How do you toilet train a toddler with speech delay and possible SEND

[NC2125]

I’m at my wits end. Please do not judge.

My son has speech delay, awaiting autism assessment and will be starting school in September where he has to be toilet trained. I’ve tried and tried but he doesn’t understand it.. there’ll be wee all
over the floor. At home I take his nappy off and ask him to go toilet every 15-20 minutes. In nursery he has started going without a nappy and he’ll wee himself and not tell the staff. When he sits on the toilet he doesn’t point his penis down so there’ll be wee on him and the floor (that’s what the nursery staff said).

I’m
at my wits end and don’t know what to do now. Please advice.

Yes, if he is summer-born. When will he turn 5?

It’s very difficult and very stressing.

We have a GP appointment in 2 weeks. Which assessment do you refer to?

Has he had a one plan at nursery?

Just to add my ds did an extra year in nursery but is summer born. We had it put in his ehcp that he was to stay out of chronological year group for the rest of his statutory education - this is important as they can make them miss year 6 and jump straight to high school or start primary in year 1 instead of reception.

Get on to ipsea and sossen websites re ehcp needs assessment. Ipsea has template letters you can use.

I would definitely get the ball rolling with an EHCP assessment. Ideally his pre-school or nursery should have started the process, so first step might be to take with them, but of they arn't suportative you can apply directly to the LA.

What support do you think he will need in school, apart from the toileting? Will he understandand be able to followinstructions? Will he cope with the sensory environment of the classroom? Will he need visual communication or use signs?

I'd also ring the school and ask to talk to the senco asap. The meeting at school next month will be more of a general hello, but not really the place to talk in detail about needs (you don't want to discuss your kids toileting in front of hundreds of other parents).

Its not acceptable for them to call you every time he needs changing so don't be getting bullied into that. If they have concerns they can support your ehcna application.

ipsea has excellent advice and guidance https://www.ipsea.org.uk/ehc-needs-assessments you could literally email your local authority now and get the process started.

I work with a child who is non verbal. He is kind of potty trained in that he can hold but he won't tell you when he needs to go. We take him every hour. If he's had a large drink I take him after 30 mins. We use a sign for the toilet and a picture but he's never used it back. It took quite a while to get to this stage but he's gradually learned how to hold and he hasn't at himself for months. I think it takes time but it is possible with patience and a lot of co ordination between home and school. He doesn't point his pennis down. He just leans forward, which automatically puts it in a more backwards position.

I would definitely start now, even if it's very slow and not looking like potty training is supposed to. We kept thinking 'he's not ready' but his mum was right and he's in a much better place to start school in Sept now that he can hold. School will soon work out he needs to be taken every hour or they will have a mess on their hands. Your son will eventually get there or at least be able to hold it in better. Just keep persevering in putting him on the toilet.

Look up local council parent partnership and contact them.
See if there is local parent group and sessions to attend
Best info is from local parent groups

Thank you everyone for the replies.

There’s so much information here that I didn’t know anything about.

He will be 5 next year in May and I’m seriously considering delaying him starting school this year. Is that an option? Would there be nursery funding untill he’s 5 or would I have to pay myself?

The nursery has never mentioned EHCP. I will ask them.

We have spoken to the senco and she said she’ll meet us at the school meeting next month.

a family member of mine waited it out with her non verbal autistic daughter, her child went to school in nappies and eventually she started using the toilet with encouragement but not strict training and then is now completely trained at just nearly 6.

And go for nursery. A structured day is great for our kids with asd and they can signpost to services make referrals

And look at local SEN schools too .
Dont delay school .

try and space out time on the potty or loo, ideally it should be no more than every 2 hours. You don’t want to encourage lots of little wees as the bladder needs to fill and empty properly. It might mean lots of initial accidents though but more likely he will get the feeling of needing the toilet rather than trying all the time anf occasionally ‘catching’ a wee or poo.
also need to ensure a good fluid intake over the whole day, again it seems strange but it helps the bladder fill up and long term helps the bladder capacity for longer gaps between the loo.
little tricks like wearing pants inside a nappy to feel wet and associate this with needing the toilet but have the security of a nappy can be useful when out and about.
avoid dark coloured drinks as they can irritate the bladder.
there will be lots of other children having accidents
make sure clothing is easy to remove for toileting when at school.

ask him to go toilet every 15-20 minutes

He will never learn what a full bladder feels like if you do this. And he can't learn continence if he never learns how it feels to need to wee.

Speak to the school. They’ll either ask you to sign an intimate care plan or they’ll call you in to change him. I panicked about this too and was expecting to have to go in to change him, but my child’s school changed him and he didn’t get an EHCP until later which stated needed help with personal care.

