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.

Does he show any signs of awareness of his toileting bodily functions? eg when he was pooing in his nappies, did he turn away, hide, go to a particular spot, crouch, or stop what he was doing and stare into space?

Can he signal a need or desire to you, eg for a nappy change, or to access the toilet. Doesn’t have to be with words- would he tug you, stand by the bathroom door, give you an object. Anything like that? Or is he completely reliant on timing?

@Sprogonthetyne suggestion of going starkers in the garden has a lot of merit. It’s a really good way to take the stress out of it for you for a while and you also pay attention to things like the natural schedule of his toileting - maybe he poos at particular times of the day, or wees 15 mins after a glass of water, or wees every 30 mins. It’s a great way to get more information about what’s going on for him, his awareness. And for him, it can be a really great way to understand what’s happening without the hindrance of clothes, and things happening behind him. It helps make the connection between his interior sensations and the exterior actions. Once that awareness is there, it’s easier to add in the actual toilet. But sometimes all the sensory excitement of a bathroom (cold floor, weird half seat, sense of balance, loud noises, water on skin) can be too much distraction and interferes with the very subtle interior signal he actually needs to tune in to.

You writing "because it is" isn't fact. Your post was disuasive and argumentative and while you may not have wrote "do not do this" you were impacting the OP by providing arguments against doing so. Many parents as i'm sure you know have to at least initiate the tribunal process at least once and having an over arching view in the process is good practise. If tribunal can be avoided with the outcome that is required great but it's always best to plan and get as much documented as possible incase that has to occur.

The advice to request the autism assessment to be completed as part of the ehcpna is sound given the statutory requirements of LA's. Not completing it does mean the LA hasn't fulfiled their duties. If you haven't argued for this successfully or haven't been able to give appropriate arguments for it to be ordered then that's not mine or the OP's fault.

Op, as this thread shows there are many people and places that you can get advice onehcp's and send. Some such as SENDIASS are not always fully independant and some advocates aren't always the best call either.

Ipsea and sossen are well known within the send community and offer legally based advice. Please check all advice you're given on social media as a general rule. It's likely good advice but you never know peoples motives.

I would defer school for a year if he is summer born and focus on getting an EHCP so he can have proper support in school. Don’t send him without one, it’s not fair to him.

At no point did I say or imply OP shouldn’t do anything. Don’t lie.

Neither did I say I have never successfully argued for an ASD assessment. Again, please don’t lie about what I have posted.

It isn’t fact as in it isn’t law, but it is true that very few EHCNAs include diagnostic ASD assessments even where parents make the request to the LA.

Yes, many have to appeal at some point. That is completely irrelevant to my original point.

BTW, I am neither an advocate or part of SENDIASS.

When I was working we did have younger dc with a “statement” of educational need. I have to say the labels were not used back then. We are now obsessed with them. It’s not addressing the educational need though. It’s just a label and a reason why he’s behind other dc. It’s not addressing his education and an EP needs to be involved and qualified nursery staff really need to help more.

The LA have a duty to assess and detail all of the child's SEN, how do you propose they do this if the child is still waiting to be assessed? They can't and while the diagnosis is a label as such, the diagnosis assessment is very telling about the needs of the child and if the child doesn't receive a diagnosis it may highlight other areas of need.

Your posts have illuded to the above comments, in the same way I never said you worked for sendiass or was am advocate or are you telling lies?

The thread is about getting the OP some help which she clearly needs. Your posts may quote regs verbatum but some don't help.

I haven’t said, implied or alluded to any such thing. You are making that up. I haven’t said the LA shouldn’t assess. I said it was unlikely. They are two different things. Try reading and comprehending what I actually posted rather than what you want it to say or what you incorrectly think it might say.

I haven’t quoted the Regs verbatim. Besides, if you are meaning I pointed out the test for an EHCNA doesn’t require one to prove an EHCP is definitely needed, then the test for an EHCNA is set out in the Children and Families Act 2014 rather than the Regs.

