My 4yr old is still in nappies.. Support please

[MamaLlama123]

My 4yr old boy is still fully in nappies and should be starting Reception this Sept. Im quite anxious re this following comments on another thread

He has had chronic constipation since weaning which was not medically managed well. Since age 2 - he attended 5days per week in nursery. At aged 3 - nursery advised me he showed no signs/ anwareness and was not ready to potty training. At this time - he was having 5+ stools per day although appeared otherwise comfortable. A GP assessed him as having constipation and prescribed him laxido to be given as needed.

It has come to light now that he actually had retained stool despite the laxido. He was advised disimpaction doses x8 laxido per day then senna added

We were referred to Hospital who did bloods - all normal. He now has 30mg senna and GPs recently advised to reduce the laxido to 2-4 maintenance dose sachets per day and to not stop this

The GPs advise he is now outside their remit. He has been referred and accepted to a children’s continence team - the waiting list is 18weeks.

The stool comes out of him continuously - Meaning approx 1-2hrly nappy changes and there would be stool in every nappy. They vary in consistency from firm to watery.

He is suspected to have ASD and is delayed generally in other areas especially communication. The Hospital Doctor indicated his bowel may be stretched by his constipation and the brain- bowel signals may be affected, associated with his autism

I am quite concerned that he will be laughed at/ bullied and also now that teachers are not going to be able to support him and change his nappies - following reading a recent thread

Is potty training him feasible by September? He still doesn’t have much awareness - and there is stool/ soiling in his nappy hourly

Would appreciate support from anyone who have been in this situation

@MamaLlama123 you’ve bern let down by your LA quite significantly. You really need an ehcp for what looks a 1-2-1, given toileting issue sand delay.
Try to keep him in nursery for as long as you can and contact the senco of the primary school and local sends groups (usually on facebook). Primary schools can not support hourly changing!

Have you spoken to the school about it? A plan needs to be put in place before the school term starts if he’s starting in September. He’ll need a care plan and to make sure there’s staff in his room who are able to change him, unlikely the teacher will be able to as there’ll be a class of 30 children that can’t be left.

OP, you have received some great & also awfully inaccurate advice on this page.

Your situation is that fully training your DS agead of September is unrealistic, though of course keep trying.
GP services are woeful in this area and Incontinence teams very overstretched.
The medical needs you have described alongside other developmental delays form a firm basis for an EHCNA application, I would make contact with your LA SEND team now and copy in the school, so it’s clear you are being proactive in terms of school transitions.
It is unlawful for any school to request parents to attend for the purposes of toileting needs, the school will need to apply for funding for support, pending an EHCP.
Don’t be fobbed off with any “there are no funds”, this is what their annual notional budgets are for.
in terms of immediate support, contact this organisation, they are brilliant for guidance on what csn & should be done for children with continence issues.
https://eric.org.uk/

Best of luck 🤞

Just to reassure that at my school we'd change him, no problem. You'd not be called in. Noone would be missing out, I'm support staff. Supporting kids to be enabled to be in school is literally what I do and that's all this is - makes no difference to me if someone needs a change or a sensory circuit. I'm certain because it'd be me who'd be doing any changing at ours. Have you spoken to the school about it?

I can't offer advice beyond this, but wish you both well on this journey.💐

@MamaLlama123 the people to talk to about this are his school, at my school he would be changed regularly by the staff ( I admit I’d be thinking how will we manage it) but we always do. There are other schools near to ours that flatly refuse to change children. Without knowing the answer to this, it will be hard to make a plan. Was this not brought up during his transition meetings/visits? Have you spoken to the school SeNCO?

Ignore all the stuff about cheery potty training books; have you tried putting pants inside the nappy; you should have started earlier. And about private schools - they won’t take in-potty trained children unless they are SEN schools

You are in a very different position - I do feel for you. He is in effect continuously pooing so is fundamentally incontinent, so clearly can’t possibly be toilet trained by September. This is a medical issue (plus possibly an autism one, but the physical issues are a borer before you even get to that). I don’t know what the angles are to get into any continence services there may be near you but I think you need to speak to the school asap and start marshalling resources to access Sen support for the issue.

juat trying to potty training and then turning up unflagged on the first day isn’t going to be a viable strategy.

@AwwShucksOhWell you would change him hourly? I completely agree, that should happen- but it means a TA is gone for 5-6 times 15 minutes every day. Your school is very lucky to have these resources, i wish many more did.
Many don’t have any TAs in the afternoon, and only 4 days per week in the morning for Reception and KS1. It just wouldn’t be possible, with several other sends children in the class.

It's not your fault OP. I've been through constipation issues including hospitals etc and it was incredibly stressful. I am not surprised he's constantly pooing if he's getting a high dose of laxatives each day, I would be too. Presumably at some stage he'll be weaned off them, do the doctors have a plan for that?

