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Bed wetting
  • I am wondering if anyone has experience of this or perhaps any tips for us?

    My son has recently been diagnosed with ASD / PDA. Up until about 6 months ago we had no issues with bed wetting, he has been assessed and physically all is normal. His issue is, he refuses to drink all day. He knows this is something he can control, and there are days when he is particularly anxious that he will have a meltdown at the mere suggestion of having a drink (it doesn't matter in which way you ask / encourage the outcome is still the same). On good days we can get him to have a few sips, but nothing more.

    Just before bed he will either drink loads of squash, and even if we refuse this he will then drink water straight from the tap. This means that his bladder that has had no fluid all day, then becomes rapidly stretched and results in him wetting the bed.

    This has happened at least every night for 6 months, but he tends to wake the whole house when he is wet. He never talks about it, and if we introduce the subject to discuss then this will quickly lead to a meltdown.

    We have tried waking him when we go to bed, buying every flavour of squash, fancy new drinks bottles, giving him written / pictorial information on the importance of being hydrated, we have tried insisting, gently persuading, coaxing, offering rewards and giving him options (both encouraging him to drink) but nothing seems to help...

    Has anyone else been through this?

    Thank you for reading
  • Rubytuesday
    Posts: 289
    Hi, I’m afraid I don’t have experience of this exact situation, but my daughter does really struggle with recognising her body’s needs, and even when she does recognise them I think she views them as a demand... We’ve had some help from an OT with this which has been quite useful. Maybe worth exploring if possible for you.
  • emilisal
    Posts: 7
    Hello, I was so sorry to read of the difficulties your son is facing - it must be very distressing for you all.

    I wasn't sure how old your son is - I'm guessing 6 or 7ish? Mine started to struggle to drink but mainly in his teens, so that was perhaps a little different, but as Rubytuesday said, a lot of this is likely made worse by the fact that our children often struggle to sense when they are thirsty or dehydrated. Even now my son only realises he needs a drink when he gets a headache.

    I wondered whether you might try to increase fluid intake through ice lollies or slushies? and juicy fruits like grapes are also very helpful. Perhaps have an ice lolly yourself while you are together and saying how refreshing it is, rather than asking if he wants one...
    (Sounds like you know all the indirect stuff already though!)

    There's an app called 'Plant Nanny' which my son uses- you put in when you have a drink and it waters your plant which then grows, and it asks you to water it when you've not had anything for a while. As you aren't drinking for yourself, but as a game to keep your plant alive - this has been very helpful for him. It might be helpful later.

    I found it helped to put a drink in front of my son, without any comment, and then washing it up if he didn't have it and doing it again later. I also found that choice makes things harder, so sticking to a favourite squash might help.

    There is a useful explanation of the internal senses stuff - a bit near the top and a bit on p17, but this is work in schools which has been shown to help PDA kids, and I think it would need to be done differently if on a one-to-one basis... Might give you some ideas though

    https://mindfulbodyawareness.com/wp-content/uploads/2016/04/interoception_101_explan_track_activity.pdf

    The other thing I felt is that it is the hydration rather than the bed-wetting that is the real issue (although it wont feel like it now!) It may be that acceptance is the only route forwards for now - and by accepting it, and reducing anxiety and all direct mention of drinks it might allow things to change.

    If you can minimise the disruption of the bed-wetting so it is just dealt with quickly and back to bed, perhaps with empathetic comments in the day- 'gosh you must be tired this morning after having to get changed in the night' it might help reduce anxiety?
    ERIC is a charity and I think they might have some advice on pads etc? - you can get an alarm that wakes the child immediately, so that might reduce distress?

    The inability to talk about the issues without a meltdown occurring shows the huge anxiety he is feeling about it all. We have certainly found that when his general mood is better he drinks better, and when he's going through a particularly anxious time it reduces.

    I'm really sorry it is such a struggle and hope things improve.
    Take care.

  • HarHer
    Posts: 338
    Hi,

    Yes, we had this with both sons. It went on, intermittently, throughout childhood and well into their teens. With one son, the accidents were linked to his habit of drinking copious amounts of fluid (sugar free drinks) and his anxiety about getting up to go to the toilet (we tried night lights, but then he could not sleep because of the light). With the other, it was related to the depth at which he slept. He simply did not wake up to the urge to go to the loo.

    There may be some issues to do with interoception as well (or recognition of internal states).

    It has now largely subsided, although my youngest still will not put the light on to use the loo, which results in some near misses.

    Tale care.
  • Holly59
    Posts: 2,586
    https://www.amazon.co.uk/Toilet-Training-Autism-Spectrum-ASD/dp/184905603X/ref=sr_1_8?s=books&ie=UTF8&qid=1505841160&sr=1-8&keywords=toilet+training
    There’s a book listed on the recommended list by the PDA Society .
    Normally medication isn’t prescribed till 7 years of age . There are also specialist departments within hospitals who can offer support . Ask your GP for a referral . It’s a very common issue .
    Pat x
  • Hi thanks for all the responses, these are so helpful for me.

    My son is 9 (almost 10) so this advice is brilliant.

    I love this community and just how supportive everyone is
  • Holly59
    Posts: 2,586

    Hi thanks for all the responses, these are so helpful for me.

    My son is 9 (almost 10) so this advice is brilliant.

    I love this community and just how supportive everyone is



    https://www.autism.org.uk/about/health/toilet-training.aspx

    Support groups are listed on here plus the book the PDA Society recommends x

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