To think that if "school is not childcare" then HMRC and the DWP have missed the memory?

[CatONineTails]

I'm a lone parent with a 7yo who has as yet undiagnosed SN (presumed ASD and possible ADHD). I have worked since he was small, running my own business as a sole trader which is pretty successful and earns me a modest living which is topped up by WTC and Housing Benefit.

DS has always struggled at school but since moving up to the junior school this year things have got worse and worse. We reached a point recently where he was having daily meltdowns, often with accompanying aggressive or violent lashing out at staff and other children, and he has now been put on a pastoral support plan with a 50% reduced timetable until the school can get full EHCP in place with funding for a 1-1 etc.

So my earnings have plummeted because I'm now only able to work 2.5 hours a day (that's on a good day - at least once a week there's a meeting I need to attend about DS that takes up most of the time he's in school). DS can't go to any sort of childcare, there is none that meets his needs locally. I have no family support local enough to help. No friends that feel able to look after him. School breakfast club won't take him so I can't even start work early.

So off I trot to the local one stop shop where they do benefits advice etc. But I'm not entitled to fuck all extra, and in fact if I don't carry on working 16 hours a week I may lose my WTC. I've applied for DLA and carers allowance but with no diagnosis it's not a given that I'll get it and so far have heard nothing back. I usually work extra hours in the run up to the summer holidays so I can reduce my hours while DS is off school but that's not going to happen this year. I honestly don't know how we will manage.

I wept in the SENCOs office today at a meeting and explained the financial pressure that I'm now under, only to be told by someone from the local authority that "school isn't childcare" and that DS needs must come first. Well as it happens DS needs a fucking roof over his head which means I have to work to pay for it! Of course in an ideal world I'd be at home ready and able to drop everything to meet his every need but I'm not, I can't be, there's only one of me and Im really struggling with getting so little break from DS plus trying to work the necessary hours so I don't lose all my clients and my tax credits to boot.

Some one really should tell HMRC and the rest that "school isn't childcare" so they stop insisting that all parents with a school aged child are free to work within school hours If the DLA application is turned down then I will be expected to work and earn as though there is no difference in my circumstances despite the fact that it is literally not possible for me anymore. I know IAprobablyBU but the utter inflexibility is so frustrating.

You do realise that a disability can only be diagnosed if it exists don't you?

And said disability will exist regardless of diagnosis.

And said disability will cause a child to have exactly the same issues regardless of diagnosis.

Diagnosis can take YEARS.

I'm looking at another 16 months wait for an initial appointment. By the time it comes through we will have been on the waiting list for nearly 2 years.

It would be criminally negligent and cruel to insist that without a diagnosis my DS (or any other disabled child) has no issues at all and should be expected to behave as though their disability didn't exist.

@Eurovision thank you, I will do so later if that's ok. There are details That I haven't posted as they are too identifying but that are relevant to EHCP application.

SweetCheeks1980 if agencies involved have acknowledged the possibility of sen, the sen code of practice applies. No diagnosis necessary.

Sweetcheeks Christ alive you see some arseholes on here but your ignorance, lack of empathy and lack of understanding have left me open mouthed. I thank the staff, who give my son so much attention, every single day. They are a huge part of his support network. You should thank your lucky stars that you are not dealing with a child with SN. Do you really think that symptoms/behaviour should not be dealt with until formal diagnosis? A child that, in your words, "won't follow rules". Go educate yourself. Dear God.

SweetCheeks1980

You've clearly never had to deal with a child or relative with SN or complex health needs - which makes you a very lucky person. But it doesn't excuses your ignorance.

Before posting why don't you educate yourself. There are thousands of children with disabilities both physical and behavioral that have no diagnosis some are just classed as 'unknown genetic conditions'. Should they be treated as able bodied/nurotypical until medical science finds an answer. Children who can't walk or talk? Medical science is limited we can't diagnose everything. That's why the disability act covers the symptoms not the diagnosis.

OP's child clearly has a behavioural problem they need help and support so they can be educated and reach their full potential just like any child. If the other children are being disturbed it's because the school haven't put the right provisions in place. It is not OP's fault or her child's.

I understand some of what you 're going through. My ds refused to have his nappy changed at school and staff were just going to leave him in a wet nappy for 3 hours! So I took him into the school toilet myself, took photos of everything in the room and encouraged him to play with the taps etc, no pressure at all. Later we looked at the photos together. It took a while but he was fine in the end. I find my ds gets upset when he is being hurried, he has learning difficulties but not autism. My older ds has autism and I find with him if I can work out what is upsetting him it's a lot easier to fix although that's easier said than done as I'm sure you know

Cross posted with sweetcheeks, some people's ignorance is truly shocking.

We're in a similar boat. Ds7 has very similar difficulties and after multiple fixed term exclusions due to fight or flight anxiety causing challenging behaviour, he's been on a part time timetable of 1-2hrs a day with a great 1-1 for 3 months. There's no sign of it ending as we are still a month off a draft EHCP being done (it is all in the pipeline - just hoping it gets issued).

Technically, we have agreed to it and signed the forms so the LEA and school are happy and it's above board. But....it's on,y because we have no alternative. The other option is send him to school full time, he gets a a bit of support but not enough and he'll get permanently excluded. This school CAN cope with his needs if they have the correct resources but they can't provide enough support without an EHCP as they are financially crumbling.

It's a totally shit system. That said, ds is so much better now. His anxiety is much better and when he is at school, he's doing much better so I hope in the long run we will get there.

I'm fortunate to be married and have another person to lean on. But he's given his job up to look after ds through this as there is no end in sight which means we are financially screwed. Our mortgage was not taken out with a view to be a 1 income family!

@springmadness10 have you applied for DLA, then your DH could apply for carers. He can also transfer a bit of his tax allowance over to you. Tax credits may also kick in, even if you've previously not qualified if you get awarded DLA.

I had to give up work too when school couldn't cope. It's not the way life was ment to be, but it is now much easier a few years on.

@SpringMadness10 it is so difficult isn't it! Because obviously the shorter days reduce the incidents by 50% but the cost to me and my family (I also have an older child) is immense.

Hi OP - if you ask MN (report your own post) they can move this into SN chat, although I can see you’ve had lots of good advice already.

Thank you so much to all who have posted I didn't expect so much good practical advice and kind words, I was just venting. But I'm gearing up for a fight now, I can see I'm being fobbed off and left to pick up the pieces! Not good enough. Somehow I will find the time and energy to fight this battle as well. Thank you again.

Just returning to this to say thank you for all the advice. DS was awarded DLA (low rate mobility and middle rate care) but only til his 9th birthday which is in 12 months time. So I'm not applying for Carers Allowance as it would mean a transfer to Universal Credit and if the DLA renewal is turned down next year that will be a nightmare with my self employment and I won't have any transitional income protection. Better to hang in there and try to keep working so I don't lose my WTC until I'm moved onto UC on their timescale so I get the transitional protection (it just means that if UC leaves you worse off than tax credits then you get an additional amount to top it up to what you got under tax credit rules).