Pee & poo accidents - are we the only ones?

[eskimomama]

DD is 6.5, has non verbal autism. She was perfectly potty trained at age 4. We waited until she seemed ready and it was very quick to potty train her. She seemed to understand perfectly that you can't have accidents in your knickers anymore. Zero accidents in about 1.5 year.

Last summer, when she was 5.5, she had an impacted colon, which meant a lot of small poo accidents that she couldn't control (small, hard poos - sorry for TMI). We treated her with laxatives and then plenty of toilet training again but poo accidents have been happening almost daily since then. It's been almost a year. I know for sure she isn't constipated anymore.
And now pee accident (about 10% of the time which is still too much, especially in bed).

I tried everything from behind angry, cold showers on her bum every time there is a poo accident, from making her watch me clean it all up and obviously talking to her in a very simple way so she could understand... Nothing is working. She knows it's bad and will hide when she has had an accident. But at the same time she will start laughing when I clean her. I think the laughing is a self defense mechanism to kind of escape the problem and hopefully make me laugh too...(??).
I can't watch her non stop all day long - even though it's the only thing that seems to work... DH got upset at her in January and since then she refuses to go to the loo with him.

I'm so, so so tired of this. It's driving me nuts, I can't speak to anyone about this, and it's totally unhygienic. She is starting a new school in September where this simply CANNOT happen.

I don't know if it's a new "control" problem (don't think so) or she has unlearned that poo & pee accidents are bad, and that I'll just clean it all up anyway. Again, she isn't constipated (GP checked her bowels and she poos 2 or 3 times every day).

Are we the only ones in that situation??
Do you have suggestions?? She is non verbal with limited understanding, so I can't use reward systems.

Why can't you use a reward system, if you are using a punishment system?

Punishment (cold showers) didn't work at all, so I'm not doing it anymore. She thought it was just cruelty... But I'm still getting angry every time as it's something that deserves being angry about every time - I think...as she CAN poo in the toilet at times. (I'm extremely rarely angry otherwise).

I think the reward system is just something else - she doesn't grasp the concept yet in other situations (ie "you can have chocolate after you do xyz"). Time and rewards are 2 things that she has issues with. Things must be immediate or she loses the meaning.

Thanks Poltergoose I feel awful when I punish her, it's totally not me too. If you knew me you'd say I'm even too kind in general. I'm not doing cold showers anymore but I keep being angry... as she does know how to go to the loo at times. Is this still wrong?

I'm unsure about nappies... will it not make it harder? She was potty trained much quicker at 4 after we removed the nappies because she thought pooing in nappies was ok but in knickers it wasn't.

I'll look up the ERIC website. Thanks.

Punishment ie cold showers, you getting angry, Has worked, she hides! And tries to make you laugh and happy.

She obviously likes it when you are happy. Make the reward immediate, when she gets it right.

As you say getting angry is not working (in fact it's probably making it worse)

While she was constipated, it probably hurt to go, gave her tummy ache etc, etc. All very negative for her. You need to make it a more postive experience again.

As polter says get it checked out again by paed too

I haven't had this exact experience with DS, but I recognise the behaviour - DS will do something that gets a big reaction, and thereafter will forever try to repeat that moment, even when it no longer makes sense or gets the same reaction. It's almost as if it has become a reflex and he can't stop. So I love Polter's suggestion of starting over again, as maybe it will reset that habit. good luck!

Thanks all - You are right about the pointlessness of getting angry, and again it's crazy I'm describing myself as a punishing mom as I've been everything but that since DD was born, endless patience with all her difficult sleep/food/sensory issues and her ASD advocate to everyone around us.

