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?

Can you report the nursery? What they are doing sounds detrimental to the children’s welfare.
This ‘toilet training’ could lead to years of additional problems. It all seems so retroactive, there’s been any number of studies on the harm in potty training children who are not ready, never mind sen ones.

@Dsandnappies

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.

The staff turnover is worrying, you do get a bit of that but it seems excessive.

I could be way off beam here and I dont want to worry you but the twisted nappy thing...there isn't any chance that they could be letting him run around with nothing on is there? I mean I'd like to think not but their methods have been unconventional so far. If I were you I would turn up early and unannounced, I'm still worried they could sit him on the toilet for a long time.

DS was 5 before he was fully trained and he is Level 2 ASD and that was with 2 years of trying to get him fully trained. I think they are being very unreasonable expecting a late term pregnant woman to train a child who really isn’t emotionally or psychologically nearly mature enough to TT.

DSs nursery put huge pressure on us to take him out of pull ups and in the end they wanted us to pull him out for a month but we just said no to both and they let it roll eventually - but they were a mainstream setting. It is so hard when even a special setting doesn’t support parents.

I'd persevere with the pull ups, he may surprise you.

@Dsandnappies

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?

I woukd be really annoyed about this, as i said upthread my eleven year old non verbal severely autistic son has only been out of pull ups for about 12 months, hopefully it wont take your child as long, but we had tbe learning disability team involved who did a toileting assessment, to ensure he was ready, and it took months broken up into little steps until we got their obviously every child is different but as a special needs nursery they should be fully aware of this.

This makes me so cross on your behalf.
Our nursery was almost the opposite and didn't want kids to care for who were forced to train too early. They asked to seek the nursery agreement before starting. I refused to do that either, but it's better than forcing it early.

I totally agree it seems too early to try PT and not a good time for yourself either. Yes, many children with SEN do crack it eventually but they are usually a bit older. What a lot of stress they are causing you.

My DD 3.5 is delayed with motor, social and s&l skills with possible ASD, she's nowhere near ready. I tried several times over the summer and we didn't get a single wee in the potty. She just wee'd all over the floor and then screamed in distress and begged for a nappy on. I've just backed off with it now and a very top nhs paediatrician we saw agreed she's not ready yet. A couple of her NT friends were just recently trained at 3y6m and 3y8m and my DD is currently only 3y5m.

I'm sorry but 3y 8m really is late for an NT child. Maybe not NT?

I literally don't know any NT kids among wider friends who've been trained later than 3, I always thought it was a MN thing! Most where I live train between 2 & 2.5 before joining the local preschool, few children there aren't trained and it tends to be those with very obvious additional needs.

Ps that nursery are mad though OP. In a SEN setting as you say most children train much later if at all.

@DeepaBeesKit

I'm sorry but 3y 8m really is late for an NT child. Maybe not NT?

I literally don't know any NT kids among wider friends who've been trained later than 3, I always thought it was a MN thing! Most where I live train between 2 & 2.5 before joining the local preschool, few children there aren't trained and it tends to be those with very obvious additional needs.

My very NT oldest child was three years and two months before he was reliably toilet trained in the great scheme of things it really doesnt matter though the vast majority of children without disabilities will be toilet trained by the time they start reception, those that arnt, very often have undiagnosed neuro developmental disability, s many will be diagnosed in the primary school years.

I agree 3y8m is on the later side but this child is at full time nursery and meeting all age appropriate targets in others areas, they all tried and he didn't get it for months and then it just suddenly clicked.

I know many DC who were over 3, my eldest DD is almost 12 and she had several friends who we still know now and they don't have any SEN, ASD or other dx, it just took a bit longer. I also know some who were 18 months.

Thank you all so much for the perspectives and advice.

DS is not himself at all today, he came in and has spent the rest of the evening sitting on the sofa looking glum. Fell asleep for half an hour which is unlike him so late in the day, then woke up and has remained on the sofa not wanting to play.

He's either upset about nursery or coming down with something.

This is one of the hardest parts of having a disabled child, for me. He can't tell me what's wrong so it's always guess work. Bless him.

@DeepaBeesKit

I'm sorry but 3y 8m really is late for an NT child. Maybe not NT?

I literally don't know any NT kids among wider friends who've been trained later than 3, I always thought it was a MN thing! Most where I live train between 2 & 2.5 before joining the local preschool, few children there aren't trained and it tends to be those with very obvious additional needs.

Even if you think it is late for a NT child, what do you think the relevance is here? It’s like pointing out that ‘ooh most NT child can talk at 3, that’s sooo late.’

Meeting milestones later is pretty typical of children who are ND. Obviously. That’s why op has specified that he is at a SEN nursery.

This is ridiculous. If they are going to a SEN school there will be plenty still in nappies/incontinence wear. My niece is 10 this year, with severe autism and learning delays and she is still in incontinence wear and probably will be for a while to come, if not ever. I'd be having firm words with the nursery!!

I have had a different experience at my nursery for my son. My son is behind on speech and is 3 yrs and 4 months. Go to school Sep 2022.

He just moved upto the pre school room and I panicked thinking we would need to potty train. Spoke to room manager and she said no. He's not ready. Don't push him.

Has your local authority got a toileting specialist nurse? Ours has and they have been really helpful with suggestions for getting used to the toilet appropriate to developmental level (and supporting that it is way too early to toilet train now). Our 3 year old is autistic and an a mainstream nursery with 1:1. They have no problem with changing his nappy and no pressure to toilet train. It is mentioned in his EHCP that he needs this help under 'personal care' too.

That's awful.

I work with severely autistic children.

Some are toilet trained and some aren't.

They are 14-16.

I always say put the ball back in their court. Ask them for a detailed plan of what they do. Their logs etc of successes, frequency of visits and if he requests it or they take him.

