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.

Your son sounds exactly the same as mine! I had a meeting with the senco and agreed an intimate care plan, and his nappy was changed by the senco with no issues. You need to push the school to apply for an EHCP. My ds's was refused the first time but agreed to after the school appealed. He eventually got a 1 to 1 who was amazing! Although it was still the Senco that dealt with toileting issues. Do not remove him from school!! Pm if you like as your ds does sound like the double of mine! My ds is 8.

I was addressing the multiple ignorant and ableist posts from the posters who seem to think that a child who needs support with toileting should not be in a mainstream school at all.

Agreed @OvertakenByLego From a parental perspective, I have found SENDIASS to be useless.

Also, I'm sure the school nursing service has its place but if this child is already under a specialist continence team, the school nursing service will be nowhere near as much help as the specialist service.

I'm sure this head means well but it's just a mainstream box ticking exercise while the longer the child is in mainstream, the more trauma they'll be put through by the sounds of their needs.

And yes, parental applications for EHCPs do work with the right advice. Almost all the SEND parents I know (at least 20 families) have successfully been awarded an EHCP for their child by doing a parental application.

Also to the other poster... suggesting a specialist isn't ableist. Some children with additional needs do cope well in mainstream but many don't. This child has multiple needs. My own children are highly academically able but were traumatised by mainstream education and still needed a specialist setting.

When my ASD son started school 8 had to go every lunchtime to change his nappy, luckily I was only working part time.

With an EHCP a 121 should be employed

not necessarily. Not all children with an ehcp need 1-1. Even more often EHCPs are written so badly they don’t come with any guarantee even if the child does need it.

i had to fight to get the wording in DS plan précise enough to guarantee that he has 25 hours a week 1-1 during lessons. Too often EHCPs aren’t worth the paper they are written on.

you need to get him an EHCP and extra funding, OP. Don’t let them fob you off to save money. Get an advocate to help you. Have you been in touch with IPSEA yet?
your poor ds

My son was on a 4-8 sachets a day of movicol for 4 years. Then slowly down to 2 sachets for another 4 and then slowly weaned off.

He had to have picosulphate on top of this to actually clear him out as the movicol alone wouldn't do it which also caused him to have stomach pain in which case he would be too poorly and we'd keep him home, if he couldn't hold it at all we would keep him off once he was out of nappies due to not wanting to embarrass him and for his dignity, but for those years we had to keep his poo runny to heal the damaged caused by extreme impactaction, (medical misdiagnosis led to that), basically if his poo wasn't runny he was constipated and further stretching his bowel which they said was very over stretched. So he had to start school soiling which he managed to get some control over by year one and then until about year 3 he had to frequently go to the toilet through out the day and I'd send him with spare trousers and pants just in case. This was obviously done under the guidance and advice of a specialist and with support from school. If he had to have stayed home due to the initial soiling and then the frequency of needing to go and the risk of accidents he would have gone to school very little until about the end of year 3 unfortunately.

The problem is there aren’t enough specialist school places available, and certainly most people don’t live near one, which causes logistical problems.

The government decided to close most of them and integrate SEN children into mainstream schools so everyone could learn to be more inclusive and the children could attend their local school.

However they provided no additional funding or training to mainstream schools to support those children. Getting any support is a huge battle, EHCPs are incredibly difficult to get, often those that are successful have the resources to pay for private assessments (SALT, EP, OT) themselves.

OP met with the school, explained her sons needs and they told her they could manage. This is also very common, schools overstating their competence in supporting SEN chidlren then completely letting them down.

I’m really sorry OP, I know how stressful it all is but you will find a way. In the meantime if it is possible to keep him at home until they can put the right support in place for him then I would do that. They are rushing his health (urinary infections, dehydration, emotional distress etc). Absence would trigger EWO and LA involvement which should move things along in applying for an EHCP.

How she going to get the EHCP if he's not in school as there's no evidence he needs support?

I have heard of this being accommodated in mainstream education. It is probably more common than you realise

@squeakyclean13
Having read through all the replies now, I think you are correct - I wasn't aware.

Also I'm in Ireland. The situation is different from what I see described here (so I really shouldn't have posted at all, sorry about that.)

I really hope you can get the help you & DS need OP

I’m not going to get into a to and fro over how good SENDIAS are, whether or not XYZ will be any good and the battle over parental EHCPNAs.
I’m also, gracefully, not going to get upset over anyone thinking I’m just here to spout a
mainstream, boxticking, LA agreed approach. I’ve been in primary education for over 20 years and worked for many years in SEND. At the moment, the system is at breaking point and I’ve never seen such a lack of places, finding and lack of recruitment.
In the OPs post, a parental EHCPNA failed. If the SENCO is any good, get the professionals to help. If they need funding, you have to do a costed provision map and only the school can effectively do that.

I was only trying to help.

You say he refuses to change at home sometimes, and is therefore wearing pyjamas all day?