I didn’t say you did say or imply I was an advocate or work for SENDIASS. I was just pointing out I wasn’t.

I'm not making anything up, you reread the thread. You were argumentative against op requesting the asd ass as part of the ehcpna, if you were supportive or in agreement why comment?

Your reply in regs to wrking for sendiass or as an advocate was in response to my advice to op saying she shouldn't always trust their advice. You assumed i was writing about you and responded otherwise why randomly post the BTW comment at me?

You seem to be very focused on responding to my replies which you seem to broadly agree with rather than helping the op.

I have not said, implied, alluded, argued or anything else you want to add that the LA shouldn’t assess. You are making that up. I said it was unlikely. That isn’t the same. They are two different things. I posted because it is unlikely.

No, I didn’t assume that. If I had assumed you thought I was an advocate or working for SENDIASS, I would have said you were wrong about that rather than just pointing out generally on the thread that I wasn’t.

I have posted advice to the OP. So you are wrong about no posting advice to help her.

Again why even comment (repeatedly) on my advice. It is in your opinion that it is unlikely, that isn't the same as it being unlikely.

Why would you even think i'd be interested in where you work as a direct comment to me and in reply to my post about SENDIASS and advocates if it was broad generalisation?

I didn't write that you didn't post advice, i wrote that you seem more focused on responding to my replies than helping the op not that you didn't give her advice.

If you want to be told your right, go ahead and be told your right. Your points/ argumemts seem very random especially as you seem to agree with me broadly?

I originally commented once about the content of a post you posted. Then, other than one post and this post, all the posts I have posted in relation to you have been directly replying to posts where you have directly quoted me. Of course I am going to reply to posts that quote me. Particularly the posts saying I have said/implied/argued/alluded/[insert anything else you want] something I have not posted. Not more focused on you. Not focused on you at all. Merely responding to posts that quote me. Not random if you actually read and comprehend what I posted rather than making things up or thinking they say something they don’t. It isn’t about being ‘right’ .

Yes, my opinion. Just like you posting your opinion. I have already said it isn’t law.

I didn’t say or think you would be interested. It was a wider comment at the end of a post on a public forum. You might think only you reads the replies, but it is a public forum with other people reading. Yes, others even read replies where the rest of the post is about the quoted post.

I haven't made anything up at all. As previously stated your comments are argumentative and I have have replied to them. It does seem that you have a need to be right, especially since you continue even when I've posted that it isn't in op's interests as the thread is about helping her, you even replied when I posted that I would leave the thread, that is argumentative or trying to have the last word (colloquialism).

You were addressing the post to me, replying and added "BTW, I am neither an advocate or part of SENDIASS." That isn't a broader comment. Your reply was in the same vein as replies I had made where you had called me a liar. When I asked if you were telling lies (sarcastically in the same way) as a rebutal you decided it was a broader comment. - this is because yes I do realise other people read the thread and some won't read previous comments.

Going to really leave this thread now as amusing as this is, it does mot help op and it's a waste of time.

Be right if you need to, that's ok.

OP- please use ipsea and sosssen just double check all advice you get. It won't hurt but may really help.

You have made up that I have said/implied/argued/alluded that OP shouldn’t ask/do something that helps. Nowhere have I done that.

Replying to posts that quote me isn’t being argumentative, wanting to be right or wanting the last word. Yes, you have replied to my posts. Just like I have replied to your posts. Posting you would leave the thread doesn’t mean others can’t still reply.

I didn’t just decide it was a broader comment. It was a broader comment. I didn’t feel the need to end one post and immediately start another just to post one sentence. People on MN regularly reply to one poster then carry on posting broader comments within the same post. I am sorry you don’t seem to be aware of that and think everything is aimed at you.

I had my younger child assessed and diagnosed due to a request made in the statutory assessment process. The LA and NHS work closely - in fact the statute says they must - if you appeal (hand-in-glove, in fact) but often claim otherwise when assessing. They absolutely do have the power to push in terms of waiting lists: again, we are proof of that. It's how my child was diagnosed when she was.

