wet pants - any suggestions?

[Natterer]

My DD is 8 years old and has Asperger's.

 

Despite potty training really easily and not having any accidents for months (a year? maybe) at first, she lost the hang of it at pre-school and now wets her pants daily...and it's beginning to really do my head in! She does what she used to term, in the days she admitted it had happened, 'a little leak' (ie not a full bladder). Nowadays she will say imperiously "I don't know WHAT you mean, mother" when I suggest she needs to change her clothes or wash herself (and washing is another battle entirely). I'm pretty sure she DOES know when she is wet but just has her head in the sand and hopes no one else notices, or doesn't want to think about it herself.

 

She will refuse the toilet when it's suggested, only for a small damp patch to appear within a few minutes and then insist there is no damp patch. Not only does she generally smell like a neglected hamster's cage, I don't think this will help her fit in any better with the other children (especially at things like ballet classes, where they already shun her).

 

I've tried star charts, stickers, stickers to collect that lead to treats, praise for going, extra priviledges, getting cross with her for not going, loss of priviledges, ignoring it, making a fuss...you name it, I've tried it. With zero success.

 

She doesn't like the toilet, she never uses toilet paper or flushes after she's been ('luckily' number 2s are generally constipated ones and therefore need little wiping - yes I know this can affect eneuresis but...if i get them soft it's a whole new can of mucky worms, believe me, and seems to make little difference to the wetting habit) and can only go in the end cubicle in a public toilets (as long as they don't smell, in which case she won't go in there - despite being far smellier than the restroom, some days ) At school she has one cubicle she will use, unless it's dirty in there, in which case she will not go until the inevitable happens in her pants.

 

Does anyone have any experience with hypnosis? Could a hypnotherapist help her realise when she needs to go, in good time, and to take responsibility for it ~(ie try and clean herself up a bit) when she doesn't? Or any other suggestions? Not only am I desperate, my mother has started making noises about not wanting to go out with her which would be really really sad!

 

Thanks.

 

Natterer x

[Mandapanda]

Hi Natterer

 

These are the things which helped us:

 

Brand new toilet seat and Aw being the first to use it. This was the biggest breakthrough.

Wet wipes by the toilet.

His own towel to use in the toilet.

Liquid hand soap (he doesn't want to touch a bar of soap used by others).

Honestly, dealing with it in a matter of fact way (as far as your patience can go ), with quiet positive mutterings (I always found 'going on' about things just focussed on them more and made them worse). Plant little seeds in their mind and they will eventually grow.

 

We had tried everything too. Pooing was his biggest problem in the day (with constipation), and bed wetting at night.

 

It sounds like your daughter has a germ thing going on as my son did/does. Toilets elsewhere were a huge problem, and he used to hold on for days.

 

No idea about hypnotherapy - though did consider it for his anxieties.

 

Good luck <'>

[lsw146]

My DD had toileting issues especially at school because of teachers who would say to children they had to wait til break so she wouldn't ask. We arranged a hand signal which meant she could leave the classroom without having to speak and that helped.

Then in senior school she refused to use the toilets because there were anti smoking/cancer posters in there and kids smoking so she thought age would get cancer. We arranged access to the disabled toilet neat her form room so she felt in control which helped.

I hope you find solutions. My DD is now 16 and no longer wets but will hang on if she doesn't like the toilet environment.

[smiley1590]

how about using a reward /sticker chart ??? to praise when she does successfully not have a wetting accident in her knickers?

 

XKX

[Sally44]

How does your child seem to be coping with school generally, and also with any outside club activities you've organised? Does she want to go to ballet classes? Is her co-ordination good?

 

Constipation can be a result of anxiety and the hormones that stress response releases into the bloodstream.

 

Does your daughter have sensory difficulties at all. Does she fluctuate between being over and under sensitive. Can she actually feel when she needs the loo.

 

My son is toilet trained, and was initially out of nappies age 3, then was back in them for a bit, then needed them only at night. BUT even during the day he often is not aware that he is hot/cold, hungry/thirsty. Sometimes he sits down on the loo and when I ask him "why", he says "because I don't know if I want to do a wee or a poo. So if he cannot "feel" the sensation clearly enough to understand what he needs to do - then he isn't going to take the appropriate action.

 

My son also gets very focussed and engrossed in things and maybe totally unaware of bodily sensations. He can also get totally overwhelmed and overloaded, and again cannot process sensory information when like that.

 

But he isn't having the accidents that your child is. So, try to narrow down how and why it is happening.

 

Ask her specific questions, usually in the morning is better before they get involved in doing anything. Ask her "Can you feel when you need to go for a wee?" "Do you sometimes suddenly understand you need the toilet" "Does your brain get distracted with things you are doing and you cannot feel you need the toilet". But word it in the words and in ways that you think she will understand better.

 

You also mention she has problems with "smells", that is another sense. My son cannot cope with some smells, and talks of bad smells when we can't smell anything. He can also tolerate some smells that we would not like.

