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Annea

Embarrassing problem

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can i ask you all about somethign I have no idea how to deal with....

 

My 14yr old daughter diagnosed ASD has developed a very disturbing habit...

 

Recently, there was a terrible smell coming from my daighters room,,, it was worse than bed wetting 100 x.... took me ages to find the source as my daighter will not let me have muc access to her room... basically i found urine soaked towels shoved under her matress... it was like she had peed into them they were sodden.... I am talking two or three bath towels... it took me ages to get the room clean and the smell to go but this happens now about twice a week... I now check each day when she is not in her room.

 

thing is she will not tell me why.... she say she doesnt have any stinging or anything when she goes to pee so i dont think she has an infection but she refuses to tell me why she does it... she is fairly high functioning and whilst she has had episodes of smearing faeces in the past, she really hasnt had any similar problems. i just dont know wht to do.. as she smells and wont always shower, and i am worried that when she goes back to school she will become the focus of even more ridicule than she has now.

 

Has anyone else exerienced this or similar? any ideas of hat i should do? I have tried gently gently and each time she promises me it wont happen but this morning i got really mad as i could smell pee all through the house as soon as i got up. Thing is her room is really warm and so even one night under her bed the urine is stinking really bad.

 

sigh...

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Annea I am trying to come up with a rational reason for this behaviour because I always feel there is a reason behind all behaviours if we care to look. I am not going to try and look at this from a sexual perspective, e'g' related to physical development issues, period pains etc... as hopefully some more experienced (female) members might offer suggestions from this perspective Whilst the smell might be very disturbing for many does she get some comfort out of it?

 

It is obviously a pretty controled ritual from what you say not a case of bed wetting and trying to cover it up, rather I have read it as she is choosing to urinate onto a towel. That takes a level of effort about the same as going to the toilet in the middle of the night so I can't see it a lazy behaviour.

 

At a lesser level I have my favorite sweater which I wear to death and refuse to let my partner wash. I find the scent of myself on it comforting, this is a behaviour I have carried over from early childhood and havn't dropped even though I am now 47 and reasonably high functioning myself. One thought is that she is securing her imediate environments with smells as much as someone might do with favorite possesions. For some individuals sensetivity to smells are possibly very different to many people. I know that I used to drive home from university on a Friday afternoon and would look forward to an hours nap to recover from the drive, the thing I most looked forward to was not the feel of my own bed but the smell of my partner on the pillow and sheets.

 

Not sure this is of any help but it might get the ball rolling.

 

Best wishes.

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I saw ASD was featured on Embarrassing Bodies the other night and they seemed quite knowledgeable about it. They might be able to advise you from a medical-perspective/tell you how to deal with it.

 

Here's the link on how to get involved:

http://www.channel4e...rassing-bodies/

Edited by Mike_GX101

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Hi,

 

My brother used to pee on the floor and in a cupboard when he was a teenager, he said he didn't like using the toilet and said that it felt nice to pee elsewhere...

 

The thing is he only did it at night and I wonder if there was an element of not wanting to go to the bathroom in the dark - whether this was through fear or laziness I don't know.

 

He had problems with bed wetting too, so I don't know if he didn't feel he had time to get to the toilet when he woke up or not.

 

To me the use of a towel makes sense, they are used to dry things, they can be washed, and they can be hidden...

 

I wonder if there's a sensory thing to this too... my nephew used to love peeing in his nappy as a kid, used to grin like mad every time he wet it - until the pee went cold and then he'd cry - maybe a towel feels similar, cuz pee is warm to start off with...

 

Just a few speculative thoughts

 

Darkshine

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PS - my brother's room used to stink - but it's amazing how quickly you got used to it if you sat there for a while - so maybe she doesn't notice the smell if she's in there a lot - plus it's her own smell so it might be less strong or offensive to her - cuz my brother claimed to not notice any smell in his room even though it used to make everyone catch their breath when they went in there...

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Thanks all, It is only at night, although I myself have alwyas been scared of the dark so there is always a lamp on on the landing. Infact she always insists her door is closed as she cant fall to sleep if its light.

 

I am at a loss to be honest, she did wet the bed for many years but this behaviour stopped about 18 months ago, she also dribbled in the day too but doesnt any longer. She has had a problem with menstruation, as she is incredibly heavy, and has just started on the pill to help, I do sometimes step on used pads where she has forgotten to put it in the nappy bin (what we use for disposal) but this is soemthing we have chatted about, ie changing her pad only in the bathroom where the nappy bin is.

 

I do think she is unaware of the smell, as I sometimes have to tell her to wash her hands as she smells and she seems surprised.

 

last week we were on holiday and there were no incidents at all so i defintely think it is a habit, it was just frustrating... as five minutes before we left for holiday i found a towel under her bed so had to strip her bed, pull of the matress soak everything in febreze and put the washing on so that we wouldn't come back to the smell and within two days I am back to square one.

