Potty training with SEN

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DD is 4.5 years old and has a very rare genetic condition. She is deaf and has a hearing aid (currently being assessed for implants), she has mild global developmental delay and mild learning disability. I think she may also have some sensory processing issues. She said she wanted to wear pants, so she has been wearing pants all week but she refuses to sit on the potty when I ask her to and when she wants to sit on the potty she doesn't do anything in it. She doesn't even seem to notice when she is wet! Do I persevere or go back to nappies?

If she is Deaf enough for a CI, how is she communicating? Is she telling you she needs to go at all? As she has GDD it is entirely likely she has SPD also, this is a hurdle, not necessarily a barrier. The fact she wants pants is really positive.

At 4.5, unless she is teeny, a potty is probably too small and a bit uncomfortable. A toilet insert with a step will be better though make sure she is posturally secure as if she feels unsafe she will tense up and therefore hold it all in. If your toilet is by a bath for example, she could have a hand on it to feel stable. Feet on a step is good for stability; knees need to be raised for a good poo position. Don't let her lead if she doesn't know when to go - plot her wee and poo times for a few days and see if there is a pattern. Don't take too often, you don't want to encourage an anxious bladder. Put a pull up over knickers when you are out, so she knows she is wet and you are not giving mixed messages once you have started. Open up a pullup to put in the car seat to avoid it becoming a pool of pee if she goes in the car. Don't try at night yet, that often takes much longer for children with interoceptive issues. That was long, sorry!

A toilet insert with a step will be better though make sure she is posturally secure as if she feels unsafe she will tense up and therefore hold it all in
This is good advice. You can even get ones with frames and steps. Look for a pottette (?) collapsible seat you can carry in a bag.

Is she open to bribery?

She is very tiny, she is smaller than my 2 year old! Toilet is difficult because she doesn't like feeling high up- I have to change her nappy on the floor as she screams if she goes on a changing table and she sleeps at floor level.
She is verbal albeit very delayed- her language is probably at the level of a typical 2 year old. We also use cued speech. She has no hearing at all in one ear but the other ear does benefit from a hearing aid.
Tracking how often she goes is a good idea, I never really knew before because she didn't say when her nappy was wet or dirty.

DS was definite he wanted to get rid of nappies, however he had no idea when he had to go or had been. In the end (make sure you have a spare pair of shoes for her!) i said either he agreed to go when i told him to with no fuss or back into nappies. He chose no nappies and i made sure he went regularly plus before leaving the house. It was 2-3 years before he regularly went of his own accord...

Don't change her lying down if you can avoid it, it is not a 'pro-toilet' way to clean, standing up is more toilet like. If she has some communication make sure you use the same reduced words and cues consistently, so she remembers what to say if she makes the connection. If she is scared of being off the floor, that is postural insecurity/vestibular insecurity, which in part may be explained by a unilateral hearing loss. I do think, given her age, a step, insert and even maybe a toilet frame if needed for additional stability.

Last year we finally got our daughter reliably in knickers rather than pull-ups at the age of 11. (Still nappies at night)

I'm not saying that to try and dishearten you so much as to say don't feel that if she's not toilet trained now it will never happen. Our daughter sounds very similar to yours and it was easy to feel that once she was in school in nappies the moment had passed and a lot of people's attitude was 'well, she's disabled so don't worry about it'. We happen to know (because of her brother's medical needs) a paediatric continence nurse who is passionate in her belief that every child should have the chance at having the dignity of being clean and dry if that's at all possible for them and we shouldn't write that off if they don't toilet train 'normally' or at the typical age.

We didn't stress about 'going backwards' either. We had a good stab at toilet training in the summer holidays before starting secondary school. She seemed to crack it literally the week before starting her new school and was then understandably nervous about going to new, big school and having to contend with pants as well. So we agreed with her she could wear 'just-in-case' pull-ups at school and change to knickers when she got home. That worked well and I had to remind myself that she wasn't a toddler and was capable of making that choice without it necessarily scuppering everything.

it was lock-down that finally cracked it. She was shielding and was at home with us all the time from March until mid-August. About a fortnight in we 'ran out' of pull-ups and it's been knickers ever since, including back at school.

So don't worry if it doesn't happen this time.

I'd recommend the children's continence charity Eric - they have great resources specifically about toilet training children with disabilities. Their guide for children with additional needs is here: www.eric.org.uk/guide-for-children-with-additional-needs

@Hughbert toilet insert/frame sounds like a good idea, I'll look into it
@FreezerBird well done to your daughter for cracking it, I'm hopefull mine will get there one day too, but it might be a long process!

DD has severe learning disabilities and is non verbal too but she finally mastered it age 7/8. Her school were instrumental in our case (tracking water intake and frequency of wees) and were in fact the ones who suggested she might be ready.
At home she had a seat to go on the toilet but as you say your daughter doesn’t like being off the floor then I’d say definitely use a stool as well for her feet to be on. Might make her feel more ‘grounded’ iyswim.
If you google toilet seat and stool you’ll see different kinds.