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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To want my child to be able to go to school all day every day and to be in bits because it's probably never going to happen and I'm utterly beyond exhausted and fed up with it all?

103 replies

HerstoryRepeatsItself · 26/02/2020 12:57

DS is 9 and autistic. He's been at two mainstream schools both of which failed him terribly and has now started at a small specialist school. He's only doing 3 afternoons (1.30-3.30pm) a week and there is no indication that this will change any time soon. This school is literally the only school within 50 miles and 3 local authority areas that was a) suitable for an extremely bright and academically able child but who has violent and challenging behaviour and who can't cope in a mainstream school and b) actually had a place for him.

It's been 2 years since he was at school full time and I'm just at fucking breaking point. He's lovely and very chatty and bright but I just need a break. I work from home, which I don't want to give up, so on the 2 days he is home all day I have to work while he plays and watched TV on his own etc. The 3 days he is at school, we try and do stuff in the mornings and then it's a 30 minute drive so I just have to sit and wait in the car while he's there as there's no point coming home again. Sometimes I whizz to Tesco to get shopping in etc but he is not there long enough for me to get to a decent sized town and back so mostly I just sit and dick around on MN while I wait for him.

We live somewhere rural and poor, so there just aren't lots of things to do. The library is hardly open, there isn't a museum for 25 miles, local home ed groups are mostly for younger children and full of mums who are somewhat sniffy about the fact I would rather DS was in school! And lots of their meets are in the afternoons anyway, when I'm ferrying DS to his 2 hours of education.

His world is so small and boring and I'm devastated for him. His dad isn't around (long story) so I'm all he has, my family are useless and I'm low contact with them. He's so so so clever and desperate to learn and make friends and there is just nothing for him. I'd move to somewhere with more options, but I have 2 older DC in crucial years of secondary education so that's not realistic for another 3 years or so.

I feel terrible even saying this but I'm so fed up of him being at home so much. I adore him but I am worn out, I have no patience for yet another fucking role play board game, I just want the mental break that dropping him at school at 9am and knowing that was me free until 3pm would give me.

There is literally no service to help me btw so whilst I'm open to suggestions, I don't think there is anything to be done. He sleeps at night so I don't get respite or a disability social worker etc! As apparently that's all the break I need. It just makes me so fucking angry that DS isn't getting what he is legally entitled to and that basically, nobody gives a shit Sad

OP posts:
Bobbybobbins · 26/02/2020 16:04

Sorry things are so tough OP. I have two DS who are both autistic and we are hanging on by the skin of our teeth.

The poster above is right about transport - if they give you petrol they legally need to provide transport. We get petrol money for our eldest but will need to convert to taxi next year when the younger one goes to (a different) special school.

SinkGirl · 26/02/2020 16:09

I agree on the personal budget - have you had a social care assessment as part of the EHCP process? You can request one if not.

Eurovision · 26/02/2020 16:31

Have supported parents with similar issues. I told school student would be attending full time . They weren't happy but we stood firm. They threatened to exclude but didn't as would have been an interesting appeal.

HerstoryRepeatsItself · 26/02/2020 16:51

I was told no social care assessment as DS sleeps at night and gets DLA so they don't consider that we need respite or social care help. Apparently when he sleeps that gives me a break, and the DLA should pay for extra help if I need it.

I'm going to go back to them about transport. It's the only thing that even might make a difference.

OP posts:
HerstoryRepeatsItself · 26/02/2020 16:59

Oh and I cannot move, unfortunately. I have 2 older DC who are very settled in the local secondary school and moving them would be hard at this stage of their education. Their father also lives nearby and they see a lot of him too (different dad to DS). Plus, their lives have already been so impacted (let's be honest, limited ) by DS that I don't want to add a hugely disruptive house move away from their schools/friends/dad etc.

OP posts:
JudyCoolibar · 26/02/2020 17:32

Been told we can't get a taxi until he is doing normal school hours? Something about the contracts they have with the taxi firm. So they're paying my mileage to take him ATM.

They're lying. They have a statutory duty to provide transport, and there is absolutely nothing in the statute (Education Act 1996) that says they are exempt because they choose to negotiate a different type of contract with the taxi firm. Write to them to tell them you are no longer prepared to be the driver, refer them to s508 Education Act 1996 and their duty to ensure the attends education and receives the SEN support set out in his EHC Plan, and ask them to confirm that as from next week they will provide a taxi. Tell them if they don't you will have to consider judicial review. If that doesn't work, contact SENTAS or SOS SEN.

JudyCoolibar · 26/02/2020 17:39

His EHCP is still not finalised after the last review. It is weak and open to creative interpretation but I've got to wait for the final to be issued to formally appeal it. Should be any day now. But where do I get the time and headspace for a tribunal case? I'm already on my arse!

