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.

Is she drinking plenty of fluids? I had some trouble getting my daughter dry overnight (she was 8) and talking to a friend who’s son was not fully dry day or night (at 9) and who was under the care of a specialised continence team she explained that she’d been advised that drinking enough water is what expands the bladder and increases it’s capacity. My daughter was really motivated so bought a special large water bottle (camelbak - I think it’s 1L) and aimed to drink it multiple times a day. That and a bed wetting alarm did the trick in about 3/4 weeks (although being woken by the alarm was painful for us both!). Appreciate that’s not the same as your situation, but drinking more might help…. Good luck.

It sounds like you've had some great pointers here. Just coming on to add that the Continence team and/or OT should be able to help you with a larger toilet platform step, handles, or even a child size commode that you can keep nearby so she can access the toilet quicker and easier. :)