They haven't had one single success with DS despite prioritising attempts to get him to use the toilet for months, he has zero idea what is expected of him. We also had zero successes at home when we were gently encouraging him the last time they insisted he was ready.

When OH picked him up today one of the new assistants said (infront of the nursery manager) that DS had done well with toilet training today, OH was puzzled and asked whether he'd used the toilet and was told no but he did sit on it for a few minutes.

They are hugely overestimating that as a sign he's ready, because DS will sit anywhere If he's in the right mood, an adult is placing him there and he's given a distraction toy.

He would happily sit on the toilet at home for a few minutes if he has his tablet on and an adult is standing infront of him, but then he'll happily sit on the kitchen counter or on a bus - that doesn't mean he's ready to learn to cook or drive a bus iyswim. Apologies for sounding petty they just wind me up so much.

I'm definitely going to send the nursery manager that message above tomorrow morning.

I also want to find out whether they're following his EHCP accordingly, because one of the top priorities noted on it is his need for SALT to be incorporated by the staff.

They seem more bothered about getting him out of nappies than they do anything else as I'm not getting any feedback about SALT techniques they're using or progress with that, only ever generic updates about what he's done during the day (sand/toys) and going on about nappies.

Sounds like you need to follow that note up with a face to face meeting to ask about the EHCP.
Ideally you and the nursery should be working in tandem on the SALT techniques, which requires both sides to communicate with regularly on how it's going.

I used to visit the nurseries with SEND facilities that fed into my specialist school, when I had the new intake. On the whole I wasn't impressed. There just wasn't the focus on communication that we could spend all day on. Free flow just doesn't suit severely autistic children. I'd often find the child I'd gone to see, just wandering. Happy enough, but no-one really prioritising them. And they probably couldn't.

You should see a massive difference when he starts school. Being in one room with a small group of children, all with the same needs, with close attention from several adults, worked wonders within weeks for our kids. It was really rewarding because the parents thought I was wonder teacher! But really it was about the environment and the focus. We didn't give a monkey's about whether the kids were in nappies or not.

You do sound like a wonderful teacher sara and obviously have the kids best interests at heart, it's a shame all of these early years provisions don't operate in the same way.

I am really optimistic about him starting school, I submitted my first and second choices for special schools a few weeks ago and his EHCP caseworker is onto it. If he gets into my first choice (which is a school specifically for autistic children) I'll be over the moon. They have a great reputation and work closely with other schools in the area providing advice and support for the SEN pupils there. They also have an outreach service. Overall they seem perfect for DS.

Strangely, when I told the nursery manager what my first preference was she responded with "oh..." I asked what she thought and she said she assumed I would want DS to go to a more mainstream school.

I was taken aback by that because he is, as I said, severely autistic. There's no way he would cope in mainstream. The first choice is perfect for him and children with his degree of needs.

I've sent that message to the nursery this morning and I'm waiting for a response, when I get one I'll ask to set up a meeting to discuss the EHCP.

Oh OP you're handling this so well. I am also aghast that a specialist nursery is behaving like this - it's completely unacceptable.

I know you know you're not being unreasonable in anyway but for (another) comparison my NT child toilet trained when he was ready at 3 years 9 months, and my autistic/ADHD (but in mainstream and verbal) child toilet trained at 3 years 6 months but wasn't dry at night until he was 7. There was never any pressure to toilet train either child from our mainstream private nursery.

Is the nursery a single site or is it part of a chain? If part of a chain I'd be tempted to find the email of the MD/CEO and send over the email trail about not toilet training your child and tell them the manager is refusing to engage or listen and that it makes you concerned for other techniques at this nursery. Personally if there is no agreement in writing to cease toilet training for your child within the week I would report to OFSTED if there is no option for going above the manager.

Good luck!

Oh and for the DLA forms make sure you put in for mobility as well as clearly your child cannot function safely along roads etc. like a typical child. And make sure you write about the worst day, never the best days. We have discovered over the years that the DWP will want to pay the very least they can get away with even when you have a genuine need. We did the forms online btw so we could save the PDF and come back to it.

Good luck OP!

The parents whose children joined us a year or two late, because they really wanted their children to try mainstream, always said they wished they'd sent them to us at the beginning.

It's natural for parents to hope that mixing with mainstream children will bring their severely autistic children on in some way, but I'm afraid that very rarely happens. I think you're doing the right thing, and it's odd that the nursery manager is suggesting mainstream.

For those than can manage mainstream, special first and then mainstream when we're confident that they're ready, is far more successful. We moved several children to mainstream, whose communication and behaviour developed with us. So it's not a forever decision if things change. But failing in mainstream at five or six is very distressing.

@saraclara

Good luck OP!

The parents whose children joined us a year or two late, because they really wanted their children to try mainstream, always said they wished they'd sent them to us at the beginning.

It's natural for parents to hope that mixing with mainstream children will bring their severely autistic children on in some way, but I'm afraid that very rarely happens. I think you're doing the right thing, and it's odd that the nursery manager is suggesting mainstream.

For those than can manage mainstream, special first and then mainstream when we're confident that they're ready, is far more successful. We moved several children to mainstream, whose communication and behaviour developed with us. So it's not a forever decision if things change. But failing in mainstream at five or six is very distressing.

Completely agree i was one of those parents who wanted my severely autistic child in mainstream, but the mainstream school made it very clear they couldnt cope with his need and he wento a special school from reception , seven years on hes just started his special needs high school, hes very happy and its suits his needs perfectly.

I think you should consider a different nursery. I also have a son with ASD who is not toilet trained his nursery has been helpful we send him in pull up because it is easier for them to change a pull up than it is a normal nappy.