AIBU to be angry at school so early in...

[misskellyb]

My son is being assessed for autism and a strong possibility of ADHD (can't assess yet as he's too young).

He has a lot of sensory processing difficulties. One of these being toileting. He has just started reception at a small, one form school and is still in nappies. He is on daily laxatives and regularly soils. Therefore he is still in nappies. He will not toilet train. If he wears pants (and sometimes even when wearing nappies - if he's in uncomfortable environments) he will withhold his wee and poo up until the point of getting so unwell he requires enemas at hospital or ends up with severe stomach pains from not weeing. When he has pants on he has a tendency to poo his pants with the overflow of poo and requires changing of his clothes and pants regularly.

He had his first day in reception yesterday. He had his nappy changed once and was introduced to the toilet but showed no interest in following his peers and using it. I'm hoping in time he will be comfortable enough to start using a toilet at school. However today, when we got home I noticed his nappy was still in his bag and his nappy hadn't been changed and was full of wee and poo. I will be raising this with the school tomorrow.

He also struggles with transitions, one of these being transitions with clothing. For example on a morning he for some reason refuses to change out of his pyjamas and will meltdown to the point that some days he has to stay in pyjamas. He struggles going from season to season changing from summer clothing (shorts and short sleeved t shirts to jumpers and trousers and vice versa). As you know it's extremely hot and he was left in his school jumper all day at school today. I confronted the school when he walked out in a jumper and The school said they asked him to change out of his jumper but he said no, so he was left to play all day in a wooly jumper with a soiled, wet nappy( I was unaware of the nappy being unchanged at this time).

As he does have additional needs I've asked the teacher if they will feed back to me regularly how he is getting on as his speech is somewhat delayed. The teacher said that they have 30 other children so this isn't possible. AIBU to be abit annoyed about this? I acknowledge their high numbers of children however surely for SEN children they can find a way to prioritise feeding back to parents, weekly, fortnightly, monthly? She said no news is good news so if I hear nothing all is fine. But the news that my sons nappy wasn't changed today and the news that he wouldn't change out of his school jumper is surely news I should be made aware of and not having to find out for myself?

AIBU to be annoyed they left him in a dirty nappy all day? Especially in this heat! They have a duty of care and this is just neglect. He will be prone to infections if this carries on and possibly bullying if other children smell or notice the nappy. The school have had multiple meetings with me regarding his needs and his continence issues. I spoke the school on his first day yesterday to make sure the reception teachers were aware he needs his nappy changed and support around toileting and they assured me this is fine. They also have clinic letters from paediatricians and the continence team outlining that my son will need regular toilet breaks and support around toileting and changing.

I try everything at home to encourage toileting. But toileting issues have been his whole life. We've tried everything and I mean, everything. To the point where no more reward charts, sensory toys, or bribery will encourage him and it's just a waiting game for it to be on his terms but in the process I don't want him facing difficulties at school for this and personal hygiene issues.

You'd think second day in they'd be on the ball as well and I'm just worried this is the start of problems to come.

Not for the EHCNA but it would be to get the funding so desperately needed to help the poor lad.

Also, with a parental request, we only have a limited time to respond to the request and provide all the necessary information/ supporting documents. If the school and the parent can work together from the start to write assess needs, request under the right grounds and level of support needed, there is a much greater chance of success. Especially as in this case, the school barely know the family.

Lots of this is like my DS, however he could never cope with mainstream and was diagnosed before this. However I still had a LOT of talking and negotiating to do with even the specialist school before he started school, and to be honest every single year since.

So what I’m saying is the sooner you get used to having to be VERY CLEAR (said in big letters, because I do have to spell it out so clearly to teachers/assistants) at the start of every year what my son needs and have a few conversations.

Even in a specialist school. Let alone mainstream.

It sucks to be honest, but it’s just the way it is. And I don’t know about you but I haven’t got enough fight to change the inadequate education system for SEN kids (because it’s not good enough, either in mainstream or SEn) and parent my child. Just not enough energy!

