Under pressure to toilet train severely autistic child. AIBU?

[Dsandnappies]

My DS is 3.5, with a diagnosis of ASD and he has an EHCP. Socially, emotionally and intellectually he functions at around 12-18 months old so is quite delayed. He has limited speech and understanding. Paediatrican has referred to him as being on the severe end of the spectrum.

He's not toilet trained because he's just not ready. He doesn't know when he has been, or needs to go. He has no concept of what a toilet is for. He doesn't recognise when he's wet/dirty. If he can get inside his nappy when he has pooed then he will play with it such is the level of his understanding of it (he has never done this at nursery)

His nursery are putting pressure on me to get him out of nappies. They wanted me to switch him to pull ups and sit him on the toilet constantly every day. I reluctantly agreed for a quiet life because they were insisting he was ready, but I knew it wouldn't work.

I trialled it for a few weeks with no results so reverted back to nappies and stopped putting pressure on him to sit on the toilet every day. I'm expecting another baby in a few weeks so to be honest can do without the additional work when I know he isn't ready.

Nursery manager brought it up again yesterday and I told her he's not ready, she said I have to try again and stick at it because they always want to get the children out of nappies by the time they start school. Personally I think the insistence is driven by them wanting to make life easier for them, not nessecarily DS.

This is a nursery for children with SEN btw, and he will be going to a school for children with with autism.

I know my child better than anybody else. I know he's not ready. He might not be ready for another year, he might still be in nappies at 10. Some children with severe ASD are still in nappies at 15.

WIBU to put my foot down and ask them to back off about it or do you think they're in the right?

Another (retired) teacher of children with severe autism in a special school.

It was absolutely normal for us to find that maybe 50% of our intake of five year olds were in nappies. The nursery is being ridiculous.

The standing up to change them thing, has become best practice though, I'm afraid. Particularly for older children it's considered to be more respectful. It also means they can be taken to be changed in the toilets (as speculatively perched on one) with their peers instead of being spread eagled on a changing table with the required two members of staff to one child (which of course leaves the class understaffed as well as being very undignified for the child).

as= and

[quote Merryoldgoat]@herculesoffline

How you you suppose you train a child without the language skills to understand and no understanding that he’s soiled or wet himself?

OP isn’t saying she’ll never train him, just that it’s not realistic now.[/quote]
Through behaviour training

Like a dog learns to go poo outside or cat learns litter tray.
I am not being demeaning, but kids,with severe Asd and ld can learn . But it might be later of course.

AbA approach worked for my ds but it was age nine
It was very intensive seven days literally living next to commode chair with special treat for success.and having his carers work shifts as had to be full on one to one.

However I haD no issue with school trying...
Let them try toilet training.
Time training can haVe some success.
Are they asking you to keep a strict log or just asking?

Get the book
Toilet Training for Individuals with Autism or Other Developmental Issues: A Comprehensive Guide for Parents and Teachers www.amazon.co.uk/dp/1932565493/ref=cm_sw_r_apan_glt_fabc_KBJAF0MK9CCK4H9S89N6?tag=mumsnetforu03-21

Noted about the standing up thing, I can see why that works best in schools etc.

They haven't asked me for a strict log per se but are asking constantly, telling me to change his nappies in the toilet and scrape the poo down the toilet infront of him etc.

My bathroom is tiny it's just not practical for me to be getting down on my knees squeezing my whale-like self between the bath and the toilet. I also have SPD which makes everything much harder.

This isnt the right nursery for him..... Will give a little tip tho as someone who's toilet trained two severely Autistic dc I used to put knickers on and a nappy over the top. So they could feel what being wet felt like as modern nappies as so comfortable. They'd immediately want it off when wet and we went from there.

It can't be forced tho, no child can be toilet trained until their brain and body is ready.

My neurotypical ds wasn't potty trained until over 3 & nursery never even mentioned it... was never an issue.

My friend has two autistic boys who are non-verbal and still in nappies at 7 and 9.

I think the nursery staff are being wildly optimistic at best, OP. Don't push him until he's ready.

@Dsandnappies

They've really made things hard for me at home too. DS won't lay down to change his nappy now, because nursery have instilled in him that he has to stand up (pull ups)

So whenever he has a dirty nappy at home I have to change it with him standing up, it's not an easy task at 8 months pregnant when he's done a number 2.

If I encourage him to lay down to change his nappy he gets upset and stressed

I had no problems with him at nappy time until they started forcing this crap and now it's made life twice as hard at home.

What help do you get at home now aNd when you have newborn? Are you under children with Disabilities team? If not self refer for assessment now You could ask for short term direct payments to hire in help for few months if physically you cannot tend to his needs. Do you get dla for him? Can you use that to pay for extra help Or will other parent take time to be at home?

