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sheuk

I feel a fake

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Hello, I'm new to this and a single mum, my son has recently been diagnosed with aspergers (he's 9 ), I always knew he was different and that situtations needed to be dealt with in different ways, for example when speaking to him everything needs to be precise because he takes things literally and of course he has all the other traits that I now know are attritubuted to aspergers, my only real worry with him is his inability to mix with his peers and his constant unhappiness, I have 4 older sons and each and everyone are different so I just figured it was just ''his way'' but now he has been labelled with aspergers I'm not sure what to do....

He has another problem which is ongoing, he has nocturnal enuresis (currently attending a clinic for this), I was wondering if this was common to aspergers?

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Hi Sheuk and welcome to the forum :thumbs:

 

Nocturnal enuresis is certainly not unheard of in Autistic Spectrum Disorders as well as many other groups. I'm not sure how common or not it is within the Autistic Spectrum particularly. Best wishes to your son regarding this.

 

Myself and my two children are all on the Autistic Spectrum.

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Hi all just found this site again, I have an 11 year old with Aspergers diagnosed at three and a half, came back to research for a family member whos child looks like they may be aspergers as well though this is unconfirmed as trying to fight for a DX.

 

 

He has another problem which is ongoing, he has nocturnal enuresis (currently attending a clinic for this), I was wondering if this was common to aspergers?

 

My son has nocturnal enuresis he is now 11 he has never been dry at night and we are still are trying to deal with this problem he has had the usual routine visits from the school nurse attended incontinance specialist appointments. He has used desmopressin (nasal and oral for over a year) though currently he does not take anything because I really could not see any difference when he was using the medication which they said would stop him from wetting so I have chose for now to take him off the medication.

 

We follow all advice given , at least 7 drinks a day last one an hour before bedtime, toilet bed toilet before sleep.

 

From what I have read and been told it is a very common problem with Aspies, My son feels he is too old for star charts etc, to be honest that way of thinking never did my son any good just encouragements and lots of well dones when a dry night is achieved, When the nurse tried to suggest a star chart he kinda looked at her in a way that said look I know I wet I can't help it, I go to the toilet and follow your instructions I am trying and no amount of stars are going to sort this out for me which kinda made me smile.

 

He is very open about his problem and will talk openly about it around proffesionals etc for me my experience is what I have learned from my son please don't treat me like a baby.

 

I was told by the incontiance specialist that people with aspergers don't have a part of the brain that releases certain chemicals that suggest they need to go to the toilet, how true this is I don't know as advice changes from specialist to specialist etc.

 

But anyways thought I would chip in.

 

Chin up

Edited by dixie

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Hi all just found this site again, I have an 11 year old with Aspergers diagnosed at three and a half, came back to research for a family member whos child looks like they may be aspergers as well though this is unconfirmed as trying to fight for a DX.

 

 

 

 

My son has nocturnal enuresis he is now 11 he has never been dry at night and we are still are trying to deal with this problem he has had the usual routine visits from the school nurse attended incontinance specialist appointments. He has used desmopressin (nasal and oral for over a year) though currently he does not take anything because I really could not see any difference when he was using the medication which they said would stop him from wetting so I have chose for now to take him off the medication.

 

We follow all advice given , at least 7 drinks a day last one an hour before bedtime, toilet bed toilet before sleep.

 

From what I have read and been told it is a very common problem with Aspies, My son feels he is too old for star charts etc, to be honest that way of thinking never did my son any good just encouragements and lots of well dones when a dry night is achieved, When the nurse tried to suggest a star chart he kinda looked at her in a way that said look I know I wet I can't help it, I go to the toilet and follow your instructions I am trying and no amount of stars are going to sort this out for me which kinda made me smile.

 

He is very open about his problem and will talk openly about it around proffesionals etc for me my experience is what I have learned from my son please don't treat me like a baby.

 

I was told by the incontiance specialist that people with aspergers don't have a part of the brain that releases certain chemicals that suggest they need to go to the toilet, how true this is I don't know as advice changes from specialist to specialist etc.

 

But anyways thought I would chip in.

 

Chin up

 

 

Hi Dixie, I am so glad you replied I could have cried when I read your message, every other aspect of my sons aspergers I can cope with but when it comes to this..... I'm just completly in the dark, I thought he was the only one who had this problem and that maybe it wasn't related to his aspergers at all, the last time we went to the clinic they suggested he might have a sensitive bladder so Im having to scan every drink he has to make sure there's no citric acid in it, out goes orange juice, any sort of squash or fizzy drink but it's having no effect at all, can I ask, how do you cope with the wash load? I mean, every day I'm washing his duvet, pj's and sheet, it's costing me a fortune especially when the weather will not permit me to dry on the washing line and I have to use the dryer

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Hello again Sheuk,

 

I do agree that this can be very difficult to deal with on all levels, For his bedding I basically deal with a 3 step method, so three of everthing (all except the quilt, Argos do quilt sheet and pillow plastic protectors) One in the wash one drying and one on the bed. I use Freecycle for beds as you can imagine he can go through quite alot of mattresses because of smell problems etc, obviously I bleach and disinfect it but eventually its time for a new one. Family fund came to my rescue when my washer stopped working and they sorted me another out very quick.