 

The senses involve seeing, hearing, smelling, tasting, touch, balance and co-ordination. And they need to correctly receive and interpret incoming sensory stimulus, integrate and process it and then make a response to that stimulus. If you don't feel like you need the loo, you won't go to the loo. If the smell in the toilets make you feel sick, dizzy, hyper, angry etc you are going to avoid the toilet. If you have problems with tolerating noise then the many hand-dryers blasting out make you feel like your brain is melting, you are going to avoid the toilets etc.

 

You say she has problems with washing. Can she tolerate water, showers, washing/cutting/combing hair and cutting nails etc. If she can't then she probably has Sensory Processing Disorder and she needs to be seen and assessed by an OT. Most, if not all people with autism have some degree of sensory processing difficulties ranging from mild to quite severe. It takes many forms and affects the individual differently, even from hour to hour because the processing and integration of the information fluctuates and changes.

[Natterer]

Thank you for all your kind words and helpful suggestions.

 

DD LOVES school and joining clubs, she'll join just about anything and her list of hobbies includes tae-kwondo, gymnastics, ballet, swimming, drama. She's not very co-ordinated (although she thinks she's brilliant at everything & I've not disabused her of this idea), and I think these all help with that. She does get upset if they, eg, swap literacy and maths lessons round or she has a different teacher or something, but that's understandable. She's in a mixed year group 3/4 and sits with year 4s which helps as they know she is younger and look after her. Next year the class structure is changing and she will be in 4/5, so it will be the same again. Academically, she breezes through.

 

She is prone to anxiety, which probably doesn't help the constipation, she usually goes regularly enough that we don't have to give medicine but it's always pretty firm (on the other hand, when I managed to get it a bit softer / more regular she had poo-ey pants all the time - she doesn't wipe with loo roll after using the loo, ever, says she doesn't know how but won't pay attention if you try and show her - and started wiping her bum with her bare hands and smearing it over the bath panel, sink, down herself, over the doors - you get the picture - so I am tempted to leave well alone there). But we do everything we can to lesson her anxieties and they're mostly worries like "eek! will I get to sit in the front of the car? Will my ice cream be bigger than my sisters, it has to be? will I get to go at the front of the line?" as she HAS to be first at everything, and we think she really does need to face this one out because she CAN'T always be first/best/biggest.

 

it's possible she doesn't know till the last minute when she needs the loo, although she won't countenance going 'just in case' so it's hard to know where to go with that one. I've tried talking to her about this, very gently, and so has my mum, about how it feels and whether she knows when she needs to go etc, and she won't talk about it at all and just clams up. She doesn't wet the bed, although she has from time to time in the past, she's not done that for 2 years or so.

 

She used to be AWFUL about bathing, hair washing and brushing etc but with patience and special bath foams that she likes the smell of is getting much better - she is learning to deal with it. I've/she's not washed her face, for example, for some years... but we're working on it. She also avoids tooth brushing Sally44, you mention seeing an OT - DD was diagnosed a month ago but I've not had the official version yet and am waiting for contact details and signposting, but will look into this when the info finally comes through (it was promised within a week of diagnosis and then, when I queried where it was after a fortnight, within a week of my query, but no sign yet).

 

I'm still wondering about hypnotism and will post back if I get anywhere with this. I guess I need to find a hypnotherapist who understands Asperger's first x

 

Natterer x

[Sally44]

Most people on the spectrum have sensory processing difficulties and they have a HUGE impact on how the person copes because it is about how information (and sensations) is perceived and processed by the body. If wiping your face feels like rubbing it with sandpaper you just won't do it will you. And on top of that your daughter will not know that other people don't feel things like she does.

If you are bad at understanding where your body parts are (proprioception), your co-ordination will be poor. But this may also affect your ability to sense direction and may become lost and anxious very easily (no mind map of whereabouts they are). They may be afraid if their feet leave the group, or maybe unable to climb a tree or over a gate or tie their shoelaces or ride a bike or brush their teeth because of the motor planning element needed.

 

It's great that you found some ways of getting her to take a bath.

 

My son wasn't great a wiping. We used wet wipes and he was alot better at it. But he doesn't seem to know when he's wiped enough. He can get through a whole roll in one sitting!

 

For your daughter to be seen by an OT you need to get the paediatrician that diagnosed her to refer you to the Occupational Therapist. They may try to fob you off by saying it is a long wait - and it is. We waited 2 years. BUT they can help alot with a sensory diet, sensory modulation and regulation in school/home, adaptions and gadgets to help with writing, fidgeting, calming etc.

 

Always needing to be the winner, first, best etc is very common. My son cannot handle losing. He does not seem to understand that people do hobbies and clubs because they enjoy it, not because they want to be the best. And TBH, we do stuff we are not particularly good at for the social side of things. If that is not something you are interested in, then the whole point of going is about being good at it.

 

It is also about a predictable outcome. Doing something and winning and being first, the best is something they understand. But what happens if they don't win, or are not first, what do they say/do then? What does losing mean about them? This all needs explaining either in words, pictures, cartoon characters and think bubbles. Point out when someone else loses and what they say or do. Talk about things she is good at, try not to over exaggerate or say she is good at something she isn't because she may take it literally and it will be very confusing if she eventually figures out she isn't very good and then thinks mum lied.