I actually hand in an A4 ‘this is what my son needs’ which introduces my son, confidentially to the teacher and what he needs and I have a conversation. Not that any really reads it. You have to pester and insist.

Basically you have to be THAT parent.

Toileting - And around your sons needs, he needs a member of staff that he trusts and is OK with changing his nappy. Talk about who it will be and how they will build up some level of trust with your kid, as it’s important that they feel safe with things like this and a consistent adult does this, not just anyone who is handy.

Clothes - I would recommend thinking ahead and putting your son in appropriate clothing for the day so that he doesnt’ have to change in school. Because someone asking him to change who hasn’t got to know him sufficiently could cause him a big meltdown and cause bigger issues. Have a plan for this or again, a very good trusted member of staff that can help him transition.

This. He needs to be in a school that can meet his needs. For his sake and the teacher and the other children.

What your son really has going for him is you ... you are aware of his needs and are fighting for what he needs. At work, we so often have parents who find it really hard to accept their children need support and this delays the whole process by years. It is such a tricky situation as no teacher / TA goes into the profession wanting to be in the position where they can't meet the needs of their class, but schools are in such a dire state. We have half the number of staff working in our school compared to 10 years ago (due to funding) but the needs of the children have increased massively.

Keep doing what you are doing, speaking up for your son and raising concerns when you have them - your son is lucky to have you fighting his corner.

LAs decline many EHCNA requests regardless of who applies. Any parent receiving a refusal should appeal. The vast majority of appeals are upheld. A parental request and then appealing is still often quicker than schools applying at some point in the future.

I know exactly what the SEN system is like. I have supported thousands of parents to successfully secure EHCPs. It isn’t rare for parents to secure an EHCP themselves, often against obstructive LAs and sometimes schools.

Triggering the timescales is exactly why parental requests are a good idea. Schools often drag their feet and take 1/2/3/4+ terms to make the request themselves.

No you are confused it is a teacher or a TA's job to change incontinent children.

The child has no EHCP - what specialist provision do you suppose takes children without an EHCP?

Without one you have to start in mainstream.

I get why you are angry OP, and it is unacceptable for his nappy not to be changed all day. The jumper thing is tricky, as they may have not wanted to trigger a meltdown, but if you explain in future you'd rather it was removed, hopefully they will help him.

It is really tricky, because he's unlikely to be the only student with SEN in the class- it may be the TA was tied up all day supporting a student who was extremely anxious or who'd had a violent meltdown, or similar, and so couldn't leave to change him- but there should be a plan in place for this scenario. Another poster mentioned the SENCo changing their child- perhaps this could be put in place at set times, or perhaps a TA could pop out of another class at set times?

With communication, and lunchtimes, unfortunately, the thing to bear in mind is maybe 1/3 of the class have some kind of additional need- if the teacher fed back on 10 children weekly, plus monitoring their lunches, then they wouldn't have time to do other aspects of their job. On the other hand, if he had an ECHP, with a specified 1:1, then they would likely be able to do at least some of this.

It's very easy to say, and hard to achieve, but getting an ECHP in place with TA support is likely to be the answer to a lot of these issues. A good SENCo will be able to help with this- hopefully yours is on the ball!

That said, I did see a post on facebook this evening from a primary SENCo saying they've had 5 requests from reception parents to meet them about ECHPs already this term- I do think there is something going on in terms of students coming into reception having more/higher needs than previously, and schools aren't able to cope. The system is unfortunately at breaking point, and there really aren't all these extra special schools around to accommodate students (especially at primary age) either.

Your poor child. Why is he not being looked after in a SEN setting? It sounds like the school have hugely underestimated his needs. It's not fair on anyone but mostly your poor wee boy. Are things so bad in England that this level of need is supposed to be met by mainstream? It's crazy!