As his birthday is in May, you can apply to defer his Reception place until September 2027.

Presumably you have already accepted his school place? Your first move is to make an appointment with the Headteacher as soon as possible and ask to defer the place. It’s not an automatic agreement - you will need to give your reasons why it is in your son’s best interest. Given what you’ve said, it shouldn’t be an issue.

Make sure that the place is deferred ‘for the life of his education’. This means that he won’t have to return to his chronological age-group at any point.

With regard to nursery funding, as far as I know you will still be eligible for nursery funding. For confirmation, phone your Local Authority NEF funding team.

Next, speak to the nursery and ask them to apply for an EHCP. If they refuse, look at the IPSEA website for information about how to put in a parental request for an EHCP. SENDIASS is a voluntary organisation which supports parents of children with SEND to navigate the SEN system. There is a SENDIASS in every local authority.

I can’t comment on potty training tips, but just that I have a 4 year old in nappies. We self referred the EHCP process and she does have one and it includes her personal care at school.

discuss it with the SEND team at the school. EHCP is unlikely to be done before September but school should still make adjustments, but they need to know before starting.

The school cannot refuse to allow DS to attend because he is not toilet trained. That would be unlawful. The school should not call you to chance him either. Have a read of the supporting pupils at schools with medical conditions statutory guidance. The statutory guidance is underpinned by the Children and Families Act 2014 and the Equality Act 2010.

On their website, IPSEA (a charity pp linked to) has a model letter you can send to your local authority to request an EHCNA. An EHCNA is the needs assessment you first request as part of the EHCP process. Speak to the nursery about it, but don’t let them put you off making the request.

Who referred your child because of speech delay, and who referred him because of possible autism? There surely has to have been some professional involvement so far.

My DS is the same, he will use the toilet majority of the time now but he goes to a SEND school where they are trained better to deal with toileting accidents, he still pees all over the floor alot of the time (he sits to wee too) is there any chance of putting in a for EHCP so you could send him to a SEND school?.
Edited to add: he does still have the odd accident at school but they change him.

Thank you everyone for all
the replies and sorry for the very late reply. It’s been hell with toilet training, wee everywhere! He doesn’t understand it.. I tried taking him every hour then every 2 hours, I will literally take him to the toilet then he doesn’t want to wee come out and then within 5-10 minutes a big wee on the floor. I don’t know what to do, do I give up now or carry on? In the nursery he has had 2 accidents every day as well.

I spoke to the nursery last week who said they don’t do EHCP, then I spoke to SALT who said she will refer to someone from the local authority who can help me with applying for an EHCP.

I don’t think he will be toilet trained in September, can I apply for a personal care plan/someone to change his nappy in school within the EHCP or what do I do?

Thank you once again for all the replies 👍🏻

DS doesn’t sound ready for toilet training.

Speak to the school. They cannot refuse to allow DS to attend because he isn’t toilet trained. They should not require you to go in to change DS either. DS will need an intimate care plan. This all applies whether DS has an EHCP or not.

You can request an EHCNA yourself now. On their website, IPSEA has a model letter you can use.

Be careful relying on the LA for information. They will tell you what they want you to know and their version of the law.

I would delay him if I were you. Your funding will continue. We did the same with DS, he was toilet trained just before his 5th birthday and the extra preschool year also gave us time to apply for an EHCP. He also has Autism.

If you do prefer him to start this year you need to inform the school that he is not yet toilet trained due to SEN and that you are working on it, but if it isn't possible by September he will need an intimate care plan. If it's a state school they will have to work with you, otherwise it would be disability discrimination. They may say they don't help children in the toilet but they can't legally do that when it comes to children with disabilities.

The key point in what you have said is “he doesn’t understand”. You can’t teach something he isn’t able to learn.

you mention a speech delay - does he have any speech at all, or is he non-verbal? Does he have other developmental delays?

You don’t need to wait for diagnosis to seek support. Some resources to try - early years inclusion support service, surestart, homestart etc.

Was mainstream school the option that you chose for him? Did nobody suggest that he might be more suited to a SEN school?

@scoopofmintchocchipicecream I don’t think he’s ready either as he doesn’t understand difference between wet and dry but I’m stressing about it because the school has said he needs to be toilet trained. We are meeting with the SENCO at the school in 2 weeks. I will look into EHCNA.

@UnbeatenMum I’m still considering delaying him a year. How did you apply for another year of nursery funding?
It is a state school, would they have staff who can help with changing a nappy or taking him to the toilet?

@PortSalutPlease he can say a lot of words but you can’t have a conversation with him. I will look into the support that you have mentioned.
The school has really good SEN support that’s why we choose it but maybe we should have chosen a proper SEN school? It’s too late now isn’t it?