 

My son does drink squash occasionally but his preference is plain water of fizzy water. I also have followed the advice you were given on not giving him acidy cordials etc. Each to there own but made no difference with my son whatsever.

 

I guess what I have found difficult to cope with is the varying advice out there, our district health nurse had him in large adult size nappys till Eight years old, then we saw the Incontinance specialist who took him out of the Nappys. Then they passed us to his school nurse, we have had a bed alarm which did no good whatsover again just caused terror My son has always had a problem with the Loud noises so imagine being waken up in the middle of the night an alarm going off it petrified him each night in the end he was scared to put the alarm on.

 

So then we moved onto the medication again no effect, school nurse came to conclusion could not really help us anymore as we were complying with all advice and still no change and she did not know what else to do so has left us to our own devices.

 

What was also annyoing was being told by DLA I should be lifting my son at night to go to the toilet when his Incontinance, health visitor/nurse School nurse all said that was the worst thing I could do as he would not be going to the toilet when he needs to go or his body tells him to go he would be going when I told him to go if you get my drift. The lovely worded letter I received from the DLA told me basically I was not doing my job correctly as a mother by not lifting him to go to the toilet in his sleep like anybody elses child. I had tryed that in the beginning but stopped when I got the correct advice.

 

I also struggle to deal with attitudes to his problem, My sons Father I am divorced from and I am remarried His father currently lives with his girlfriend in her house. My son sees his dad every other weekend his sister is allowed to Sleep at there house my son did sleep there but I found out that my ex husband was secretly putting Nappies back on my son when I had removed them for a year because his girlfriend did not want her expensive sheets ruining so basically I stopped my son from staying over and now he stays with his grandmother when he has access to him.

 

I have also had my mothers Sister-in-law, when she found out that my son was in nappys tell my mother to take my child for a month and get him out of Nappys behind my back. How dare anybody interefere in something medical with my child.

I wanted to give this woman all the literature on the subject of nocturnal enuresis and aspergers and gain Knowledge before she passed judgement on the whys and wherefores that my son was in nappys till 8 she also thinks I am making it up about his Aspergers. My mother would not let me speak to her on it so again for fear of reprecussions I suppose. Again I felt deflated and attacked.

 

I am due to go on holiday to Greece so in that instance I take two Bed protectors the fabric kind with the plastic backing and I change the bedding in the hotel room for one of them and I wash in the shower each time he wets, it can sometimes be quite hard to hand wash sheets in a shower wringing them out is a nightmare with no washing machine etc and drying them on the balcony but hey ho.

 

To Finish off nothing has changed and I just deal with the bedding everyday I have been doing it for that long now it just feel its as part of life as making my familys tea etc, My son is a adorable character who has took this problem in his stride and all credit to him, he is mature in his attitude to his problem and to his Aspergers for that matter I don't mean to and I hope I have not disheartened you as every child is different as you know.

 

Sorry for the long post got carried away with my own thoughts whilst typing and did not realise how much I had typed.

 

Take care

 

Dix

Edited by dixie

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Hi, We've got this problem as well, but G is still only 5, so I'm keeping my finger's crossed ( although he seems to be getting worse, not better!).

For the DLA's information, 'lifting' is not always a good answer. We've been doing this for about 8 months, after a period of wet beds every night for 4-5 months (after a period of mostly dry beds for about a year!!!). Recently, he's been wetting the bed as well as being lifted, so it seems to be making the problem worse, not better! Now, we have the problem of him needing two wees in the night, and how to deal with that! :wallbash:

 

I have quite a complicated system of sheets on the bed, to cut down on washing and time taken to change the beds. I'll try to explain...

1. A very good quality, non-rustly waterproof mattress protector.

2. A cotton fitted sheet...we have 3 of these, as Dixie says.

3. A large, washable, fabric bed mat strategically placed (fantastic product-organic and no plastic, so not sweaty-G has horrendous night sweats as well!!-bought from a web site run by The Lady who sells Nappies, if you know who I mean!). This dries in no time over a radiator or the banister even if there's no heating on!