At the same time, I didn't want to treat everything through the autism lense, I think it's also OK to get mad at an ASD child at times, if they've done something wrong and don't care about it. And I never got mad at her when she had an impacted colon as I knew she was unwell and couldn't control her bowels. We did plenty of massages and talking nicely to explain what was wrong and that it wasn't her fault. Then she was good at toilet training again for a while, then bad, sometimes repeatedly throughout the same day, laughing about it, ignoring my patient talking. The laughing looked to me like she didn't particularly care that it was wrong or disgusting. She was unfazed. It was becoming the new normal. So basically the patient method wasn't even working and I became worried that she didn't care anymore about pooing in her panties. And all along she could control her pee just fine (until now). Getting angry at her was to make her understand that it was wrong to poo in her pants - "poo is only in the toilet DD, look at what mommy has to clean up now, for the 3rd time today, it's not good DD". And it kind of worked for while, she was rushing to the toilet or taking me there.

Yes I admit I did lose my patience stupidly but I don't think I over reacted either. Not looking for approval or anything, but do you SN moms never lose your patience about anything?
It's just difficult to know how to tackle the problem, not knowing if she can't control herself quickly enough to avoid an accident or if she has unlearned that pooing in the panties is wrong. I'll book an appt for a bowel examination.

Sorry I didn't mean to sound defensive. I felt like I hadn't explained the situation properly but I made it worse ;) The stupid cold shower idea came from another SN board from moms who had used it successfully... didn't work at all for DD and I didn't try for long.

she poos 2 or 3 times every day

She is pooing 3 times a day, doesn't this raise alarm bells that it's something wrong rather than something she can help?

Impacted colon might have left some damage or be happening again. Rule out medical causes.

If your dd is sensory, 8th sense is ' interoception'. It transmits internal sensory message e.g. hunger and the need for the toilet. This sense can be disrupted when there are other sensory processing issues.

I def believe she has too many BMs every day. GP/consultants think it's normal as the poo is normal now, abdomen is fine too (I make him check it every time we go). I do believe claw12 that it has left some damage too, even "just psychological" ie sensory. Your point about interoception makes complete sense.
We've had plenty of assessments (stool analysis etc.) and nothing was found, apart from a clostridia gut infection (treated with antibiotics) and intestinal yeast (recurrent candida) but both are under control now. She has progressed in other areas but regressed there. From what I found online potty training regression can happen 2 or 3 times before the child is 6-7.

Sounds like your dd has had a real tough time, compacted colon must have been very painful, then infections etc. No wonder she has regressed.

So many different factors can impact on toileting. My Ds is almost a teenager, he still has 'accidents'. It's just something we deal with, it's not a big deal.

On the medical side.

Did she ever use movicol to keep the stool soft and give her bowel and colon a chance to shrink back to its normal size and gain it's elasticity again? It's a total myth opening your bowels 2/3/4 times a day means you aren't constipated.
And also a stretched colon changes the ability to know you need to go. The nerves are often affected.

It's also very common if you do have some impacted stool (so some hard stool that hasn't moved but other stool is passing) to then lose some control of your bladder.

My DS wets the bed still when impacted (he's nearly 12) and it's usually our first sign he needs movicol increased. He goes daily because he's on movicol but still gets impacted occasionally.

Where in the world are you OP?

jasonandyawegunorts I'm in France

claw12 and youarenotkiddingme I know exactly what you mean about the whole fecal impaction story - esp. about the colon needing time to shrink back to normal. It takes so much time doesn't it? We didn't use Movicol (although I had bought it from the pharmacy in advance, but the GP wasn't keen, I can't remember why). The GP prescribed Babylax instead, a baby enema that worked really well , followed by daily doses of Transilane (that's a fiber husk powder that dissolves in a drink, to prevent constipation to happen again - all naturally). It helped a lot, but we kept watching for signs of constipation for months. Also used lots of probiotics. Her poo was pretty much perfect all of the time (after years of horrible stools, so I know my stuff about stool perfection!). Every time the GP examined her since she had empty bowels.
It happened during the summer last year (maybe due to mild dehydration? lack of fiber?), so I will be more vigilant.
Still it's a bit abnormal to have so many "perfect" stools everyday.

