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?

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

Come on now OP - have you forgotten that you are the client, paying their fees?

It's hard to believe they tout themselves as specialist, then ... refuse to accommodate special needs, but I'm sure there are plenty pf PP who will have been through similar depressing experiences.

YES, put your foot down, & put a hob-nailed boot on it beforehand.
If they fail to understand, they are clearly either unprofessional or incompetent, & not good enough to look after your little boy. It's bloody ridiculous to demand that a;; children do XYZ by the book, & to place you & your son under the extra stress of ridiculous rules-based hoop jumping is ignorant & cruel.

Do you have alternative nurseries near enough by OP?
Because this -
They appear obsessed with toilet training and completely tone deaf.

• is disgraceful.

You need to tell them to do it your way, or you will remove your child & will be raising competency questions re: their SEN status with ... (whoever the authority is, sorry, but am sure you will know).

For some children they just dont have the awareness that they need to go to the the toilet, my son does now, and we know the signs to take him, but it took months of persistance and endless wet clothes for that to happen.

My daughter is 5 and still in pull ups. Her nursery and then school we're amazingly supportive and understanding. Your nursery should be ashamed of themselves not understanding an ASD Childs toilet needs. Disgraceful get him out of there asap as this means they are probably putting extra stress on him when he's there and you're not there to see what's happening plus he's non or semi verbal so he can't tell you what's happening, please get him out and report the nursery asap.

My daughter is ASD to btw so I understand

My daughter is Autistic, she is 6 years old and is just started using the toilet this year and even then she still goes in her pants sometimes and smears. If he's not ready, he's not ready. I can't believe the nursery are putting pressure on you like this, I would actually make a complaint.

The thing some professionals don't understand is that if you had all day to spend just on toilet training to the exclusion of every other form of learning and therapy and everything else goes that goes with looking after a child with a severe disability and everything else involved in running a house then you might ( and only might) get a bit further on with the toilet training. But you have to do all the other things as well so you can't do it.

As to dla forms. Order them then you know you have a deadline and have to get them done by. Ad friend had to order mine to give me the kick in the butt.

Thank you all for the replies, I've just checked back on the thread today to update and caught up with the posts.

I've been sat on it for a couple of days deciding how I wanted to proceed WRT a complaint. I'm definitely doing it now.

So a development..

OH has been doing drop off and pick up. He has just called me after collecting DS to tell me that they told him they did an 'experiment' today.

This "experiment" he's told, is to "check whether the child's bladder is strong enough to start toilet training" or some shit, I'll ask him to clarify the story when he gets in. Excuse the language I'm angry.

So they removed DS nappy and didn't give him a drink for a couple of hours, he remained dry, they then sent him for his mid day nap at as usual.

When he woke up he had of course wet himself and his clothes, so could have been laid in wee for an hour.

What did they expect seriously? I have told them non stop, he isn't ready, he has no concept of when he needs to go. So they've made him wet himself on purpose as an "experiment" when even children who are dry during their waking hours aren't always dry when they sleep.

How would you deal with this?

Complaining to the nursery manager (who is the one spearheading the whole thing) or go above and speak to his EHCP manager/ofsted?

Isn’t nursery supposed to make your life easier? It doesn’t sound like it’s working for you, or your child, and you should probably find alternatives, if you can.

I think the correct course would usually be the manager, and if you get nowhere you take it further.

And I would be taking him out as well.

Good luck. They sound dreadful.

This is totally ridiculous by the nursery. Your child may become toilet trained in his own time, that could take many years - as a comparison, our son is 12 years old, ASD/SLD, functions around years old and he is still nowhere near ready for toilet training. He has no sensation of going, no sense of urgent need. We've tried letting him watch us, we've tried letting him sit on the toilet at appropriate times; the only thing we haven't tried is toileting by stopwatch (seriously, who can perform to the clock?)

His SEN school have never pressured us, they were happy to accommodate "trying" when he was in Reception and they had a toilet adjacent to the classroom; since then they have accepted that he is not continent and are happy to change him. I don't know if they do so standing up or laying down, I still change him laying down on his bed.

*functions around 2-3 years old

Thank you

I've emailed our local SENDIASS team asking for some advice with how to proceed.

Honestly I feel like the nursery just steam roller over me. I've told the manager multiple times he isn't ready and they discount it each time. I'm not listened to and feel I need a professional to back me up.

It's incredibly difficult timing if I were to take him out now as I'm due in a few weeks, having a section and DS will need to keep a semblance of routine. Nursery has been that. I'm really upset that it has come to this and that I'm in the position of having to consider it, now of all times.