 

i lso feel very guilty as it really repulses me and whilst she is amazing, this behaviour alters my behaviour to her. She never cuddles me usually and when she does this is a precious moment for me, but recently i have found myself flinching becaue of the smell.... Does this make me a bad mum?? She already has very few friends and I am really worried about her getting called more names.

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just to add, the post above about the smell of yourself ont he sweater, my middle daughter age 16 who is apparently NT has had a baby quilt from her days in a cot, it has been washed only once and she sleeps with it every night as she says she likes the smell.....

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If she can cope with putting a used sanitary towel in the bin, maybe she could cope with putting the wee soaked towels into a bucket ?

 

Definately not ideal, and not a long term solution, but it might make it easier to clear up

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I think we do get used to the smells and it does us no harm to be told how we smell to other people. My partner often says I need to have a wash or change that T-shirt it stinks. In all honesty I can't smell it but choose the same clothes because they are soft as I hate anything just washed and ironed.

 

I am mature enough to understand that what she smells and thinks is what others would also think and so I try to remeber to make an effort. I think you need to explain to your daughter that what she experiences will often not be what you experience. This is one area which she needs to work on but thats what life is like for all of us a process of improving ourselves by working on our weaknesses.

 

I have always found that when people have been brutally honest with me I can understand their point of view, the ones I get anoyed with are the people who I suspect felt the same way and said nothing. Say the smell alters your behaviour to her and that is not what you want to happen. She might think 'so what' but at least she will be aware of your feelings.

 

Best Wishes.

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i used to have a 6 pint milk bottle that i used to call the ###### jug, sometimes i just diddnt feel like using the toilet, i found going to toilet somewere else was liberating. and i took satisifaction out of seeing the bottle fill to the brim.

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My first thoughts were that she is maybe frightened to use the loo during the night? Has she seen anything on telly recently that might have worried her or does she ever have nightmares or fears at night? I know you said she can't sleep with a light on, but it could be that she is fearful of crossing the landing at night or walking about the house in the dark maybe? I used to be convinced there was someone hiding under my bed during the night-time hours and used to run and jump onto my bed before they could grab my leg. I'm sure I got this horrible vision from something I'd seen on telly and it made me very fearful of walking about at night.

 

~ Mel ~

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I think that the cause lies in a problem with sensory integration, which is quite common on the autistic spectrum,and there exist therapies (to "integrate the senses").

Links to look up:

http://en.wikipedia.org/wiki/Sensory_integration

 

http://en.wikipedia.org/wiki/Sensory_integration_dysfunction

 

http://www.ncbi.nlm.nih.gov/pubmed/18947482

 

http://en.wikipedia.org/wiki/Nocturnal_enuresis#Primary_nocturnal_enuresis_.28PNE.29

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I've never gone to such lengths as your daughter but I do sometimes find it comfortable to sit on a towel at home with no underwear on. One of my homely comforts I'm afraid. When I do have periods, I tend to sit on a towel at home as the pads are irritable if worn all day (despite changing them).

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Thanks everyone,

lots of ideas.... not sure a chamber pot will work... she is a big girl and I think she might equate it to a potty....

 

I did ask her quite seriously if she did like the feeling of peeing into a cloth type thing and suggested adult diapers but she was appalled. I know she is ashamed of it, hence why she hides them, i have asked her to pop them staright into the washing machine... we had this arrangement when she wet the bed, she would just strip it eventually and put it in the wash put this seems like a horrible secret.

 

I will read the various links, and I think i will also get a specimen sent to the doc just in case it is something underlying. We have a light on the landing on all night but I might also put a plug in night light in her room.. she actually has her bed in a sensory space.... made from two huge built n cupboards knocked together, she has various lights etc in there but at night she likes it pitch dark and closes herself in with the remaining doors, so if I put a light in her room (outside of her bed space) it might make it less scary should she open the doors in the night needing to pee.

 

She is horrendously messy but this mornign she cleaned her room completely, sprayed all her carpets and matress with febreze and opened her wondows to let the air in so maybe my losing my temper and getting upset yesterday might have made her have a think about things... so hard when we want our children to be happy and keep hitting walls.

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It might be worth visiting the GP for them to do a urine test to make sure there is no infection.

 

Is she scared to go to the bathroom at night?

 

Is she waking up at night with an urgent need for the loo and does not think she will make it to the bathroom, and that is why she keeps the towels next to her bed?

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Hi, has she just started to do this since school broke up for the start of the holidays?........if she has there might be a connection.Could be that she is reverting back to some older type behaviours as she is giving herself a "holiday"...from keeping all the personal hygiene a priority.A bit like a worker who gets up really early every day for work...then they have 2 wks off and spend every morning of those 2 wks having a lie in till 11.00 am.An act of rebellion if you like, one that she may not even be aware of.She probably won,t feel as pressured to do all the personal hygeine stuff etc if shes not at school around her peers, so shes not worrying about herself smelling as much.

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