Hi OP. You asked earlier if anyone loses their patience. I absolutely do and then sometimes feel terrible afterwards. I've forced my son into a bathroom screaming because of the hand drier once. Yes it's terrible but we all make mistakes and can't keep calm all the time. Just tonight I told him off for refusing to participate in group activity. Should he have been let off because he's exhausted and had enough this week? I don't know but the truth is I was embarrassed and also thought he can't pick and choose what he can participate in. Anyway, my point is - we are all human and yes of course we lose patience every once and a while. I really hope you get things sorted soon.

Op, it sounds like you've got yourself stuck in a rut of blaming dd for the accidents etc. You've been given great advice and I would take a step back from it all and look at it as if you were an outsider looking in.

We've all done things in the heat of the moment which we regret, but it's how we move on which is important.

Earlier this evening my ds1 stood at the top of the stairs and weed down them. I've no idea why he did it, it's the first time he's done something like that in a long time and he used to wet himself whenever he was disciplined and didn't like it.

I could easily have got cross - we've now a boggy carpet at the top of the stairs, with towels down to help dry it off. It's a trip hazard to start with. But I didn't. Ds1 didn't know why he had done it so I sorted him first then the carpet. Cuddles and love, telling him not to worry, accidents happen.

I might not agree with everything our daily worker tells me, but changing OUR behaviour is a good way to help our dc's change theirs.

Please don't get cross at your dd - treat poo incidents as accidents. Deep breath, sort dd out then clean up the mess. At 4.5 she is old enough to help, albeit holding a bag while you put soiled items in it.

From what I hear, France has an expectation on children way above that which we do. I'm not saying it is wrong, but that expectation not to behave exactly as a child would in your situation is escalating it to extreme levels of punishment. You know you can't continue otherwise you wouldn't have posted here.

tearfor1 thank you

minisoksmakehardwork thank you too. You are absolutely right about French parenting being too much about discipline and having too high expectations for young babies/children. Not every French parent is this way but this is definitely the general tendency, in my view. My mom was Scandinavian and we were raised the Nordic way, which I always tried to replicate with DD even though ASD makes everything different. And I personally disagree with all the French discipline, even if it means the kids "eat everything" or "respect adult time" or whatever, I think it lacks respect for the children.
In fact, this poo problem is the very first time I'm getting cross at my DD. Most people including my UK/Irish in-laws (and my DH) have been telling me since DD was born that I'm not strict enough and children need more discipline . I never thought I'd ever become like that, this whole autism + poo cleaning madness really pushed me beyond my limits lately and it's not right. Really need to go back to what works ie patience and tuning to my DD's feelings and understanding.

The kids react so differently though. A friend of mine's son (also ASD, same age) also had an impacted colon at the same time last year, but was awfully embarrassed about his accidents. But he went back to normal very quickly (2 months?) whereas DD stayed unfazed about her poo accidents for almost a year, and I thought it was part of the problem. Now she knows it's wrong again so we'll be working on teaching her the basics again - which she knows but seems to forget about 80% of the time.

If it helps, You are certainly not alone, I have an 8 year old that still has a nappy to poo (It's surprisingly common, though the delays mean our children are a few years older).
Sometimes the idea that we are the only ones in a situation means we start panicking, we get worried for our children and make things much worse with stress.

Going right back to basics is a great idea here, reward every wee and poo on the toilet, have her help you clean up the mess when she doesn't, but don't get angry. And use nappies for bedtime and trips out, there is absolutely no shame in needing some protection.

Oh blimey. If I had a £ for every time my dad said I needed to be harder on ds1...

The thing is, it doesn't help comparing them to one another, even if it's to someone who has been in the same situation. Because everyone does things differently. I have twins and that really highlights how different two dc of the same age can be, even when they are being raised the same.

Is your dh on the same page as you with the asd diagnosis, is everyone around you of the opinion she will 'grow out of it?' - it seems they've fallen into the trap of saying you can punish them out of it 'in their day' is a phrase I expect you hear a lot.

Consistency is a good place to be, so everyone deals with the accidents the same. If that means you have to write it out so everyone can follow it in your home, so be it. I find writing the method dh and I agree to deal with X, y and z is a useful tool for us, a reminder to stop and assess rather than launch in blazing away.

absolutely agree with setting up a consistent action plan for everyone to follow.