There should be a toileting plan in place that details the frequency of nappy checks, who and where the changing is going to happen, what resources parents need to provide- eg nappies, wipes, sacks etc and how the nappies will be disposed of. This plan should be agreed with parents asap. We have several children in nappies in reception. Changing has to happen for those children.

There might not be a law on having 2 people for intimate care (nappy changing) but when you've worked in education for long enough and experienced your fair share of bonkers unfounded accusations from parents and children, I sure as hell would refuse to change a nappy or do any intimate care without another adult present. Only newbies or really naive staff would even consider it.

I feel the problem here is with the school. Many children arrive at school now who are not toilet trained. They do not have EHC plans so somehow the school must use their available resources to make it happen.

Absolutely this level of need is supposed to be met in mainstream. There aren't enough SEN settings and there isn't sufficient funding for mainstream.

You don't need two members of staff to change a nappy, school can't refuse a child in nappies and they cannot ask parents to come in to change nappies but staff cannot be compelled to change nappies. Staff may volunteer to support children with additional health needs, however they cannot be forced to do so and can refuse even if they have an agreement to provide intimate care for other children. My union strongly recommends that staff insist on a chaperone to protect themselves. I have refused to assist specific children with intimate care, one who was prone to making up stories including a history of false allegations and another who would violently resist being changed. My salary equates to roughly £15.5k a year, that's not enough to persuade me to put myself at risk of allegations or at risk of being kicking and punched.

OP, apply for a Needs Assessment and if the LA refuse then appeal to tribunal. The process is relatively straightforward, they make it look more complicated to put people off applying and the majority of parents refused by the LA go on to win at tribunal (over 90%). LAs refuse as a coat saving measure because some parents will just take the refusal and go away so then the LA doesn't have to fund anything, it's a gamble for them but one that often pays off. The squeaky wheel gets the grease so be a squeaky wheel and keep on their backs, your DS is entitled to an education and is entitled to the level of care and support needed in order for him to access it.

I was once told by my head, who generally had little interest in fairness towards staff, that any TA/teacher could refuse to do intimate care. I'm not sure it does actually fall within the duties of a teacher. I'm not saying I agree with this and think the OP's school have been awful, but it could be a tricky issue from the head's perspective (which is why it should have been sorted months ago).

So do I

Hi OP,
Try to register an Appeal now, if it has only been 2 weeks since the deadline I think you stand a good chance of your appeal being registered. Describe the situation and explain how difficult it’s for your child at the school without 1:1. Do it as quick as you can, it sounds like the school and tge LA aren’t on your side.

I am really sorry for your situation. My friend’s son had the same (asd and bowel problems) and would soil himself at school / still wore nappies. She told me the teachers were not obliged to change him - although they kindly agreed to. I think unfortunately you have too high expectations of the teachers. I am not sure where that leaves you though but I think you need to not expect them to do that these things and see what help you can negotiate. In theory your son can delay school until he is 5 so they might ask you to do that if he is not toilet trained and you get upset with them.
I suspect he might have hypermobility which is common with Asd / bowel issues. People think hyper mobility is in the joints but it’s in the muscles supporting the joints and can be in the digestive system too. My daughter soiled herself until she was about 7 - we used Moviefilm to keep her movements more consistent.

This. Impossible situation all round. Your DS deserves and needs 1-1 care, including intimate care.
School has no funding to provide it.
EHCP can't be applied for until the child has been at school for a while and proven to struggle.
Teacher and TA stretched to the limit, probably feeling utterly shit knowing they're not meeting your DS's needs (and quite likely lots of other children)
Legally the school have to provide for him.
Legally staff have the right to refuse to give intimate care unless it's written into their job description.
The advice is to have 2 people present for intimate care so that's going to be very tricky in an understaffed school. When I taught year 1 I didn't even have a TA half the time!
And all of the above (plus many other reasons) are why I've left teaching.

