5 year old not potty trained yet. I feel awful but don't know how to fix it.

[Poolnoodlepoodle]

Dd is 5. She has a rare genetic condition PDH deficiency (that's probably really outing but fuck it). She is out of nappies in the day but has accidents very often (several times a week). Sometimes she tells us when she needs to go often she doesn't and it just happens wherever she is. You only get about 10 seconds notice to get her on the loo, pants down super fast. Mostly we end up prompting her to prevent accidents but I wonder if doing this has stopped her knowing when she needs to go?

Her condition has caused her developmental delays all her motor skills were delayed, for example, she has her first steps at 2.5 years old. She still struggles with balance and fine motor skills and always will as the part of her brain that controls those things is smaller than it should be. She struggles with pulling her trousers down, and pulling them up she can just about do it but it's slow.

I've been trying to get her trained for years now. I just feel we've hardly made progress and I just feel like we may never get there.

Anyone who has taught their child with additional needs can you share your tips? I just feel like I've failed her.

It sounds like she just isn't ready yet?

She doesn't recognise that her bladder is full in time to take herself to the toilet and then she doesn't have the physical ability to undress herself to go?

Please stop beating yourself up about it

You absolutely are not failing. Have you talked to your GP or treating clinician about it? Maybe it's a common thing for children with this particular condition and they might be able to point you in the right direction.
Or are there support groups for parents of children with same condition you could ask for support?

Maybe that's it, that gives me hope she'll get there in the end. I guess I was hoping someone out there in mumsnet land had maybe been where we are and had success. School suggested PECS cards today to try and prompt her and to help her remember the process. I just wondered what else people may have done that worked.

We're a bit past the GP now we're under a specialist team at the hospital. In one appointment the nurse (who specialises in conditions like this) said I could ask anything and she'd give an honest answer. So I asked if the fact we hadn't succeeded yet was due to her condition or just me not teaching her right and she screwed up her face and said "probably both". So I guess that means it is possible.

i just don't know how to do it. We've worked on it for nearly 2.5 years now and haven't cracked it.

maybe I do need to ask them for help again. Thanks for the kind responses.

You are not failing and I am so sorry. Just the most cursory glance at the list of issues relating to this condition is enough to know you have a battle on your hands. Good on you, you sound like such a lovely Mum. I'll guess that you have thought of and tried everything but I'll suggest anyway - easy on and off clothing? Velcro, not buttons? Massive hugs to you.

Thank you for the nice replies. I'm a bit less emotional this morning. I think school having a word yesterday made me sad.

I don't want to give up even though I think at this point she'd be happy to be in nappies forever 🤦‍♀️

I wonder if we need to work harder on the clothes and turning around on the step and sitting on first? I was trying to get there with the noticing and telling us so we can take her first, but maybe if she's physically able to take herself she'll be less resistant to it all. We're kind of battling her not wanting to do it and not being able the moment.

Maybe if she'd be happy in nappies or pull ups, just go with it for a while and take the pressure off yourself and off her. I am not medically qualified in any way so please ignore me if this might make things worse, but with the summer break coming up maybe leave it for 6 weeks. Perhaps trying too hard is making her dig her heels in.
Would that make it an even bigger mountain to climb later on? I wish you well and I'm glad you're feeling better

IBS sufferer here. Long time of having issues with the loo and I'm an old lady!

Is it something that might benefit from general work on motor skills? The kind of exercises that you do with someone with dyspraxia, for instance? I just wondered if it might help to strengthen some of the neural pathways that promote coordination and the brain signals to the body. Could you afford to pay for some sessions with an occupational therapist who might be able to help with this.

Good luck. You sound like a fantastic mum.

Does she KNOW it's coming? Wees and poos or is it literally as she's starting to go?

DS pooed every day. Big man poo. But I eventually figured with help from ERIC he was constipated. And had been for so long the nerves were compressed and he had no sensation of needing to go in advance.

Nothing worked.

Apart from curing thr constipation.

He went day dry at 5. He's 8 just and it's v rare he has an accident and normally more about concentration.

He had additional needs, surgery, wonky chromosomes. Everyone just said relax, he's complicated, it'll come... But sometimes it's just an ordinary kid thing.

