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?

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.

This sentence stood out for me. It is only September; it will be a whole year before he starts school. Even if he was going to a school where the DC are expected to be toilet trained, I can’t see the rush. The nursery manager sounds very rigid in her thinking in not only not considering your DS’s capabilities but also not understanding your specific circumstances being heavily pregnant and soon to be looking after a new baby. I would definitely continue as you are and would only think of trying some of the suggestions here once you are settled with the new baby.

Sounds awful. My 8yo is autistic and wasn’t really trained until a few weeks before he started reception - there was just no point as he wouldn’t understand ‘you’ve got your pants on, let’s try and pee in the toilet.’ He didn’t even have a clue if he’d wet his nappy and would happily go around in wet pants.

Luckily his preschool were understanding of the fact that he wasn’t developmentally ready and didn’t have the level of understanding necessary to do it. I would be speaking to the manager about the whole situation.

My son was changed standing up at preschool though, in a cubicle - otherwise they would have had to put the mat on the floor in the bathroom and change him in view of the other kids which to be honest I wouldn’t have liked.

Plus if a child is going to be in nappies until they are quite big I don’t think it’s bad for them to get used to being changed upright and ‘helping’ a bit rather than just lying there as soon they’ll be too heavy to haul about!

My DS was day time trained by 12. He has LFA. I thank god he went to a SEN nursery. No way was he able to understand at 3 and a half. My NT DS was still having accidents at that age.

Just seen you said your DS is at a SEN nursery. I can't believe this!!! Their reactions are unbelievable/ they must be used to the children not being ready to be trained. DS only stopped wearing night time pads at 15. No way would he have been ready at 3-10 yo tbh. Fortunately DS's nursery were totally fine about nappies- all the children were in them afaik.

[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]
My non verbal child learnt to toilet train at that age.

Op- I'm inclined to say that you should give it a go- it would be so much easier if you can teacher her while she is a young. If she is having difficulties, get your GP to refer her to an clinic to support her with toilet training. I'm saying this now as it's so difficult to toilet train when they become older- it doesn't not get easier, it becomes much more difficult

language, the most effective way has been to go straight to underwear and to put up with several weeks of wet clothing. Even for the children who were showing very few signs of readiness this has usually been successful as they come to make the link between wetting and the toilet and realise they dislike the feeling of wet clothes

Yes yes, we put DS in pants

My DS is 6. Severely autistic and non verbal. Still in nappies. He has absolutely no concept of knowing when he needs to go

I have also found pull ups completely useless for toilet training children with very little language, the most effective way has been to go straight to underwear and to put up with several weeks of wet clothing. Even for the children who were showing very few signs of readiness this has usually been successful as they come to make the link between wetting and the toilet and realise they dislike the feeling of wet clothes.

This might work with some children, but for others it just wouldn’t make a difference. At age 3/4 my son’s nappy could leak, or he would wake up having wet through at nighttime and would go around playing. If he ever noticed he was wet it didn’t bother him, and as he had poor language for his age there was no point really trying to tell him he was wet. I do get what you’re saying but it just totally relies on the child being uncomfortable and capable of linking the two things, which some just won’t be at age 3.

I think of it like most little 2 year olds wouldn’t be ready, and nor was my son at 3/4.

This really does sound awful, op. It does sound very unusual, coming from an experienced manager at a SEN nursery.

Surely they cannot possibly be unaware of the difficulties involved in toilet training an autistic child. Is it possible he has shown interest in doing this at nursery, so she thinks you should both be encouraging him?

If not, it seems like a positively cruel practice and I'm surprised all of the other parents haven't already voted with their feet. Good luck approaching them on Monday.

I would tell them very clearly that you are not toilet training him right now, and if they continue pushing this I would find a new nursery. I know that's easier said than done with SEN nurseries but this current one doesn't sound suitable at all.

Can you sit down and speak very frankly that you know he is not ready and you will no longer have them pressuring him and you on the matter? Just put your foot down.