Thanks for explaining. I'm sorry you’re in this situation.
Maybe a childminder would have helped but it's arguably too late for a change of plan.

I do really feel for school staff having to change nappies as imo it shouldn't be their job but your son has a difficult medical problem and he needs real support. I really hope it works out for you and the right plan can be put in place asap. It's not viable fpr you to be called in to change him either.

You need to defer his school place, he will stand out as different to all the other kids and these things get noticed. My youngest granddaughter is 6 and she often has tales to tell about a child in her class wearing nappies and stinking the class room out when they poo.... kids don't mean to be, of course, but it's still cruel. And will just set him back even further.

In all kindness, school isn't there for childcare... it's there for children to learn.

What conversations have you had with the school so far? Are they aware of your DS’s areas of delay, possible ASD and continence issues?

Has the nursery discussed applying for an EHCP? If not, they really should have done. I suggest you contact your local SENDIASS organisation and ask for their support. The IPSEA contains standard letters that you can amend to put I. Your own parental request for an EHCP.

When was your DS 4? If it was anytime after 1st April, would you consider keeping him at nursery for another year while you deal with the medical issues and sort his EHCP?

I contacted ERIC after reading this. They said that the law and what actually happens are very different, unfortunately, and that the advice we’d received from other charities was correct. Unless the school has provision to change them; it’s unlikely it’ll happen.

Maybe OPs school will be better equipped but I’d be surprised if you can get an EHCNA in August for a September start; and then have it staffed.

Yes and it also depends on if they have staff willing to do changes, it’s usually not in job descriptions unless specifically hired for SEN. staffing will already have been sorted for the September term start and it’s the middle of the holidays so unless the school were told about this before summer there’s not much they’re going to be able to do now, it’ll have to be sorted once school has started.

It sounds like he is constipated and the constant stool is over flow possibly?

Does he have a 1-1 TA lined up when he starts? She may be able to change him but it’s likely you’re going to get called in to change him, at least in the beginning.

If he has ASD no one is going to think you’re lazy. Let yourself free of that thought.

@LittlePetitePsychopath you could look at a pre-action letter if you haven’t already. Lack of staff, funding, resources and training are not lawful excuses and the LA should not be suggesting you fund alternatives. Also, has an EHCNA been requested?

Why have the nursery said they can’t take him after September? All children are entitled to funding until the term after their 5th birthday, which for summer born kids mean they should have a whole years funding.
we deferred our little boy who has asd and was delayed with toilet training and I’m afraid it was the best thing we could’ve done. He’s getting there with the toilet training but it’s a long road.

I'm not experienced with constipation but is the aim of the current medication for the stool to be constantly flowing all the time?? Because that seems strange to me and of course it will be impossible to toilet train.

I did have an autistic 4yo who wasn't toilet trained before he was due to start school and had already decided well before that to delay his start to the following year. No issue with staying on at preschool. But you're not obligated to do that if you prefer him to start school. What I would do if you haven't already is meet the SENCO and get an intimate care plan in place.

This is what makes this kind of thing (thread) so difficult. In the case of this child, with the correct information and planning schools could put support place to meet this child’s needs. BUT you can’t just turn up in September with a child who needs hourly nappy changes and is developmentally delayed. Schools do not have the staff, equipment or training to manage this. A child with these needs has to planned for.

If you formally defer your child’s school place, then they will be able to stay in nursery for another year. Children receive funding until the start of the term after their 5th birthday.

The deferral means that your ds would stay with his new yeargroup moving forward. You would just need to confirm that it is for the ‘life of his education’ to ensure that he doesn’t have to skip a year at the end of primary school, for example.

I would recommend speaking to his nursery and also contacting the school admissions team and inclusion team at your Local Authority to discuss deferral.

So I have made a plan that I will defer

What next?

I am very worried that his 18 week continence waiting list going become longer than this.

He was accepted onto an Autism waiting list at age 2. We were advised this would take 6 months and this is now over a year ago. What happens if I continue to be left unsupported and the 18 week waiting list becomes a 40 weeks waiting list (like his ASD waiting list) and then towards age 5. The health visitors and GPs don’t even seem confident in their advice of what to suggest and have told me he’s out of their remit

So he will go to nursery? You need to go to them and get them to support you in starting the process for an EHCP. See where that gets you. My biggest advice for when he does start school is to contact school early. Make sure that they know his needs as soon as possible so they can plan to support him properly.

I think you need medical support/advice to reduce the laxatives until he has regular soft stools rather than constant flow.

Of course he does have a right to be there.
But - he is also developmentally delayed and incontinent - and very few schools have a spare 1-2-1 TA available for him without notice!
I’m surprised about the number of people on this thread where schools just have these resources (5-6 messy nappy changes a day!), it is very unusual.
Deferring and pushing for an EGCP (and engaging with school well in advance) has a much better chance of a successful school placement.