Quiet in school SN child - lost as a parent

[BigTipTop]

Hello,

I've posted a few times and really, really appreciate the support on here. I don't know what to do anymore as a parent and I'm feeling lost, confused and heartbroken.

A bit of background: son is 6 end of year 1, has a private dx of dcd and spd and is under the SALT for emotive language delay and speech delay. He has a IEP in school, and school are in the process of referring him to neurodevelopment / applying for a ehcp....but were unsure which route to go down (autism or inattentive adhd?) He is behind in reading and writing (has just started letter formation) but managing maths ok-ish. Passed the NHS occupational therapy tests due to exceptional speed but the OT said he did all of the test "ham fisted" but has learnt to adapt using a strange fist method to pick items up and with this in mind she has managed to refer him for OT sessions. Peads mentioned he makes eye contact and plays imagination games (he does play but if you look closely he reacts his favourite show over and over) the peads doubts he'll pass any of the NHS criteria for a dx of asd.

So....In school son is very, very quiet. Doesn't fuss or cry or lash out, incredibly compliant and I'm told on several occasions he's absolutely fine. Hes currently chewing through one chew bracelet a day...

My son is struggling hugely with school "refusing", he clings to my leg, cries and cries, tantrums in the house (but not at school) today he went into school under a blanket...school said once I left the blanket came off and he was fine. At home we are experiencing long tearful tantrums and anger. Or he'll come home and spin rapidly, hand flapping and repeating the same phrase over and over. He's gone from a bright happy 4 year old to a very unhappy little boy. I don't feel that school is the right environment for him.... where can I go for support? What do I do now?

Unless the school is going to request an EHCNA now, you should make the request now yourself. On their website, IPSEA has a model letter you can use.

Presenting differently at school and at home isn’t uncommon. Appearing to cope at school but not at home signifies unmet needs at school. The school saying DS is absolutely fine shows they aren’t understanding DS’s needs. If school was easier for DS, home life would improve too. What support is the school providing?

Do you think DS is well enough to attend school?

If you can’t have an ASD and ADHD referral at the same time, from what you have written, I wouldn’t choose ASD.

We're in the midst of something really similar, though a year earlier in the process, with our DS. Had our first bout of school refusal preceded by some subtler telltale signs he wasn't coping. Against all my instincts I helped the school force him in yesterday and last night he just broke down crying, but couldn't articulate what was wrong. I feel like everything in me is screaming at me to give him a break, and I'm surrounded by people insisting school is the best place for him.

I'm phoning our local SENDIASS this morning to get some advice on whether I can ask the school for a period of leave for him, and how to do that (I bet @BrumToTheRescue already knows the answer to this!) As Brum says, this situation is not uncommon and I feel like I'm allowing myself down a well worn path that I know is wrong, and it's time to call a time out and give the poor little guy a break and help him recover. His MS school don't understand his needs and don't spot the signs of him not coping so just keep pushing him. But they're at least helping us obtain an EHCP so I'm hoping to somehow protect DS without burning bridges with the school and slowing down our EHCP.

@Scratchybaby be careful with SENDIASS. Some are good but too many repeat the LA’s unlawful policies.

If DS is unable to attend school because of his MH he can be absent from school just like he would be if he was physically unwell.

If he is compulsory school age, as soon as it becomes clear DS will miss 15 days (consecutive or cumulative and the days don’t have to have already been missed) the LA need to ensure alternative provision is received and this should begin by day six.

Thanks @BrumToTheRescue - I've had hit and miss experiences with SENDIASS so far too, and agree it's smart to be wary. The providers are delivering LA-commissioned contracts against KPIs set by the LA, so no matter how independent they might to be, they still have targets. But I'll get the info and compare with other sources. At the moment having this conversation with the school is impossible because they are a solid wall of "no" to everything I suggest and they're just keen to protect their attendance records.

And that's REALLY useful to know about the 15 days and alternative provision - thank you!! What legislation/regulation or other are you referencing in saying that? Just so I can dig it up and refer to it in future conversations if I need to? I'm not sure what key words to start googling on this issue and haven't found the right documents yet!

I've seen your advice and others' on the dangers of de-registering him and the SENDCO at least has been really supportive in helping us try to get an EHCP (against a really aggressive LA) so am hanging on to school for now. I don't want to jeopardise the EHCP, but I also don't want for it to be that the only way we can get it is by putting DS through distress every single day to keep the process going and play the game. I'd rather get alternative provision asap as we've done this a bit with a private tutor already and he LOVES it. I'm not sure if it's worth hanging on and seeing if we can get the LA to pay for any of it, or if by their very nature they will only provide sub-par provision months or years after we ask for it (which has been the case with our SSPP funding). In which case I'd rather just bite the bullet, take the financial hit and start improving everyone's mental health and wellbeing NOW and get him out of school and start living life again. DS starting school has been like a bomb going off in our household - everything has just fallen apart accommodating them.