 

Children can very quickly label themselves as rubbish, stupid a loser etc because they do at some point, recognise that they are not very good at many things. Thankfully for you your child is doing okay academically. But for my son he can see that he can't read or write and his classmates can. He can see them playing football and knows that he can't do it. He sees them riding a bike, climbing trees etc etc. Yet he is bright and it is so frustrating for him.

[focusfuture]

No relevant experience etc, but is it worth getting her checked for a urinary tract infection? If she is leaking, but not full wetting, perhaps this might be a problem, also if she's holding for a long time, that might cause it too.

 

A random thing, I found, my nephew experienced deep anxiety, not ASD but we found that when he was young, singing helped him to take his mind off things, and so poo's were easier, he suffered with terrible constipation and a sort of phobia about going to the toilet after his delightful mother told him he was dirty and stank. Thankfully she has left now, so he's struggled with it, but coping much better now, a few years on.

 

Both hand signals and disabled toilet are really helpful ideas, amongst all the wisdom here!

[baileyj]

My son, now 10, wouldn't wipe his bottom, he was terrified of getting anything on his hands, so not the same issues, a clean thing. The paediatrician suggested disposable gloves, we tried it, and its worked. We keep 2 boxes of disposable gloves next to the loo,and a bin, so he knows there are plenty (200) there, he goes for a no. 2, pops his gloves on, uses wet wipes, and then pops the gloves into the bin. Not sure if it will help, but may be worth a try. Really wish you luck.

 

Jo

[Natterer]

Thanks for your suggestions.

 

My mum is always laughing at me for trying something new on this one ! I'm the queen of bathroom innovations! i've bought wet wipes (don't like the wet feel on our hands) and rubber gloves (used them once under protest, despite insisting i bought them). New toilet seats - check, we've had 3. I've bought books especially for children (well teens really but she's a good reader) with special needs to explain about personal hygiene. She's read them, but doesn't think they're anything to do with her. She was checked for UTIs right back when this all started (after a high temperature thingy, which does make me wonder about PANDAs? or is that too controversial?) anyway they said she had no bacteria IN her urine but lots AROUND the vagina (not surprising given that she sits in wet pants most of the time and sometimes they're a bit poo-ey as well). No prescription, just told to wash her more often. She has suffered from external thrush a lot, but that's not surprising really as her skin is often red and sore, sometimes broken, from the ammonia. HATES having thrush cream applied, though, and will do anything to avoid it. I buy buckets of the stuff. Now she's getting older it's getting harder to insist on these things though; she's more able to physically resist and I feel it's more undignified for an 8 year old to be forcibly applied with cream on the tush than a 3 year old. So that means a LOT of reasoning.

 

I have started mentioning to DD that I can smell her - not nastily, just matter of fact - as she doesn't seem to connect the leaking with the obvious outcome. i'm still not certain she knows she has leaked. She might, but then again, she might not. She huffs a bit when I say this but I think she needs to know that other people are aware of her bodily emissions.

 

I honestly wouldn't have asked about the hypnotist if I didn't feel like we'd tried most other things.

 

What is an occupational therapist likely to offer in the way of ideas?

 

Cheers.

 

Natterer x

[Sally44]

Oh dear, that all sounds very uncomfortable and painful.

 

But if she is totally unaware of that, ie. does not feel uncomfortable and does not feel the pain of her very sore personal bits, then it is reasonable to consider that she may not be processing certain sensory information.

If she is not getting information from her sensory system it is the same outcome as someone that is blind or deaf. You could not ask a deaf person about "sound" because they do not process it. So no matter what you said to them eg. "lets move to a quieter area because it is very noisy here" would get no response or change their behaviour because they do not hear anything to link to what you are saying.

 

What an OT should do about this is assess for sensory integration disorder (and the lack of sensory integration will also mean that she will not link or connect things because she does not experience or process them together and therefore is not making the obvious links you are trying to point out to her.

 

What she may benefit from is a sensory diet and sensory integration programme. NHS OT's maybe able to provide a sensory diet, but they do not commission (ie. provide) sensory integration therapy because it is too costly. BUT if she has SID she should receive the appropriate therapy. But that would involve getting that need/diagnosis into her Statement, and you would definately end up at an Educational Tribunal to get a SID programme in part 3 of the Statement.

 

You can pay for an independent OT to assess and provide a SID programme. It is worth getting her referred to the NHS OT service. And it maybe useful (if you can afford it), to speak to an independent OT about her difficulties.

 

If you are in the Statementing process, or have a Statement with a forthcoming Annual Review, then you need to time any assessments so that they are most useful to you to be able to submit as an additional need/difficulty/diagnosis that your child has.

 

If you do decide to try hypnotherapy it would be interesting to find out what improvement, if any, there is. And how would you find a therapist experienced in working with SEN children?