Get her checked for constipation

And @Poolnoodlepoodle ?
You're a good Mom, you're doing a good job x

Thanks for the replies sorry just working but will reply later. ❤️

I often ask myself if we should just give up and do pull ups / go back to nappies but I'm reluctant because we have made SOME progress and I'd hate to start again. We do have runs of days at a time where she's dry. She will tell us sometimes just you get so little notice you only catch it if you're right near the loo. Poos are better as they take longer iyswim.

Also I worry if it would make her feel babyish at school. Not that having accidents at school is better I guess. Not sure if school would be keen or not.

Its something to think about though for sure.

I think it would. This thread has been good for me to think through a new strategy. We've been in the same place for ages not really improving so it's time to try something new. I think seeing if we can get her confidence up that she won't fall when she's pulling her pants/ trousers down that will help a lot.

we had OT excercises years ago and they did help. On a good day she can wipe herself and pull pants and trousers up! But she often doesn't get them over her bum and walks off with it hanging out till you help her 🤦‍♀️. I've been trying to sort this before working on the pulling them down and getting on the loo bit. Trouble is she often refuses to wipe/ pull up her pants as she's so put out being put on the toilet so I end up doing it. I think maybe practicing similar things and improving balance generally might need to come first outside the toilet entirely.

Its holding wee a bit longer we need her to do too as it's always going to be quite slow if she's doing the clothes herself so it's likely she'd go before getting on the loo. I have no idea how you help someone learn to hold pee though.

This is interesting I'm always unsure if it's her condition causing the issue or something that could affect any child! She is pretty regular with her poos. She eats a lot of fruit. I didn't realise you could be constipated and still poop. I'll look up ERIC I don't know what that is but I'll check it out. It would be wonderful if that was the issue (weird thing to say but I'm sure you know what I mean)

In case this gives you some perspective, my DS1, who had no developmental or other issues, wasn't dry until he was about 8 or 9. We started when he was 2.5 and NOTHING we tried worked. We were sending 2 or 3 changes of clothes to school with him every day when he was in YR and Y1. He got better in the day when he was around 6, but if he said he needed a wee we had to spring into immediate action. Gradually he improved, but he wasn't routinely dry at night until he was about 10. DS2 was dry at night at 4! It really was a nightmare and so stressful, but his body was just extremely slow to develop in this way. He's now 14 and completely fine. Interestingly, he has a friend who was similarly slow, so not unheard of.

Don't let anyone tell you it's because of you. ❤

Thank you that is really reassuring, I think I've been worrying if I don't crack it soon we'll never do it. That does sound very stressful though for you sorry to hear it was such a struggle. Glad he's ok now. They get there in the end.

if she will wear dresses / skirts or maybe soft loose shorts with elasticated waists over the summer, maybe that will give you an opportunity to work on it as one barrier will be reduced?

I’ve no experience with this, but it does strike me that it might be easier if your dd could wear a skirt or dress, then she would only have to worry about pulling her knickers up and down, without the extra layer? But maybe this would not be appropriate for whatever reason, in which case I apologise. I hope you get it sorted soon.

Surely if your daughter took her first steps at 2.5, it's not unreasonable to think that she will be later to be dry as she is overall delayed?

I tend to find she gets very flustered trying to get to the pants under the dress if that makes sense? She doesn't like it getting in the way. But yes summer hols in loose shorts could be a goer. Please don't apologise all suggestions welcome here!

Don't feel that you have failed you haven't I get the same feeling sometimes I have a Ds6 and he is still I nappies we are working on toilet training him but he doesn't understand when he needs to go to the toilet and he's also non verbal.

That's a fair point. ❤️

Oh god yes, I know.
They have a helpline, she was amazing. Be prepared to discuss size and firmness 😂. He's on medication long term, but kid had a bowel resection (x2) so it's always was gonna be dicey

@Poolnoodlepoodle just checking on a few threads I'm on (had a lovely update on another thread about a lady who has a really fortunate house swap and it is going well, so I'm keeping fingers crossed for you too). Hope you're feeling better.

Oh that's sweet. Yes I do feel better thank you. Dd has been ill the last week not majorly ill just a summer cold and lots of nose bleeds. She's had loads more accidents too and I think there's definitely a link to her being ill/ tired and her losing control. The nature of her condition means illness hits her much harder.

Today we were in the car though and she told me she needed to go and we made it into the house and on the toilet before she went. She also wiped herself! The little wins give me hope!

I'll never stop trying to get there but it's one of those things I get down about sometimes.