HF ASD and soiling

[WorkingClassHeroine]

Hi I haven't posted here before but I'm hoping to hear some happy stories about this issue because I been past breaking point several times and I don't know how much more I can take

DS2 is 5 and was diagnosed with high functioning autism in July. He has never been able to keep his pants clean except for the odd day here and there, and then only because he hasn't had a bm at all that day.

He was resistant to toilet training from the start and although he is great for weeing appropriately he has a history of withholding and constipation and has been on various doses of movicol for over 2 years.

I've finally managed to be signposted to school nurses and they will refer to continence team (I didn't even know there was such a team). So I'd like to know what to expect from them. I'm not sure what they can do, as he either doesn't know when he needs to go or just doesn't care/doesn't want to interrupt what he's doing to go to the toilet.

I'd also appreciate some tips on how to talk to the hcps about this without dissolving into a teary, snotty mess!

Thanks for reading x

[notsoyoungnstupid]

Hi my DD is 8 now, and is only just being assessed for Aspergers but her initial contact with CAMHS/paediatrician was because of withholding and soiling - she also used to wet herself and still has problems with wetting the bed (though it's much better than it used to be). My experience of the bladder and bowel clinic in Lambeth is that they were really helpful. We've been going for four years now, on and off, and things improved drastically after they helped initially with the soiling. We found a poo routine really helped (it's 6 o'clock, time to sit on the loo for 20 minutes with stories and balloons! What fun!) along with lots of movicol, poo characterisation & stories (do you know sneaky poo? We also invented angry poo, lost poo and sad poo who all needed to get out and go down the whirlpool to their families in poo land). At the time I felt I was going mad and it seemed to take forever but I started a help thread on here and lots of people posted (as in general any mention of it in the real world would solicit looks of horror and changes in conversation from other mum associates). Good luck. You aren't alone and I'm glad to say the days of '6 changes of underwear and a bag full of soiled clothes' are well behind us, it will get better and you should get some proper help and support. Xx
Ps on the teary snotty mess front, I either make like a conservative MP and stick to facts and figures while maintaining complete composure and denying any emotion (like I am talking about the abstract concept of a child, rather than an actual child I might be remotely interested in) or I just cry and snot everywhere then try and make a joke afterwards while not beating myself up about the fact I actually love my child and have emotions about her problems. With practice I'm getting better at judging when to employ these two mother personas. The joy.

[WorkingClassHeroine]

Hi notso. Thanks for replying (I was getting used to seeing the tumbleweed on this thread!).

Really good to hear things are improving for your DD. I've started a routine of 'check and try' after meals - that's check pants and try for a poo. I think that his 1 to 1 help at school also has a routine of sitting on the toilet after lunch. This sometimes works but we still have a lot of days with a teeny little smear (which I don't get too worked up about as it's nothing to how it was) and other days (like Tuesday) when school call me to take him home and wash him and provide some extra trousers. Every day is a little different.

I have heard about poo land and will look into it again. I found that he was only willing to do the 'check and try' stuff once I'd found a YouTube vid to show him - like many HF ASD folk he is very good at conversation and seems to understand the words you use to explain, but can't seem to put it into practice without some visual aid as well.

I like the sound of being a politician and trying to be a bit detached in order to maintain composure - I don't like to show weakness, which is a bit of a stupid thing to say because feeling emotions about our babies' problems is not weak at all! Failing that I might just tell myself that a few tears from a parent is part of the job of the HCP and they will have seen it all before.

And although it's sad to know that there are many other families in the same boat, it's also (selfishly?) reassuring to know we aren't alone - having a child with issues of any kind can be a very lonely place.

Thanks again and good luck to you and your DD for the future

[notsoyoungnstupid]

Hello WCH thanks for the support, it can feel lonely out here, but I thought you might like this ancient zombie thread from 4 years ago
www.mumsnet.com/Talk/potty_training/1270285-arghhh-how-long-can-this-go-on-extended-potty-training-support-thread

Many hugs and snot and tissues
Xxx

[vickibee]

my son had similar issues, wore night pants up until age 9, finally became dry at night this summer although he may have an occasional accident, also HFA. I think you have to wait for them to do it for themselves - you can't rush them

[WorkingClassHeroine]

Hi vickibee thanks for your reply. I kind of agree that it will happen when it happens, I'm just hoping to understand more about what I can do to help him. I do try to remember that he (probably, hopefully) won't still struggle with this when he's grown up!

Thanks for the link notso, I'll have a look-see.

[vickibee]

saying that he had an accident last night, I blame his dad for bringing home a great big bottle of coca cola. I do limit what he drinks after tea. Unlike dad who doesn't get up at 4am to clean bedding :(