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

Sorry to make the same point again but I feel really strongly about your last point about parents coming into change kids. It’s incorrect and schools cannot and should not require it. It is directly contrary to DfE guidance on managing medical conditions in schools, likely amounts to disability discrimination, and adds a highly unnecessary amount of delay into getting a child into clean clothes in a quick, dignified way.

Also, parents of disabled children are allowed to do things like have jobs.

@MamaLlama123 you need an intimate care plan but it shouldn’t involve you needing to be there. Bladder and bowel uk have some excellent guidance (on both guidance for schools and supporting more complex kids to gain continence)

You sound like a great mum - continence issues are really hard.

If you are on night shifts who is looking after him?
Surely you can still do that. But he will be in nursery not school by day and you still work at night.

no, school won’t allow you to sit in the classroom rest to change a nappy.

The problem is most of the time due to not having enough staff to change a child. Teacher on their own with 30 4-5 year olds. TA only there a few hours a day due to budgets or deployed elsewhere due to staff shortages. Who is going to change the child?

My DS was 4yrs, 3 months when he started school and was not reliably trained (he was later diagnosed with autism).
A couple of things we tried are-

Training on a toilet with a seat insert and step rather than a potty. The reasoning was that mummy and daddy don't use potties.
Seeing us using the toilet.
Now this seems weird but get your DC sat on the toilet, give them a glass of water and a straw. Make a game of trying to blow a bubble big enough to top the beaker. Apparently it's using the same diaphragm muscles as are used when pooing.
Increase water intake to stretch the bladder and to ensure poos aren't too dry and getting stuck. (It will also help when night training).

That’s up to the school to work out with the parent via an intimate care plan. EHCP funding would help. But my point is requiring a parent to come in is not a legal solution according to DfE. I’m sure for some families it’s fine and it works but for other scenarios it won’t and legally can’t be required.

In my experience of a primary school, we would have changed your son.

You need to have a conversation with the school.

Fingers crossed for you.

Another teacher. Yes I have come across such cases as your sons a number of times. I have never blamed the parents.

I do get frustrated with parents when school puts in the garden work of potty training and then parents put them back in nappies over the summer holidays 'because it was easier'. That is a completely separate and non-related issue form your situation.

Yeah this is clearly not a ‘lazy parenting’ scenario going on. He has complex medical needs and it isn’t his fault, or yours. My son suffered with this to a much lesser extent and the TA was always happy to change him, he actually wore pants but would often leak into them a bit. Thankfully he grew out of it after the first year or so of school. Speak to the school, see what they can do. If they aren’t forthcoming with help then deferring might be the best option for everyone.

I dont think your situation is unusual. I pretty much had the same issue with my daughter, she would not go to the toilet, tried everything and nope, no potty, step for the toilet with the smaller seat, it was tough. My mum said why dont you try putting her pants on before the nappy and the feeling is there rather than soaking in. It actually worked..gave her the feeling that she needed to do it in the toilet rather than her pants, it was only about 2 weeks with that advice and she was using the big toilet. 100% worth a try. ❤️

That is an awful situation to be in. I would do everything you can to defer him for another year. For his own sake.

@MamaLlama123 if you're on Facebook try Children's Continence Support - Parent Group. I have no experience but know the parents that set this up after struggling to find support for their child's continence.

Hi - my DD is autistic and while she has some bowel stuff going on, we didn’t face this one.

A couple of thoughts - firstly about school deferral. It wasn’t an option in our day - it came in a couple of years after DD started. I’ve always felt if I’d been given the option to defer I’d have refused it, and it would have been a mistake. This is because I would have confused DD’s milestones (knowing her shapes and colours, knowing some phonics which at the time was not something started until Reception) with being school
ready. The social piece is so important and I didn’t know - until school - just how underdeveloped she was, socially.

Secondly - in an environment where it’s become socially acceptable for kids to start school in nappies, you need to start strong if you are going ahead with reception in September. Prepare two packs of info for your school - one for the SENCO and one for the class teacher, with letters etc showing this is medical. As part of it write a covering letter explaining this is a matter of constant faecal imcontinence, not a lack of parental will to potty train. Be very clear you appreciate this is unusual. Do not let them bracket you with other kids in nappies. Pick them up on it every single time they say things like “it’s not unusual nowadays”. Being a SEND parent in school is very hard work. If you’re sending him this year because you think it will be easier than nursery, I don’t think it will.

@Criminetly No it doesn’t; at all, but we’ve talked to the school, the LA, and a solicitor, and it seems that while it against a lot of guidance and counts as discrimination, there’s not actually any fast path to fixing that. The school are apologetic but say they don’t have the staff or the training. The LA say the school should find a way but they can’t offer an alternative, and unfortunately my council is one that has been in the media a fair bit with their view towards additional needs… they end all communication with that if the school can’t accommodate him and we can’t make his situation work with the “standard expectations” at this age, we should fund alternatives.