That means that the original EHCP is still in force and the LA has a duty to secure the SEN provision that is in section F. I assume it will be out of date and fairly useless, but what is in your favour is that it is highly likely that they can't supply that if he's only in school two hours a day.

How long ago did they issue the draft? If it was more than 8 weeks ago, point out that they are breaking the law again, and require them to produce a finalised EHCP by a specified date failing which you will take steps to enforce your son's rights by applying for judicial review. Again, if that doesn't work contact SOS SEN to get a formal pre-action letter sent. If you had to take action (which is unlikely - the LA won't want to risk it because they would inevitably lose) you could get legal aid in your son's name.

For the tribunal itself, you might find SOS SEN's workshops and/or appeal booklet helpful - www.sossen.org/shop/product_info.php?products_id=32

JudyCoolibar · 26/02/2020 17:44

As PP have said, your child is entitled to full time education. If the school claims to be able to meet your son's needs, then they should be able to cope fine full time. However, if they genuinely can't, then the LA should be providing something extra by way of home tuition to fill in the gaps - probably at least an hour a day. There is guidance that says full time education need to be school hours if a child is getting tuition because it is so much more intensive than classroom teaching.

I'd suggest you refer the school and the LA to this case which confirms the duty and ask them for their immediate proposals for full time education.

Aveisenim · 26/02/2020 18:45

These groups may be useful if you're not already a member? They're great for advice and a supporting ear :)

www.facebook.com/groups/NFISFamilySupport/

www.facebook.com/groups/700723193272158/

LettertoHermoine · 26/02/2020 18:56

That is so dreadfully hard OP, YANBU in the least. I really hope something changes for you and your son soon.

GreenTulips · 26/02/2020 19:02

Are there any local charities to fight your case?

DefConOne · 26/02/2020 19:22

I feel for you OP. My bright, demand avoidant aspie girl was permanently excluded from her second primary school at 10 due to violent behaviour. After a year in special school she is now in mainstream with school transport. It’s been a bloody battle every step of the way. I have made myself a pain in everyone’s backside to achieve this. The answer to EVERYTHING is always no unless you keep at it. I’m juggling work, another DC, two bereavements as well. I’m naturally anxious and hate drawing attention to myself but I had to for DD. It had been worth it but I am broken.

Good luck OP. Keep pushing for what your son needs x

ZagZig · 26/02/2020 20:04

I've no doubt you're doing as much as you can.
There's not enough recourse for the system when it's acting unlawfully. By time theyre held to account it's the families who are on their knees.
Keep going OP x

Grasspigeons · 26/02/2020 20:09

I thought i had started a thread in my skeep reading this - but my DS is only doing bits of mornings, not afternoons. I call it micro-schooling.
Cant offer any advice but send good wishes and solidarity.

Smurf123 · 26/02/2020 20:21

What would happen if you dropped him off at school first thing and told them he had to do all day?
I am a sen teacher in an early years setting. Majority of my kids came from mainstream nursery where they were only doing an hour or two sometimes also with their parents present. But when they start with us they all do the whole day - 855-1400 from day 1 we don't have phased entry.
I would definitely fight for the transport but I would also try and argue that as a child with autism your son would strongly benefit from the firm routines and structure involved in school and that it is in his best interests to learn from that start that school happens Monday to Friday and that he is in school from 9am - 3pm every day. The first few weeks are likely to be hard for him and yes he will be tired but he's also been excluded from 2 previous schools and school need to be firm that regardless of his outbursts etc he is there to stay and that they are clear, firm and fair regarding the structure, rules, expected behaviours and consequences.

Smurf123 · 26/02/2020 20:22

I hope you get sorted for both you and your son Thanks

SENcrisis · 26/02/2020 22:03

Testing name change.

boopboo · 26/02/2020 22:11

Absolutely feel for you. Have you looked at residential schools? Would that be an option if you could find one that would take him? I’m going to google search to see if anything like that exists. Are you absolutely sure your older kids wouldn’t mind moving? Have you spoken to them about it? If you could find a brilliant school for them? It might all work out better. Surely being stuck somewhere rural and poor must be shit for them. Move somewhere with loads going on for them to do.

SENcrisis · 26/02/2020 22:47

I second the suggestion that you simply take him in at 9 am and leave him till pickup. Email the SEN caseworker, pointing out that the staged start is now over and he is entitled to a full time placement.

I would also point out that if a part time placement continues past the staged start, then that means that a day setting is insufficient, and that he is therefore now in need of a highly specialist residential placement somewhere such as Breckenbrough. Because he is entitled to a full time education, and if they can't give him one at this school, why, they may need to reflect upon what that means.

They want you to home ed, yes. But they can't make you home ed, and right now they're just not bothering to address this because it's a problem for you, not them. So I'd highlight that there's potential for it to explode into a huge problem for them, financially, if they provide you with a stack of evidence that needs cannot be met at all, locally. Give them an incentive to make this work.