Getting as much info as I can now to make an informed decision that's not too shortsighted...

"DS starting school has been like a bomb going off in our household - everything has just fallen apart accommodating them."

This in spades.

I'm sorry you're having a tough time too - I have not much advice as I feel like we're drowning at the moment. Is there any support groups or charities locally that may be able to advise?

I've got a pre assessment appointment booked with a asd private assessment for next week ...I'm just exhausted fighting and fighting both the school and hcps.

Aw thank you @BigTipTop you too. And sorry for hijacking your thread. Absolutely recognise what you're going through and couldn't resist having a rant.

Ironically the job I've had to leave to accommodate school was at a charity that provided advice to people dealing with the fallout of situations like this! We're very lucky though in that this hasn't made us destitute, and this is early enough in DS's education/life that it hasn't created deep seated mental health problems that are going to take a long time to deal with. So we can still turn this around.

What I'd really like is to be able to get back into some degree of control of the situation, in the way we had when DS was at nursery where I was able to work and pay for private support that made a real difference. Whether that's homeschooling with tutors or whatever. It was expensive, but he was happy and thriving and I was still in a job that I genuinely loved, even if a good chunk of the salary was going to private support. Now we've got neither of those things and the school don't seem to really want to work with me in any meaningful way. I've got fantasies about taking him out of school altogether, hitting the road and homeschooling him from a camper van near a beach 😅

I don't have any great advice for the school situation either but hang in there. I suspect protecting DCs mental health and wellbeing is going to be a lot more important than academic learning at this age, and if we can manage that the rest will fall into place later (we hope).

@Scratchybaby don’t deregister. Parents find it easier, although not easy, to get support when their DC remains in the system. Crudely, you are someone’s ‘problem’. If you deregister and EHE, it is easier for others to sweep DS’s needs under the carpet. However, that doesn’t mean you have to force DS to attend if he can’t. If he can’t attend, his absence should be authorised and recorded as code I just like for physical illness.

Section 19 of the Education Act 1996 covers the LA’s duty to ensure DC unable to attend school still receive a suitable full-time education. The statutory government guidance covering it is “Arranging education for children who cannot attend school because of health needs”. A previous version was called “Ensuring a good education for children who cannot attend school because of health needs” LA’s you may still see it referred to as that. On their website, IPSEA has a model letter you can use. The LA may try to tell you it is the school’s responsibility, but, ultimately, the duty lies with the LA. They may also try to tell you it only applies to physical illness, but that is not true. If you deregister to EHE, the LA will say you are making suitable alternative arrangements, thereby relieving them of this duty.

Personally, I wouldn’t EHE. You may have to appeal to get a comprehensive EHCP and then enforce the provision, but a good EHCP can fund far more support than the vast majority of parents can afford to fund themselves. Having said that, if you do decide to deregister, the EHCNA will still continue.

Thanks @BrumToTheRescue I understand what you're saying. And thank you for the advice on absences during the interim. We had another awful drop off this morning and I'm really thinking I need to ask for a period of absence for him to recover before trying to send him back. I can't keep doing this to him. There's a really well documented path ahead of us of deteriorating mental health if we keep forcing him. I am fuming this morning - at the school and at myself for going against every instinct in me to just let him stay at home.

You're advice has been really useful and I'll be referring back to it to try to get accurate information out of the people I speak to next. Thanks.

@Scratchybaby don’t ask for a period of absence. Tell the school DS is unable to attend (then check it is being recorded correctly). You wouldn’t contemplate asking for a period of absence if DS was unable to attend because of a physical illness. You would tell them he wasn’t attending.

ah, I see what you're saying. good point!

Everything Brum has said. It was dd's school avoidance that finally got them to understand that, despite appearances, she was not fine in school. I stopped having the daily battles with her, which were absolutely soul destroying for us both, and simply said she was unable to attend due to poor mental health. I forced the issue by applying for an EHCPNA, which was tricky without the school's senco on board, but we got there in the end. I did have to take time off work and pay for private support to help her with her anxiety, emotional dysregulation and sensory overload in the meantime though.

After a fairly long battle (dd was not/ is not yet diagnosed) we finally got an EHCPNA, which provided the Ed Psych's report which confirmed our suspicions that dd was not fine in school. This led to us getting the EHCP in place, despite no diagnosis (it was a battle though).

Fast forward a year, she's finally thriving and manages school very well, with the occasional blip. Our lives have been transformed, she's a much happier, well regulated child again at home. Hang in there.