Dolores87

I fully agree that a toileting issue alone should not (and legally cannot) be a reason to prevent a child being in mainstream but the OP suggests that her child also has major sensory needs, speech and language difficulties and major dietary needs. She has not clarified whether he has academic ones) He clearly should be in specialist provision. Unfortunately the fight for inclusion has meant that this specialist provision does not exist.

EHCP can't be applied for until the child has been at school for a while and proven to struggle.

This is incorrect.

Had to join mumsnet as I knew you were going to get so many silly replies to your post! 🤦🏻‍♀️ Firstly, if you have a child without additional needs why not just take one second to think ‘hang on is what I’m saying true or based on no evidence or experience at all?’ Do you really think suggesting a special school is brand new information for the OP? It takes 10 seconds to google SEND reform England. There are simply not enough SEN schools and children being defined the right help at school and-newsflash-they are actually entitled to an actual education too. And she hasn’t got an EHCP and it takes at least twenty weeks or could be a year to appeal so what’s she supposed to do now? I have heard with children with more needs than this being mainstream!

But to the OP I do think there is a lot of things you could do right now which may help. Firstly, you’ve got to fight for this EHCP-they rely on you giving in. We’ve got our mediation in a few weeks and my sons is autistic but needs sound much less severe than yours. Secondly ERIC will guide you through an intimate care plan which you ask for-I think you’ve got to put it in writing tomorrow. I have a friend whose child with no additional needs going through similar to what you describe so it isn’t uncommon but you’ve got to get that spelled out now in writing. There are sometimes local toileting services which children can be referred to , my son is actually trained at home but struggles at school and we’ve already been referred. We chose a very small school that is an 25 min drive away but worth it (know not everyone can). and met with SENCO, head and teacher before starting and really spelled everything out and asked how we could tackle it together. Like someone said you’ve really got to push everything so I think your only unreasonable thing is here is just letting them think it would be fine and not asking for an action plan ahead of time, but you wasn’t to know. I don’t think you need to go in angry tomorrow-you need to ask to speak to senco and ask what you can get down as a plan now (personally if you have to keep him off a few days until you speak to a senco I would!)

The level of ignorance on this thread has honestly blown my mind. I'd be amazed if there's a school in the country, primary or secondary, that doesn't have children who need toileting support during the day. It's not at all unusual and yet a vast number of posters seem completely shocked and/or suggesting SEN settings. How can so many people be so unaware?

In case it provides any reassurance OP, I've had three children go through primary, one SEN, two not, and not one of them have eaten properly at any point. To be honest I found the school dinners easier because I could at least pretend that they'd eaten something. Opening the uneaten packed lunches each day is fairly depressing but honestly it doesn't seem to have impacted them either physically or emotionally in any way...the stress has been all mine... they tend to eat a bit more in the evening but not always. So don't worry too much about that side of things xx

@misskellyb

I've just seen your post about the nursery saying about eye contact. That is BS from people that have a very limited understanding of ASD.

Both of my children make eye contact and played loads of imaginary games during their Early Years and beyond. In fact, my eldest has the most amazing imagination but is still autistic, has an IQ of 125 but attends a specialist setting.

You are being fed a ton of ignorant BS by the nursery, school and the LA I'm afraid.

I would be finding my own evidence. Doctors letters etc. Get your own private Ed Psych in to assess in school if you can when you're at the appeal stage. Book them in now as it can take up to a year to have an appointment.

Also, get every communication in writing with the school. Follow up every in person chat with an email outlining what was said. That is evidence for the EHCP. So, for example, today I would do an email saying something like "I'm think that it would be wise to have a meeting regarding X's toileting situation and put a plan in place going forward. I appreciate that the teachers are very busy but unfortunately X was left in a spiked and wet nappy for most of the day today. Can we work together and form a plan to support X with his toileting going forward?"

Join a few online or in person SEN groups and listen to the advice from parents who have been through this.