I pointed out that being on the waiting list means it's a reasonable request, and in the end the LA did apply pressure to the NHS in waiting list terms. It worked. It may be rare, but it absolutely did work for us, and is worth trying.

EHCPs must, by law, summarise all needs in B and set out any medical diagnoses alongside a summary of all the child can and cannot do - there's caselaw for this. Any medical needs affecting learning in any way must be in B, alongside provision that either inherently educates or trains in some way in F V(which can be physically or emotionally - loads of therapies go in there) or renders the learning, eg loops or a smaller class size. And autism hugely impacts a wide range of learning needs, so it's arguable that that assessment is important for SEND.

It may not work. But it is absolutely worth asking.

Oh, and on toilet training: I don't think it can work unless the interoception is there. My younger one just didn't get it, no matter what I did, until one day she started to, and she explained quite calmly that she "got a tingle that said I needed to go now, and I never used to know until it was too late." She had no urge or sensation, so it was literally not in her control. She was reading long before she was out of nappies. I think adjusting expectations and realising that delays impact sensation and it's not feasible for a child who doesn't register what is happening in their body yet to control that would have helped me a lot. I was desperate to sort it and felt the worst mother in the world, and I think I must have put a lot of pressure on her with all the books and potties and ladders for the loo etc etc etc. when none of it could have helped, because she just was not developmentally ready.

Lots of kids aren't out of nappies by school. For significantly disabled ones, it's almost normal. I agree that starting the statutory assessment process is a really good idea and always recognise appeal is most probably wise if you meet with rejection, because 99% of parents win. The threshold to assess, especially, is very low.

I am really concerned about the nursery declaring that they “don’t do” EHCP. That sounds all kinds of wrong to me. At this stage, I would look at IPSEA for advice on applying for EHCP.
The nursery will need to provide reports and evidence and probably meet with the needs assessor to discuss how your child is functioning in setting and what his needs are. Nursery may need reminding that by the SEND code of practice (from which they are not exempt), they have to support your child and be planning for his specific needs.
Before speaking to professionals, it would be a good idea to have in mind all of the ways you support him beyond what other parents have to do for their children.
I hope this helps.

DS was mostly non verbal at that age, using PECS in a very limited way prior to Reception. He was diagnosed with ASD in Reception, referred for assessment while in nursery. He was not expected to be fully toilet trained, the TA provided support. School cannot refuse this care, it would be disability discrimination.

We worked with the specialist HV to toilet train, she gave us visual prompt cards, school used them too. She works with children with disabilities in our area, HV referred us. What worked with DS eventually once he became aware of being wet (we would point out he was wet and he began to associate) was a social story for school with actual pictures of the school toilet. We had a separate one for home and the home toilet. He also loved Bing Bunny and we had a book about using the toilet train that he loved reading (I think there is an episode that also covers it). It took time, pooing on the toilet took longer and lots of praise and tablet time as a reward for sitting on the toilet long enough. For poos you have to sit them on the toilet 15-20 mins after eating consistently as that is when the gastro-colic reflex is initiated and the chance of the body evacuating is highest. Once you have one success you can positively reinforce it.

All Aboard the Toilet Train!: A helpful potty training single-sound board book for chidlren ages 2 to 5 (Bing) https://amzn.eu/d/0iM9Jn0N

Yes. EHCPs are not optional for any setting - if they don't want to do them, then they're in the wrong sector!

Just to point out, I wasn’t saying it isn’t possible or not to ask, just unlikely and more often than not LAs decline to do so during the EHCNA these days.

@NC2125It’s the role of the nursery to help here. They should be part of the assessment process. Make sure you look at LA info on deferring school start too.

Yeah, I should probably say here that in our case it was prior to Covid sending EHCP applications soaring, and I had an amazing caseworker who twigged that my child was drowning. That caseworker sadly left a year later - I can't help thinking because of the pivot to brutality by our LA, with a new manager.

My experience several years ago may have very little to do with what happens now.