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.

Good on you and good on her. Poor little lass, I'm sorry she's been ill, on top of handling so much already. That little win is huge win though and I'm glad for you both. Hugs to you.

Talk to the GP or specialist to ask for a referral to a continence service. They may be able to give ideas for example whether pull ups a good thing in your circumstances if they say it is “just” delay ask for tips on how to deal with it as post advice is suitable for a toddler.

Is she in a mainstream school or special school?

Gosh OP, given she has some delays I think you are being very hard on yourself. You have made clear progress, just not quite there yet.

You mention that OT has helped in the past, so I would go back to the service and get some outside help to strategise - it sounds like you can get her there fairly quickly because she’s not far off - you just need a clean eye and a clear plan.

I wouldn’t even consider going back to nappies or pull ons (except for long car journey type situations) as she is a long way there and that will just send her backwards.

To be fair if she has developmental delays it isn't her actual age that determines if she is ready it's her developmental age. My two with autism were late to toilet train but once ready it was really quick done and dusted within a week. I'd try and relax,put her in pull ups or toilet training pants if they still do them. Take her regularly to the loo and pay no attention to any accidents. This weather is perfect for little dresses which will help her with using the loo.

I didn't actually know there was a continence service. This thread has been so useful thank you.

Mainstream with full time 1:1. They manage it really well. They take her on a schedule and mostly it works. I don't think she really ever tells them she needs to go though.

Has she got an EHCP?

The Eric charity is really good.

My girl almoat 8 with Aspergers still has the occasional accident or only just gets to the toilet in time. Understanding Interoreception helped me accept it would take longer. It's about a delay in the messages getting to the brain.
What helped us over the years was sticking to a strict bowel routine morning and night, laxatives as per doc, and accepting that she doesn't know when she needs to pee until she really needs to go. I have to admit it took me a long time to really get this. I still pack spares in her school bag, and whenever we're out.
She will get there, im sure, but it will take much much longer than others.
And realise that when you admit it to the odd other parent, you'll find many others have similar problems, albeit for a myriad of reasons.
My girl refused to wear anything other than shorts or leggings for years before I realised it was for toilet ease.

You have done so well!

I would just take her 4/5 times a day at set times. Before lunch 3pm tea time before bed etc. ‘it’s just what we do - come with mummy / daddy.’

Was coming on to say the same about interception. It is effectively the eighth sense and it is about understanding the internal feelings of our bodies. Things like when we are hungry, ill or need the toilet.
No child's sensory systems are fully developed until they are around 7 and a child with a developmental delay of likely to take longer to achieve sensory regulation. On days where she is tired or under or over stimulation things her interception is likely to be out of whack.
Don't beat yourself up.
Are the continence team involved?

Is it linked to her diet? My older DC have accidents if they have squash or juice. Also, could she just wear shorts with no pants if it's tricky for her to manage both?

Yes she does we got it sorted in her nursery year. It was very much needed.

Yes I had a look at their site as someone earlier in the thread mentioned it. It's very enlightening. I'll admit I've had a hell of a week last week - combo of dd being sick and work being a pig. I will have a more careful read soon.

Please don’t feel bad for not having potty trained your delayed child yet. Neurotypical standards just don’t apply to your family.

My son has a fortnightly OT and SALT session written in his.

Just thinking that regular OT session's may help.

Both these answers are really interesting. This thread is giving me new terms - interception is a new one but very useful! She definitely responds a bit slowly to things. She definitely gets overwhelmed/ overstimulated easily. I think acceptance will need to be part of it. It's funny how it can take a load of strangers on the internet to make you see that.

She's just a water/ milk child. She won't drink squash and juice is too sugary for her (her condition means she makes excess lactic acid if she had too much sugar).

We already have her in pants a size up for ease of pulling up and down but yes maybe no pants, tricky at school though. It's not just the clothes either it's the getting on a step and balancing enough to pull things down and turning and sitting. Most people manage this no problem but for her it's a real struggle bless her. I'm terrified she'll fall and bath her head and then never want to try again. I hope when she's bigger and the step isn't needed that will help.

Ah! Interesting, she has BEAM written into hers but OT is a thought. They came to us once but then basically dismissed us from the service due to high demand. I may need to push for more OT stuff. We just got our first in person physio appointment since before the pandemic the other day. You do get to the front of the queue eventually!

I was going to post about bigger underpants and loose school shorts or trousers with an elasticated waist, plus something like bloomers for summer when she's at home.

What you need right now instead of an itty bitty stepstool is a bigger stepstool - more like a platform - that she can safely step onto and turn around on. Do you know a carpenter who could make one?

www.amazon.com/Ecrocy-Outdoor-Mobility-Seniors-Toddlers/dp/B07CYRXTVQ/ref=asc_df_B07CYRXTVQ/?tag=hyprod-20&linkCode=df0&hvadid=309849901364&hvpos=&hvnetw=g&hvrand=15791054166550290491&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9021569&hvtargid=pla-608622699554&psc=1

Or buy two of these?

I second the advice to push for an OT assessment and intervention.

As always everything is a fight with a SEN child...
. And the local authority refused to do an OT assessment or SALT.... despite the Educational Psychologist recommending further assessments....

Anyway cut a long story short... put in formal complaints as they had breached the SEN regulations of assessments... and to shut me up they paid for a private OT assessment which included a sensory profile too. I paid for the SALT one.

The LA then had to use these assessments in the EHCP as per the law.

Also ... sorry am on a roll now! My DS EHCP was basically rewritten by a SEN solicitor so it had absolutely no wriggle room for the LA to get out of providing provision. Too many EHCP are not specific enough which leaves the child with no support.

My son is 6 and still wetting himself a lot. He has dyspraxia and asd. Having regular routines has helped, putting him on the toilet throughout the day and before we leave a place.