My DS sees a paediatrician, speech therapist, has an EHCP and is in receipt of DLA. Suspected autism but the paediatrician refuses to meet him In person due to covid. Its been a year and we've managed 2 phone calls, both after me and DS nursery have pressured them for help.
My DS nursery was very understanding, hes 4 now so started full time school this month, they acknowledge that he shows no sign of being ready, doesn't realise when he needs the toilet or when he's been to the toilet (in his nappy, obviously).
I've had more pressure off family wanting to know why a 4 year old is in nappies 🙄 and they know he's just a normal child.
The school have been fantastic, they helped with the DLA forms, and they specifically wrote about his lack of awareness in his toileting, they fought for his EHCP, and they passed all his needs on to his reception teacher so they know he's in nappies and until he's ready, that's how it will stay.
Basically, you have a very unsupportive nursery who clearly don't understand his needs, so maybe you have to tell them with no wiggle room what your expectations are.

I think you should try OP. What if you send your child in pull ups at nursery? Since you mentioned his doesn't mess with a soiled nappy during nursery time.

I think if I was you I would be looking at school options and their policy of him being in nappies when he starts and if the school is OK about it tell your nursery. My friend's son also had ASD but was in nappies in a main stream school due to bowel issues. Teachers don't usually change nappies in mainstream schools - although his teachers agreed to.

Even completely taking autism out of the equation, potty training shortly before the birth of a new sibling is pretty pointless.
The nursery sound like they're on a bit of a crusade... I would email saying clearly that your son is not ready and you would like the pressure to be taken off this for the next few months, copy in senior staff.

You have my sympathies OP. Both my sons experienced developmental delay. The youngest was out of nappies at four, and the eldest was out of nappies at nearly six and he still needed to be prompted to go to the loo.
We were advised to use star charts to encourage the boys to use the toilet, and we were advised to get them into a routine of sitting on the toilet at regular intervals. The strategies came from the Portage Centre and nursery and other health professionals. However, it was not until their interoceptive senses had developed a little more, and they actually learned to recognise when they needed the toilet that any progress was made. Even in secondary school, my eldest had 'accidents', so we packed extra underpants and trousers in his schoolbag.
I agree with others, ask the nursery to ease up on the pressure.

I had to abandon my attempts at toilet training while I was pregnant with my second. It was way too stressful all round and just made everyone upset! Also when the baby arrived she saw its nappies and wanted hers changed at the same time so I think she would have just gone backwards anyway.

Did it successfully when baby was about 3 months old and everyone was settled in our new routine.

Had to go for it and put up with wet pants and a distressed child but she got it quickly. However she is very sensitive to sensory input like being wet and hates it that probably worked in our favour. They are all just so different!

I found being pregnant the absolute hardest time with my asd child. We are stopping at two as no way would we cope again.

He is still only 3 and a half! My DS, without SEN, was very nearly 3. It is not about training it is about control. Until your DS clicks when he needs to go there is no point.

I bet they are pushing this because it is easier for them.

@DsandNappies.
Op. I am sorry but for a SEN nursery yours sounds crap.
Here even the local school gets that not all children will be physically or mentally capable of using the toilet when they go into reception. (They didn't always accept this and used to refuse to take a 3 year old into nursery unless they were completely toilet trained).
I know that the forms you need to fill in are very daunting but please give it a go. Normally I would suggest asking the school for help but in this case ....
If you do need help then you could ask your health visitor or citizens advice to give you a hand.
My youngest grandson (6) goes to an amazing SN school. Despite us being told at 2 that he would never talk he does. He can't have a conversation but can show you what he wants and is even learning a little bit of empathy.

Tell the nursery that your child is not ready to be toilet trained and that they are to stop harassing you over this .It is your decision. Remember that you are doing this for your child and also for yourself. You are both entitled to this help and you should reach out for it.
Best wishes.
🍫

Ask your HV to speak to nursery? Also speak to health visitor regarding your local procedures with regards to acquiring continence products, for when he grows out of sizes of current nappy, if you don't know already. It's very different from area to area. I agree this is a worrying stance for nursery to be taking - total disregard for your current circumstances. I would expect them to have some healthy optimism for every child though, and not just write them off as not even worth trying some well researched approaches. I hope they have just badly worded their intentions, rather than having completely unrealistic expectations, piling stress on children and parents. Toilet training plans should be agreed between parents and nursery, not imposed by nursery - how about a meeting with nursery and HV? In your current situation you are perfectly entitled to say, this is not the time, for the whole family. Should be glaringly obvious.

