one, and he is quite happy to sleep without. The bed is even more swamped though, so the opull ups are really for our sanity, not ds's comfort levels... mil tried to train him by taking away his pull ups a couple of years ago.nothing happened except she did more laundry. I got the impresion the psych thought that sleeping without a pull up on would be uncomfortable for him (even psychologically) and might help him get up and pee, or subconsciously stop him peeing, but that's just not the case. I just feel like I'm going round in circles.

I can absolutely see that what we are doing is not helping at best, and enabling at worst. He has always been a carrot kinda kid, and stick just makes him dig his heels in. Consequences have never worked with him. We've been through periods where he's been grounded for months, had no electronics, the teachers have kept him in at play for not finsihing work... He just shrugs and simmers silently. It's as though he thinks that we are in the wrong for punishing him.

As an aside, which may or may not be relevant, he's very bright. Despite some social issues, he knows exactly what the (adult) listener wants to hear in any given situation. He saw the school clunsellor for two years at his last school re continence ans some anger stuff, and essentially he manipulated every conversation to keep her away from the stuff he wants to ignore. she also suggested psych next. This psych does recognise his avoidance measures... but I'mnot sure she has sussed that he is just giving her the answers she wants to hear.

so did he never even get chronic constipation/impaction diagnosis, Madwoman?

am quite horrified at the enemas - it's one thing if he needed them to keep "going" reasonably regularly, and nothing else worked but to just give them as and when he soils , and to suggest A & E trips...

sympathies re:stalking/intrusiveness. I am also fed up with being obsessed by poo, and wanting to know every time DS has been (so I know if the right dose of movicol). I am even counting every drink he has to make sure he gets enough fluid. It drives me demented quite frankly.

doesn't sound like the pull-ups are working, or he's producing v large quantities of wee overnight then, if with a pull-up the bed is soaked. I am starting to wonder whether you need to go back down the medical route, tbh.

Swan, I see a lot of similarities with your ds2... and also recognise the pattern of dealing with them. What do you do if ds2 just refuses to accept those responsibilities? (really genuinely interested. the obvious answer is he goes hungry, dirty, and you have to step over laundry...) We have veered between zero tolerance and abdication. (I am on abdication at the mo). i know it's wrong, but I just needed a mental break - his behaviour is exactly the saem whatever I do, and I'm frankly exhausted. I've had so many professionals telling me to do this, do that, and I have, so help me god (I didn't send him to boarding school, which was one helpful solution, but I've done everything else) but I'm totally at the end of my tether.

He complies with a new routine for a couple of days, and then gives up. The psych that did his eval said timetimer clock and token economy to earn screen time. for two days it was fine. then he couldn't be bothered and so ignored the clock, didn't earn any chips, and so got no screen time. and moaned and whined. His teacher is a Carol Dweck fan and he sees this moaning and whining as evidence of 'perseverence', so help me god, a positive thing. This teacher is equally stubborn adn they have a love/ hate relationship. He loses literally everyhing. The learning support teacher offered some help for ds with organsiational skills, and the class teacher refused point blank as she wants him to accept responsibility and do it himself. She is the one that kept us ofr an hour and half at the paretn teacher interview and then burst into tears. She said we needed to get a full psycho-ed eval done as otheriwse he was at risk of dropping out.

I seem to have two completely different schools of thought with the professionals - half of them say 'he has a lot of problems with x,y,z, this is a genuine sn and he needs support', and the other half saying 'he needs to get a freaking grip. make him.'

i suppose the answer is somewhere in the middle ground, which is want this psych wants to work on?

I was under the impression that this one was going to work with ds on the motivation side.

is it me that needs the psych, and not ds1?

Did you ever try desmopressin? Either nasal spray or tablets?
Generally the advice is to use it for six months to train the bladder and then stop. If wetting occurs you restart for three months.
If it works it could make the whole battle unnecessary.

x post.

the paed that did the x rays etc (and obviously all of this has been compunded by the fact that we have moved a lot and so he has seen freaking gazillions of helpful people who have all had a different idea) said that he had impaction and encopresis, and that it could take up to six months to resolve, and we were to introduce a strict toileting regime. He saw him every month or so and told us to carry on with what we were doing as it could take some time to reslove etc. After a year (when dh took him to appt) he just said he was fine, with no problems. (I can't even disuss this, tbh, it is beyond ludicrous. Not even that the impaction was solved, just that he was fine. I was completely baffled when dh got back from the appt. We eventually got the report, and it said something like resolved on it. I'm not even going to start a row with dh about whether he told the paed that it was resolved, or whether the paed just decided he couldn't be bothered and he knew we were moving anyway)

The next prof that saw him said he was probably never impacted anyway, and the xray probably showed a large stool. He suggested hypnosis. (and was also latterly the guy that told us to send him to boarding school).

The new paed is the one that has introduced the lansoyl/ enemas, and referred to psych.

he's been on desmo (had no effect at all - he's a really deep sleeper) and also a couple of other meds which were for daytime stuff (can't remember the names, but initially prescribed by original paed in the uk - something ebginning with e? will see if i can find it.)

I suggested to this paed that we try desmo again, in conjuntion with alarm, as she was suggesting the psych could work with him on motivation to find a solution. (he destroys the alarms - we don't know whether he does it consciously or subconsciously, but I've now bought three all singing all dancing malems, including two with pants sensors and one with a mattress sensor).

i thought this was where we were going, but the psych seems to be off down the 'discomfort' route in search of the motivation, she hasn't mentioned alarms or meds, seems to think he/ we need to control it by power of thought alone.

i can't decide if i want to curl up and cry, or get really pissed off at the sheer lunacy of it all, tbh. and what's worse is I know that I'm not helping... just have reverted to blindly going along with whatever they come up with.

I lied - didn't begin with e at all - oxybutinin.

we stopped them about two and half years ago as they were having no effect. I did want to try again though - I figured his body has changed a lot in two years.

I'd be wanting a re referral to a urologist if the desmo didn't work because he shouldn't be able to pee after the dose and shouldn't need to wake in the night so long as he isn't drinking for up to an hour beforehand.
Does he drink huge quantities? Has he been checked for diabetes insipidus? Has he ever been clean and dry reliably/

not ever been reliably clean and dry. he barely drinks (although conversely is willing to chug his water bottle if he outside and sweaty and noone tells him to) but generally i have the devil's own job getting him to drink. he regularly leaves his water bottle at home and isn't bothered by not having it.

the theory was (I think) that the desmo wasn't working because he was too deep a sleeper (he doesn't ever wake in the night), and so supposedly was weeing at a later point - presumably when the meds wore off? ie they don't stop you peeing all night, or somesuch... not really sure as the docs didn't seem too bothered that they didn't work... at the time i wasn't too bothered either - I knew he was a deep sleeper and had been through a similar thing with dd1 - we managed to get her dry at 8 using an alarm. To begin with it would wake us, and we would rouse her (deeply unpleasantly to make it not comfortable at all for her to be in a wet bed, lol) and she clicked on really fast and it literally took two weeks and she was done. So we sort of assumed it was a similar thing (desmo had no effect on her either) and that when he was a bit older, we would try the alarm with him.

It's one of the reasons I wanted to have another go with desmo, tbh, as it has become apparent over time that it's not an identikit situation.

(should add that dd2 - who we were told probably would be doubly incontinent due to her cp - was reliably dry day and night at 2. the child has never wet the bed ever. )