@MamaLlama123 You won’t be able to sit in the classroom, no, but you wouldn’t want to either. You mentioned being concerned about teasing and having your mum with you all the time would single him out hugely.

As he’s summer born, he could carry on in preschool, I believe? Would that solve your childcare issue?

It seems this is a long path even without the ASD to account for too. I’ve felt absolutely hopeless at several points. Adding school in too would have been insane; it’d have tipped it into absolutely unmanageable.

I guess they might let you sit in your car on site and come in but if it’s going to be hourly, he’s going to miss so much learning anyway, and you’re not going to get much sleep.

If there is any way you can go private, do it. We also had problems due to ongoing constipation and as it turned out movicol and others taken on medical advice made it worse. I really wish we’d gone to a paediatric incontinence specialist earlier.

Your son is probably is still impacted and yes I’d be pushing for X-rays to know as you can’t start the process until he’s fully cleared out.

It then takes a long time for the bowel to regain sensation. And I mean a really long time. We did three sits a day on school days with a book and four on weekends. I put my back out from all the sitting on tiles! Lots of little accidents along the way.

I think it was honestly one of the most stressful two years of our lives getting through it. Never, ever would I have thought I’d spend so much time thinking about poo! However we are through it, and DS himself knows he must keep his fluid levels and fibre intake front of mind, given that tendency to constipation remains.

I your circumstances it’s a medical condition, I would be getting information from your gp and any specialists, chase up the referral to see if they have cancellations to get in earlier and write to school and Lea explaining the situation and how it needs to be handled. It may be something they can handle with current staffing but they may need a echp in place with attached funding, the quicker it’s applied for the better

Please don't worry about the judgement of others. Your son has a medical condition which is why he's not potty trained - speak to the school, they will have dealt with this before and together you can make a plan. Don't be embarrassed or ashamed, you are your son's advocate and you know him best. It sounds like you're putting in plenty of effort to resolve the problem and you will get there 💐

Ex teacher

yes I have seen this before.

it is common with children with ASD that they take longer to train. Some only a bit longer some much longer.

this is clearly not a lazy parenting situation.

i can’t advise on deferral, but in similar situations at my school we sorted out changing.

talk to the school.

i’d also suggest an EHCP. School may also suggest this.

@LittlePetitePsychopath solidarity - we may well live in the same LA! I’m really lucky, our school are exceptional and pretty well resourced, but my god early years and everything involving the LA was an absolute fight. I hope you get to a solution that works for you and your little one eventually.

Well the situation is unusual but not unheard of. I’ve come across 1 child with very similar needs in my 25 years teaching. And I agree that the situation with your child is vastly different. Your child is going to need a lot of support though, how much do school know about him?? Have they been given time to prepare properly. He sounds like he needs an EHCP.

You've been trying your best to support your child, that's not lazy parenting. As a SENCO myself I'd urge you to book an appointment as soon as term starts with both the reception teacher and the SENCO. I'm surprised that the school aren't already aware, toileting is one of the things our EYFS lead and I always ask in the preschool visits. I'd also say an EHCP on medical grounds should be applied for as soon as possible. But be aware an EHCP can take far too long to be granted, you may need to be prepared to take the local authority to tribunal.

As a parent of a SENDs child - defer. This is unlikely to end well. One teacher, 30 kids, no budget. Yes theoretically schools are supposed to support. Practically they can’t. Either your child won’t get changed ( especially not every 2 hours!), you will end up with a reduced time table in no time, or even exclusion.
Changing a child in primary school generally means they change themselves with some supervision. And maybe once or twice a week, not every 2 hours. There is no personnel to do this, and your son will loose out.
defer, get an ehcp as soon as you possibly can, and the try again.

OP your situation sounds really hard and you sound like a great mum, trying the best for your child.

It does.really seem like.deferring in this particular case would be by far the best option for your child. A year to potty training and be school ready with communication too.

Why does having your son in nursery mean you can't work night shifts? I'm confused.

nursery can’t take him once he’s school age. Sometimes i look after him following night shifts now eg during holidays. But nursery enables the sleep after night shifts for most of the year

If i had to work a night shift then attend school 1-2hrly throughout the day then there is literally no rest. Also looking after him at home for a full year with literally no school/ nursery/ childcare whilst also working nights would be hard. I would just barely sleep

Working days wouldn’t really be an option if there is no school/ nursery either. So i’m quite confused how i’m meant to work in a way that is sustainable

@MamaLlama123 it's a real pity your local authority Early Years service haven't been involved much sooner given the developmental delays aside from the medical issues.
Honestly, mainstream school from Sept without any preparation or support plan is going to break down very quickly. He isn't statutory school age until the term after he is 5.
I'd suggest you get in touch with your LA Early Years Officer ASAP ( your health visitor should be able to help), and potentially keep him in nursery for another term with a view to getting a support plan in place for school admission in January alongside an EHCNA.