4. A cot-bed sized sheet turned sideways and tucked in over the top of the bedmat. This is the 'drawsheet'.

5. A fantastic duvet bought for a very good price from a bargain supermarket who's name rhymes with 'fiddles'. Unfortunately, they don't sell them at the moment, but when they do, I'm buying more. It's really soft, thin but warm, with a grey check woven into the cover. This grey thread is made of carbon, and stops smells!! Perfic! This too dries in no time-it's almost dry when you take it out of the washer! Really important for us, as G tucks the duvet in between his legs, then wees into it! Nice!

6. White cotton cover on duvet-no frills, and not ironed...3 of these as well.

 

When G wets the bed, usually the only thing we have to do is strip off the drawsheet and bed mat and bung them in the wash, then replace.

 

On holiday, I take a supply of drawsheets (old cot sheets again, or you could buy some cheap cotton flat sheets and cut them in half and hem them), and the extortionately expensive disposable bedmats. In a hot country, I would not use the hotel duvet, but take a couple of fleece blankets as covers-these wash and dry really quickly and easily.

 

One more tip... 'Fiddles' sells disposable 'changing mats' that are just a bit smaller than the expensive 'bed mats', but just as effective. They sell them with the baby creams and stuff.They are much better quality than the cheaper bed mats made by our favourite high street chemist, which tend to ruche up and go all bitty if used for more than a couple of night and not thrown away (he doesn't wee every night!).

 

For what it's worth, I don't think star charts are the answer, as they wee when they're asleep, so can't control it. If rewards work for thing we can't control, I'd be able to stop my DH snoring by giving him a sausage butty for breakfast every night he didn't wake me up with his sonorous sounds!!! :lol:

 

I try to be very matter of fact about wet beds, just treat it as another thing that needs to go in the wash. I do try to involve G in changing the bed, etc, and he will now pull the covers off the wet sheet, take off his PJs and put them all in the middle of the wet sheet ready for stripping. :thumbs:

 

Hope this helps! >:D<<'>

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Hi i cant believe it!! another similarity !! its not just me!!! my son is nearly 14, hes had this wetting problem since he was 7 tried everything , he even sked me to buy him a spongebob quilt cover because it was a sponge and it would mop up the wet!!! was really upset when it didnt help, he tried the alarms but as they only wake him up when he starts to wet he blamed them for the bed being wet now we have learned to live with it, we ignore it, what else can we do? but i never knew it could be part of aspergers, im still trying to get a diagnosis, we p[raise when he is dry and we take incontinance pants on holiday we tell him they are special sleep pants and not nappies and they are so he can relax while hes on holiday and not be embarrassed, he still believes they stop him wetting because they absorb he says hes not wet. If you get dla you can get payments from the family fund for help with bedding and mattresses and even washing machines family fund.org look it up, after 5 years of wetting i found out you can not only get quilt and pillow protectors you can get waterproof mattresses starting at about £90 although i didnt find that one strong enough for my son ,he needed a firmer one which was £140 its a real bonus, if you are on benefit maybe if a dr reccomended it you might be able to get help to buy it from elsewhere im not sure, but i felt it was a similar price to a normal mattress, if you search the net you will find a few places that do them and u dont need a crinkly cover on them either. we ddi find the suopper and last drink one hour before bed time worked the best out of everything but still not all the time, i was told dont restrict drinks during the day becasue the bladder needs to get used to holding it in, if iy doesnt have much in then it will only get used to holding small amounts, hope some of that helps x

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Hi all. Have had this problem with DS who is now 13. He is now on Desmotabs - 2 per night and has been dry now for a couple of months. However, he could still wet during the day if not reminded to go to the bathroom. We used pull-ups which go up to age 15 as I could not put up with constantly changing beds. If we go on holiday we take a supply just in case the meds stop working.

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We use washable protective mats that tuck under the mattress each side at work, called Kylies, and you can get really huge ones and they are very good. I did look at them when my dad was very ill at the end of his life, but they are extremely expensive, and obviously you would need more than one. I don't know whether you're entitled to any help from OT with things like that.

 

Bid :)

Edited by bid

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I used to wet the bed until I was about 9ish, Mum did try one of the alarm beds, but I think it actually went off every time I turned over.... SO that got chucked out quite quickly. I was ok about nappies at night though.

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My son is 8 and although he doesn't wet the bed every night, it happens at least once a week. There seems to be no reason why he is dry for a couple of nights then wets the bed two nights running etc. Same advice as above really regarding mattress protectors etc.

If it was happening every night I would probably consider putting something like dry nites back on him. I know that professionals don't like that, but I don't really know what their problem is. If they cannot help it and nothing is working then, to me, dry nites sounds better than constant washing and drying.

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