I also suspect that they want it part time as long as possible because that way, they save the school transport costs. The school and the LA both gain from this arrangement. But if this placement fails, residential is the next step, and that will hugely increase their costs. Create a paper trail making that case. Get the SEN caseworker to stop ignoring this as someone else's problem, because if this goes to Tribunal and there is no full time ed on offer they can't defend a residential, and they know it.

SOSSEN are brilliant. I'm a bit biased as I know one of the staffers and she is a rock star.

My own LA tried to argue that my child, who is academically extremely able, should go to a purely vocational school. No prospect of GCSEs, not ever. Functional Skills in maths and English, and that would be it. Otherwise he'd learn bricklaying and carpentry. He was 9 years old at the time. So a clever child would lose any chance at all of anything but manual labour, before he was even in double figures. Wasn't specialist to his disability in any way, in fact they mainly cater to kids who've been excluded. Mostly teenagers. No therapies for his physical challenges at all. Those physical challenges also meant that he couldn't engage with the vocational curriculum, anyway. We assumed they did that to try to scare us into keeping him in mainstream, where he wasn't coping. Just to save cash. So we borrowed a huge chunk of money, and spent it getting him a place in a school where he could access an education. Which he is entitled to have.

We were lucky enough to able to borrow - BORROW - twenty thousand pounds, just to piss up the wall forcing the LA to do what the law said they should have from the start. To anyone unfamiliar with SEN in this country by now, I'm not even joking. That does count as lucky. I know someone whose breast cancer meant the GP got referrals for her kid, and that's the only reason she got an EHCP, because school were dismissive of problems but each new medical report was more serious than the last. She's chuffed she got cancer because it means her kid got what she needed. How many levels of fucked up is that?

It's a hidden world, SEN provision, isn't it. One where 95% of parents win their Tribunal cases, but most can't afford to get to Tribunal at all. So all too often, their kids are failed. We all know EHCPs are deliberately being written so they can't be enforced, and lots of parents don't know that because they don't know how they are meant to be designed. Lots of weaselly descriptions of provision without saying who gives it, how often, or for how long, so ten minutes a month could be all they get when they need two hours a week. A dozen hours with a TA, but that TA can be the normal one in with the class, not 1:1 at all, and the child gets no more time with them than anyone else without an EHCP would, and the parents only find that out when they ask WTF. The whole thing is some horrible game. It's beyond shit, and I know how you feel. I send so much solidarity and sympathy and support.

Try SOSSEN. Honestly, do. They do answer their phones and they can be such a comfort.

The system is so much more broken than most people could begin to imagine. It all happens in the shadows, and most people never engage with it, so there's little incentive to fund properly or get things right. And when you look at the mess the NHS and mainstream education are in, it give you some idea of how dire a hidden system, used by children whose parents are mostly too drained to do more than fight for their own child, has become.

It's fucking awful. I send love, solidarity, and virtual gin.

If you'd like a vent, PM me. I'm using a different user as I don't want our LA to link to my usual one (people will think that's paranoid. Bless their hearts, and try googling Connor Sparrowhawk, aka Laughing Boy) and I would absolutely be happy to chat. Keep on keeping on. Your son is enormously lucky to have you as his advocate. If only all kids were so blessed.

SinkGirl · 26/02/2020 22:54

You’re absolutely right SEN - people who haven’t been through it wouldn’t believe it. I’m still in complete shock about how bad it is.

OP - when you say there are no suitable schools is that independents as well? I guess you’ve already looked into that, but definitely do if not. I know it’s fucking exhausting to keep fighting and so hard, but keep going. You know the law, you know they’re in the wrong. You can do it.

FraglesRock · 26/02/2020 22:57

What would happen if you turned up every morning with him? It's his school and he has a right to an education, you have phased him in, they can't take forever.

SENcrisis · 26/02/2020 22:57

Oh, and if you haven't already, have you considered a visit to your MP? They can chase things up, and that can sometimes make things move a bit more. Depends on the MP, but I know people where it's made a serious difference, if only in timescales and accountability.

JudyCoolibar · 26/02/2020 23:49

I also suspect that they want it part time as long as possible because that way, they save the school transport costs

Only by acting unlawfully.

SENcrisis · 27/02/2020 01:28

LAs make up law as they go. It's appalling, because the ubiquity of that across all LAs means it has to be intentional. Our own LA says the same as the OP's own, and I'd bet we aren't in the same county and that it isn't the lone one trying this one. Not lawful, no, but honestly who has the fucking energy to argue? The battle just to secure the provision is so great.

It's grim. They know most of us can't face more wrangling. Some can't face any. And the children and parents get shafted accordingly.

Quite honestly I wouldn't even know where to start, enforcing it. The unlawfulness just comes at you from every possible direction. Feels like whack-a-mole sometimes. And you only have so much bandwidth available. It's all a mess.

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