Thank you for the toilet training tips btw, I'll make a note of everything for when we do try again

@Dsandnappies

Noted about the standing up thing, I can see why that works best in schools etc.

They haven't asked me for a strict log per se but are asking constantly, telling me to change his nappies in the toilet and scrape the poo down the toilet infront of him etc.

My bathroom is tiny it's just not practical for me to be getting down on my knees squeezing my whale-like self between the bath and the toilet. I also have SPD which makes everything much harder.

You need help then. Get carer assessment from children with disabilities team SS. You need short term daily help for few months Or use dla to pay for home help As pregnancy has disabled you

What help do you get at home now aNd when you have newborn?
Are you under children with Disabilities team?
If not self refer for assessment now
You could ask for short term direct payments to hire in help for few months if physically you cannot tend to his needs.
Do you get dla for him?
Can you use that to pay for extra help
Or will other parent take time to be at home?

DS father is with us, he's very hands on and does more than his fair share at the mo given my reduced mobility.

We're not under the children with disabilities team no, that's a branch of SS isn't it? I actually referred us last year but didn't get anywhere unfortunately. Will reconsider referring again.

Not currently in receipt of DLA, but that's only because I've put off doing the forms. It's so daunting. I will apply though I just need a kick up the backside i think.

The 'normal pants inside the nappy' thing is what we did at school when toilet training, too. it's a bit of a pain and meant parents sending in loads of pants every day! But today's nappies are so good that kids otherwise never get that uncomfortable wet feeling that makes them want to be dry.

@saraclara

The 'normal pants inside the nappy' thing is what we did at school when toilet training, too. it's a bit of a pain and meant parents sending in loads of pants every day! But today's nappies are so good that kids otherwise never get that uncomfortable wet feeling that makes them want to be dry.

It sounds like a really good idea, I'll definitely try that when we commence training again.

@Dsandnappies

*What help do you get at home now aNd when you have newborn? Are you under children with Disabilities team? If not self refer for assessment now You could ask for short term direct payments to hire in help for few months if physically you cannot tend to his needs. Do you get dla for him? Can you use that to pay for extra help Or will other parent take time to be at home?*

DS father is with us, he's very hands on and does more than his fair share at the mo given my reduced mobility.

We're not under the children with disabilities team no, that's a branch of SS isn't it? I actually referred us last year but didn't get anywhere unfortunately. Will reconsider referring again.

Not currently in receipt of DLA, but that's only because I've put off doing the forms. It's so daunting. I will apply though I just need a kick up the backside i think.

Apply now call and it will back date Look at the cerebra guides Call ss children with disabilities team fir urgent carer assessment They are gatekeeper to extra support What if you have to stay in hospital long time after the birth? Who looks after ds?

cerebra.org.uk/download/disability-living-allowance-dla-guide/

Looking at the cerebra link now thank you!

OH will be looking after DS if I'm in hospital for an extended period, with support from DM when needed. Hopefully I'm not in for long. I don't fancy that

I can’t believe an SEN nursery is telling you this. I would be clear with them that it isn’t happening and you will deal with school when it comes around.

"can't be forced tho, no child can be toilet trained until their brain and body is ready."

I think with intensive training and approach it is possible in more cases than might be thought. My ds is good example. Even when seems impossible you cannot always go by usual signs in non verbal ASD.
But pregnancy spd and newborn not the right time. So wait until more help in place at home for one to one.

It's quite shocking really isn't it.

They think that because he will sit on the toilet for a few minutes he's ready. He isn't. He'll sit anywhere for a few minutes if he's given a distraction / sensory toy, even the barber's chair which he hates with a passion.

And tell nursery that you don't mind them sitting him on toilet thru the day
But physically you cannot do what they asking since you eight months pregnant

That's the plan embrace

Your son sounds exactly like my daughter. She is now 6 and around the 18month social/emotional age. We toilet trained her after she had settled into her SEN school in 2020 so she was 5 (she was deferred from school for a year). In October of the same year her teachers discussed with me that they thought she was ready as she was showing interest in the toilets. We worked alongside the school and it was done in 2 weeks.

It sounds as though this nursery has some weird obsession with toileting. You know he's not ready so do not give into the pressure. An SEN school will not be expecting all children to be toilet trained.

Glad you've had tons of good ideas.
My son was toilet trained about 6 when we went for it over a half-term.
Don't rush yourself or him, their priorities are not yours.
Just take your time. You are doing the best you can.
☕🌸

Don't bow to the pressure.
Unfortunately I did and like others experienced poo holding.
DS still holds his poo now 6 has major fears around the toilet and uses laxatives.