If you can't persuade your child to change, how do you expect school staff with very little time to do so??

The OP's son has the right to an education and if this means he needs personal care then it is the school's duty to arrange that and to fund it. They can apply for an EHCP if they need help with funding but they do not get to offer substandard care til then.

30 4/5 year olds sitting quietly on their 2nd day of school while the teacher observes both is freaking hilarious 😂. Tell me you don't work with children without telling me you don't work with children.

OP, YANBU - schools have a duty and an intimate care plan should have been in place and gone through with you before your DS even started. Im getting the impression that the school do not really want to so you may want to consider a more welcoming mainstream - maybe a 2 or 3 form entry as there will be more staff in the building.

I'm sorry you're going though this OP, it's so hard.

My experience probably isn't helpful - my DS7 is still awaiting assessment/diagnosis (we're in the South West) but ASD suspected since nursery. No EHCP, told needs not high enough. He has issues with toileting, withholding etc that sounds similar, and extremely restrictive diet.

Toileting - the continence nurses have been amazing, he is now able to use the toilet though he needs prompting and support, it's been a long road getting here. School were not able to do much as staffing didn't allow it - teacher couldn't leave classroom and limited TA support. In the end, we had to go in before and after school and lunchtime for toileting. I work part-time. DHhasbeen able to work from home the days I work and go upon his lunch hour. The days i am home i had to go up daily with my two younger children. He still cannot access after school provision due to toileting issues so my hours I can work are v restricted. We are trialling not going in and relying on teacher prompting - today this didn't happen so he hadn't been all day when I arrived.

Food - he will only eat a few different t foods, no school lunches. I pack what he will eat but he often doesn't eat. Apparently nothing they can do apart from reminding him to eat.

In my experience schools are so stretched they can't do much, I hope it's better for you.

Yes, I'm well aware of the situation, having been a teacher myself.

I home educate my autistic daughter as I believe the education system in England to be utterly broken both for SEN and non-SEN children.

I think even for neurotypical children there is a massive adjustment in moving from nursery to reception and the change in the level of care and communication. I don’t think they were honest when they said they could manage his needs as they do sound like they need an additional TA. It will also be like herding cats for a few weeks. At the end of the day though, you have a little boy who has been left in a full nappy and likely at risk of overheating. I wouldn’t go all guns blazing but calmly say his needs weren’t met yesterday and what will the school do to ensure he is cared for appropriately.

It makes me so angry that parents have to fight so hard for funding to enable their children to access education. It isn’t fair for the individual child or the rest of the class when their needs aren’t being met. My daughter has now reached y3 and in her class there are 2 children with autism and 1 with adhd. It has taken 3 years to get an additional teaching assistant (not sure which child managed to secure the funding) and there have been so many challenges for all. On the more positive side children with physical disabilities in the school have had funding in place and an additional TA from reception so the LA will obviously pull their finger out sometimes.

There does not need to be 2 adults present to change a nappy, that's a myth.

A member of staff!!

Many parents receive a refusal to assess or refusal to issue. That applies whether it is a parental request, a request from the school, or from another professional. A costed provision map is not essential for requesting an EHCNA and schools can still provide one even with a parental request.

You have been let down by everyone as he clearly needs additional support.

You need to understand what is preventing the nappy changes and how lunch is being supervised. It doesn’t matter if they don’t have the staff - they can either manage his needs or they can’t, and if they can’t then they need to tell you and the LA and you can start working towards a more suitable placement for him.

My sons’ school are far from perfect but they supported the EHCP process from day 1 as they could see the additional funding was necessary and his needs are less complex than your sons.

Even when my son was in mainstream nursery (attached to the school) they fed back every day at pickup - a TA had a notebook she carried around to note anything important or new words he said, they had an app to communicate with us.

You have been clear with them and they know what he needs. They can meet his needs or they can’t and you need to push them on it.

Our LA started declining the vast majority of parental EHCP requests in 2021. I know because I used to work for them and there’s a reason why I now don’t… I only know one parent who managed to get one and only because she made a lot of noise. That child only got his specialist school place in June and until then they had no idea if he’d be starting school this year or not.

The posters on here who suggest just taking him out and popping him into a specialist school have absolutely no idea about what a shit show the education system has become in the last few years, and it was bad enough before then.

I taught Reception for 15 years. 😂 "Sitting quietly" was a figure of speech! Sounds absolutely ridiculous now I've read it back and you've pointed it out. 🙈

What I meant was teacher can have one foot in the classroom and one foot in the toilet - in extreme circumstances! And also, should the layout allow. My last school was a new build so toilets in every EY classroom. Am aware this is often not the case!

Evidence gathered at nursery, Ed psych review, ot review , paeditiriton report.

we applied at nursery which meant she started main stream with a 1 to 1 did three great years and then even the gap got to big between her peers moved to special school.

there is a Facebook group called Sen action - forum for special education needs. There are numerous cases there that align to this situation.