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If your dc had continence difficulties and an asc condition

(12 Posts)
guggenheim Sat 23-May-15 14:24:56

I wonder if you would mind sharing with me the kinds of things you found helpful?

I know that this is one place where people won't do the irritating breezy smile and suggest sodding chocolate buttons..

Ds is 5.5,he has no difficulty with understanding what to do or the order of toiletting,his issue is a refusal to try. I don't think he can reliably feel when a poo is coming and he is frightened of the school loos (can't blame him there)

We have some loo seat covers to help with sensory issues. I've bought him a pecs board where you add a card every loo visit because I think that this is partly where the problem is- he hasn't really made the link in his mind with going to the loo before needing to go,he leaves it to the last minute and then denies all knowledge of the accident in his pants!

Obviously I'd love to wave a magic wand and for him to not have this problem but it's complex because it's to do with the part of his body /mind/ emotions which don't work in a nt way.School are getting a bit tutty. We've seen gp- not v helpful.

What do you think?

bedelia Sat 23-May-15 14:41:22

Sorry I can't offer any particularly helpful advice, just beginning to solve some similar issues with DS2 (who's a little younger).

Have you been referred to continence clinic (or similar) yet? If not, perhaps GP could do a referral for you, or it may be that you can self-refer in your area.

The only suggestion I have for now which may possibly be of help is to try sitting DS on the loo at certain times of day with a "blowing" toy (think of those party blowing things which roll out) or some bubbles - Dr told us that blowing helps relax children so they're able to open their bowels more easily, might help DS to "go" more easily when its "convenient" rather than waiting until he's unable to hold it any longer.

One of the issues my youngest has is holding it in, as though the sensation of pooping (or letting go) causes him anxiety. He also doesn't like to stop activities to go to the toilet, so will hold himself until he has an accident. Does any of this sound familiar at all?

2boysnamedR Sat 23-May-15 16:41:19

I didn't realise my son had such complex needs so I potty trained him at 2.5. That was fun - not!

I am yet to train my younger ds so no words of advise. I did get referred quite easily to the countenance clinic ( eurenesis?) but unfortunately the paperwork all got lost on route. Ds wasn't dry at night but it's improved. Using the loo isn't a problem now, it's self hygiene. Sigh!

PolterGoose Sat 23-May-15 17:05:40

My ds had real problems recognising when he needed to go, and still, at nearly 12yo, has no idea a poo is coming until the very last minute, luckily he never needs to go at school. He was still only pooing in pants until nearly 6yo. With wees he's always struggled to recognise the sensation and for years we knew he needed a wee by his mood and demeanour and he needed instructing to go. Still at times I have to tell him to go now.

Working out timings helped a lot, I know that if he has a big drink he will be desperate for a wee after 40 minutes so I tell him to try after 35 minutes.

I always look for signs before suggesting he tries for a wee as trying to expel a small amount of wee doesn't help with learning the feel of a full bladder and can mess up signals. I use language like 'try for a wee' not 'go for a wee' to make it less of a demand.

These sort of problems are very common in kids with hypermobility/hypotonia and I believe that improving core strength can help.

youarekiddingme Sat 23-May-15 18:28:23

My DS is/was the same. His mostly came from the fact he suffers chronic constipation which affects the feeling in the bowel. Even now on medication he only knows he needs to go as he needs to go. I think some of it is related to hypotonia too.

I found with DS to start small. I just thought does it really matter if he sits on a toilet watching a you tube video if it gets him going? We had to work on the sitting and going so he knew what it felt like before we could get the going off his own back.

Also for poo holders blowing balloons is the key grin it relaxes the muscles that withhold the stool!

guggenheim Sat 23-May-15 19:11:59

Good advice all round - some of these we have tried before but it's well worth giving another go to.

We were referred to a specialist 18 mths ago but the gp said it was behavioural rather then physical and I'm ashamed to say that we didn't go. I was clueless and delusional I thought that the soiling was getting better. we had a course of movicol which didn't help to regulate unfortunately.

I DO need to watch my language,even though I know that telling him doesn't work I still do it.I think letting him play a game on the loo is a good idea- keeps him there long enough to relax.

it is all improving,unless he's tried or ill. The self hygiene needs to improve...

Thank you : )

youarekiddingme Sat 23-May-15 19:45:08

We don't even have self hygiene here and he's nearly 11! He's only just started wiping himself. My DS is a weird one! He'll happily wash hands when reminded but actually remembering to do it self directed - well.....

Bilberry Sat 23-May-15 21:00:20

I think sometimes it does just take time and persistence. My ds finally 'got it' at 5.6. Before that we had about a year of toilet timing (we were relatively accident free if we/school told him to try every two hours). I don't think there was anything more we could have been doing for him to get there any quicker. He just needed to work it out for himself which took rather longer than most. We still have the occasional accident.

If your ds finds the normal school toilets too scary, is there a disabled toilet he could use instead?

guggenheim Sun 24-May-15 20:14:21

Thank you. I have noticed some improvement in the past 2 days,he actually took himself off to the loo when we got in from a trip out today!!!!!!
He is at that magic 5.5 + stage where some of the nerves in the intestine should be fully formed,but who knows?

bilberry There is a disabled loo and I think that the OT is going to suggest exactly that in her report.I hope!

Thanks all smile

ouryve Tue 26-May-15 22:29:16

We didn't push DS1 to do anything more than a few wees a day on the loo until we were absolutely sure he was physiologically ready (waking up dry, most mornings) and determined that he wanted to do it. He was 7.5 at this point. We broke it down into tasks and he was rewarded handsomely for each task. Once he'd clearly masted something we moved on. We started with simply increasing the toilet visits and working on routine, so flushing, washing hands etc then had him pull up free for increasing lengths of time, on the understanding that he could ask for a nappy to poo. As his confidence increased, we rewarded doing a poo in the toilet (and wiping his bum, or asking someone else to help) and then, once that was much less intimidating to him, rewarded him for staying clean and dry through the day.

Then, once back at school, he was rewarded for continuing those good habits at school. It cost us a fortune in rewards.

Nights happened pretty effortlessly, the following summer. He was getting a new bed, so dared to go nappy free before it arrived.

MrsBobDylan Tue 26-May-15 23:40:04

My ds is the same age and still in nappies but at his sn school, they take him for a wee every 30 mins. When we get a loo downstairs I'm planning on doing the same thing (it takes me so bloody long to get him up stairs, it was time to try again by the time we'd come back down!).

He gets a marshmallow at school if he requests a wee, which he has now done twice, so that's a huge achievement for him.

Piratejones Wed 27-May-15 07:43:32

Like ouryve we've taken things very slowly. we are at a point now (At 7.5 years) where we use underpants in the day and nappies for bed and days out, still no bum wiping or anything.
So about what an average 3 year old can do.

I stopped the NHS nappies a few months ago as they were just building up.

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