Op YOU and paying THEM

You tell them what works

And if they won’t listen talk to the manager

They should be aware even by his behaviour that he is not ready

@Kanaloa

I have also found pull ups completely useless for toilet training children with very little language, the most effective way has been to go straight to underwear and to put up with several weeks of wet clothing. Even for the children who were showing very few signs of readiness this has usually been successful as they come to make the link between wetting and the toilet and realise they dislike the feeling of wet clothes.

This might work with some children, but for others it just wouldn’t make a difference. At age 3/4 my son’s nappy could leak, or he would wake up having wet through at nighttime and would go around playing. If he ever noticed he was wet it didn’t bother him, and as he had poor language for his age there was no point really trying to tell him he was wet. I do get what you’re saying but it just totally relies on the child being uncomfortable and capable of linking the two things, which some just won’t be at age 3.

I think of it like most little 2 year olds wouldn’t be ready, and nor was my son at 3/4.

But that doesn't mean OP can't try. It's very different if OP has tried all efforts to toilet train her daughter and nothing has worked- but there's no harm in OP trying. Be open to suggestions from nursery. There are things that I wish I had a go at when school suggested somethings but I said no. It's much much difficult to toilet train children when they are older. We read the book "how to teach your child to toilet train in 3 days". Well it took DS three weeks but the strategies were very helpful! Believe in your child, try some thing and then if it doesn't work, then take a break and try again. It's funny how our children surprise us.

Paediatrican and HV's advice has always been to try it when he shows signs of being ready.

That's interesting. Ds is developmentally delayed and never, ever showed any awareness of being wet. We changed nappies because they looked bulky, or we thought it had been a while, not because he cried. He was 5 before he seemed to feel it.

Anyway, we were very much pushed by the hv and paed, plus the continence team, to train when he was 3. We had been going down the "when he's ready and shows signs" route - but he simply wasn't. Their instructions were to set a timetable and take him to the loo at those exact times every day, even if he didn't do anything, then hang around in there for 20 mins blowing bubbles, looking at books etc and give lots of praise if he did anything. So it wasn't recognising the need to go, it was more of a Pavlovian response to being in the bathroom.

Cue two and a half years of struggling, failing, wet pants, soiled pants...

It literally just seemed to click one day, and a week or so later we had made some decent progress. But I still remember the guilt of being given the hand outs about training developmentally delayed children where literally the first thing it said was that you MUST train your child and make a point of doing it because some children will never show signs of readiness.

Even now, torn between guilt at not having really pushed to train him earlier, vs fury at the hellish time we had until he was actually ready.

@Kanaloa

I have also found pull ups completely useless for toilet training children with very little language, the most effective way has been to go straight to underwear and to put up with several weeks of wet clothing. Even for the children who were showing very few signs of readiness this has usually been successful as they come to make the link between wetting and the toilet and realise they dislike the feeling of wet clothes.

This might work with some children, but for others it just wouldn’t make a difference. At age 3/4 my son’s nappy could leak, or he would wake up having wet through at nighttime and would go around playing. If he ever noticed he was wet it didn’t bother him, and as he had poor language for his age there was no point really trying to tell him he was wet. I do get what you’re saying but it just totally relies on the child being uncomfortable and capable of linking the two things, which some just won’t be at age 3.

I think of it like most little 2 year olds wouldn’t be ready, and nor was my son at 3/4.

Yes I agree 3 is quite early for a child with severe SEN to be toilet trained, my experience has been with older children (5/6+) with SLD. Although I don’t think children always have to dislike the feeling of being wet for going into pants to work, I think part of the advantage is that the adults around the child immediately recognise the child has wet and respond by making the child stop what they’re doing and go to the toilet so the child makes the association between wetting and the toilet and there is a sort of consequence for not using the toilet that isn’t there in nappies. Obviously it doesn’t work for everyone child but I have found that where we can be training for months with pull ups it can then click within weeks or even days once the pull ups are swapped for underwear.

They are being ridiculous, my son is non verbal and has severe autism and learning disabilities, hes eleven, hes, only been out of nappies for about 12 months, and it took a huge amount of effort from me and his special school to acheive that, he just started at high school for children with severe learning disabilities, and there is quite a few kids still in nappies.