I'm not even sure whether other local nurseries would take him and his EHCP, or what places are available and where. I may well end up with him at home full time until school next year.

My dd is autistic, mid level I suppose on the spectrum. She was 4.5 when she sort of potty trained, but was 9 overnight and still (age 20+) has accidents especially overnight. Don't feel pressured, but also don't assume lack of language means they cannot process information. We discovered when dd finally got round to talking that (a) she had a huge vocabulary (literally from not verbal to full speech in 3-4 weeks neatly 5 years old) and she could already read

We discovered when dd finally got round to talking that (a) she had a huge vocabulary (literally from not verbal to full speech in 3-4 weeks neatly 5 years old) and she could already read

That’s astonishing!

I would write a formal complaint to the Manager and cc in the EHCP case worker. You can speak to Ofsted for some informal advice and (having made a formal complaint to my DS nursery in the past) I have found them very helpful. They can tell you the procedure to make it more formal if you chose.

I'm sorry you are going through this, it's a terrible way to treat a child. For what it is worth, my DS trained at 3 years 7 months. Showed absolutely no signs before the day he took his nappy off and said "no more". That was that (I acknowledge that was incredibly lucky) My point is, children with special needs take their own paths, don't fit neatly into a box and require patience and understanding. Not patronising bastards who do "experiments" on them.

Good luck and sending That truly is horrific!

They abu given his additional needs BUT I have some sympathy with them. Does his echp give him 1 to 1 etc?

If not the nursery will be managing on a ratio based on NT kids his age, which would assume fairly independent toileting. It must be really difficult for them to manage staffing on those ratios with a child who has to be changed by a member of staff.

It’s ridiculous they are trying to force this on you. You know best!

OP, this sounds so stressful. If you can keep him at nursery for the time being as it is part of his routine and with the new baby coming that will already be a lot of disruption and change for you all. Be very clear in your discussions with SEN and the nursery manager that rather than following your expertise and knowledge as a parent they have proceeded with habit training and this latest "experiment" where he was left to wet himself. This all backs up your point that he is not ready. He cannot recognise when he needs the toilet, cannot hold urine and the habit training has obviously not worked either. Look around for alternative provision in the meantime. I am sorry you and your little one have been subjected to this.

@DeepaBeesKit

They abu given his additional needs BUT I have some sympathy with them. Does his echp give him 1 to 1 etc?

If not the nursery will be managing on a ratio based on NT kids his age, which would assume fairly independent toileting. It must be really difficult for them to manage staffing on those ratios with a child who has to be changed by a member of staff.

I must take issue with this. I run a childcare setting and we run on the usual ratios and have a few children with SN but are a mainstream setting.

I have a lot of children who need, not just changing but regular changing, some aren't toilet trained, some are not very reliable, some are more or less independent but most need reminding to go or there will be accidents. Then they pour the water all over themselves, spill drinks, drop their yogurt in their lap...Changing children is a major part of the job SN or not. But this is a setting with a specialism in SN...late toilet training is par for the course.

Anyway OP, this is awful. If they genuinely feel he is ready then they should have a discussion with you not force the issue! I was going to say that I was worried they would be putting him constantly on the toilet or leaving him there for extended periods...but witholding water??? That is against the welfare requirements in the Early Years Foundation Stage and I'd make a complaint to OFSTED.

That's the thing yes it's a SN setting.

They just want all of the children out of nappies. Just bonkers. There are children there who are toilet trained but that shouldn't be the expectation of all of them.

Something else worth noting is that there seems to be a high staff turnover and new assistants starting all of the time. 4 people have come and gone over the last 6 month's which is a bit

Last week, when DS came home his nappy was all twisted and not secured properly as though they'd just rushed it. OH thinks the pressure to get DS out of nappies is because the staff don't want to change them, but as PP said - changing and handling personal care needs is part and parcel of a SN nursery / SEN setting when there are children who require it.

"Dear nursery manager
I am giving birth in a couple of weeks. Now it's not the time to be toilet training DC. He will be experiencing a lot of change to his life in the next couple of months, and I'm not prepared to add to his stress when he has so little understanding of the situation. Please cease any attempts to change his toileting routine until I let you know that we are ready and able to work with you on this. Thank you"

It's= is

@saraclara

"Dear nursery manager I am giving birth in a couple of weeks. Now it's not the time to be toilet training DC. He will be experiencing a lot of change to his life in the next couple of months, and I'm not prepared to add to his stress when he has so little understanding of the situation. Please cease any attempts to change his toileting routine until I let you know that we are ready and able to work with you on this. Thank you"

That's very well written, I think I will send this. Thank you