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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask Tory voters what I do now.

434 replies

GailCindy · 13/12/2019 11:21

I have a son who has SEND issues. I am trained as a senior nursery practitioner and have done a lot of courses to back up my college NVQs so I can look after children with quite severe disabilities in a range of settings but I like nurseries. On paper I could get a job for about 25k quite easily.

My son is 14 and has SEND issues. I worked full time until he was 12 and half way in year 7 when it became impossible to work and be a mother to him. Over the past 3-4 years, his support in school has dwindled so he now gets 10% of what is on his EHCP and none of it is 1v1. It is all in small groups which is better than nothing but not if it is only for 2 of 25+ periods he has in a week. My son is not violent or disruptive in the usual way. He will become very anxious and have panic attacks if he feels overwhelmed in any way by his surroundings or work. This sometimes mean he will cry or become very withdrawn and unable to sit in lessons. Rarely he will explode but he wont hit other people. It will be closer to self harming. Also, for reasons related to his ASD, my son goes through uniform/clothes/shoes much faster than other kids his age. Quite a bit of his DLA goes on uniform where I buy at least one item a month. Often 2 items. Plus other clothes.

They wont let him take his phone to school. I was part of several parents across the country who tried to protest these rules locally and nationally but the education minister backed the schools with these rules. My son has to travel alone to and from school because I work* for a few hours per day. He can become overwhelmed by something unpredictable happening so not having any contact (not even by phone box as he cannot carry money) on his way to and from school is terrifying. Plus they issue same day detentions for up to an hour so I never know when he is leaving school. Same for a club or event. The Xmas auditions ran 1hour past time until 630pm and they did not tell parents so we were all wondering where our kids were. Nobody answering school phones and of course we cannot call the kids.

These two things with school always ringing me and him needing to be able to contact me means I cannot do my job. We are not allowed phones in the nursery and it is not practical for the school to ring the office as much as they try and contact me which can be every day.

I had a partner but we recently split because of money issues. We couldn't afford to be together legally and it is too hard to maintain separate homes and finances and feel like a couple. That is a friend with benefits.

A special school might be better for my son and I thought as much from year 7 but guess what? Cuts mean that because my son can do his work alright he isnt eligible for a special school. One man from LEA told me that special schools are for kids with brain damage in wheelchairs now and not kids who can write and read. All of those are moved into mainstream he told me.

So the cuts mean that my son has to go to the only school with autism unit which is defunct due to lack of funding but people have the knowledge of what should be done at least. However he gets no support there so they'll regularly need me to get him. Lack of funding also means that he cannot go to a special school because they are now for people more disabled than him.

All of these things mean I can only work 3 hours a day because the only feasible job I could find that just happens to be in my field was to do the mornings in a nursery as a NVQ level 2 employee. I meet him when I can but it would cost me £15 a week to do so unless I walked there which would take an hour out of the other things that need doing. Therefore I only meet him when it combines with some other task which makes the bus fare worthwhile. I still can't work in the afternoons though because I have to be "on call" for him. If he needs to be collected which he often does, even if it is at home time, they will not let him leave alone distressed or in a cab. So either me,his dad,or my recent ex has to collect him. His dad lives 150 miles away. My recent ex had to work all the hours God sends to provide for us all (he has kids himself). So it is me.

MY UC housing allowances does not cover my housing costs by £150 so that comes out of our living expenses. That's because the HLA is low, we are in private accommodation with no chance of local social housing for years and we need to live somewhere he can easily get to the places he needs to get to alone. This independence frankly means that he is more likely to put money back in society at some point. Moving would set us back and the nationwide shortage of services means that moving somewhere cheap and rural would mean he wouldn't get even the support he gets now.

Long story not so short we live on 100 pound a month ( including his DLA) after I've paid to not be evicted and to keep in contact with each other. That includes food, travel for me, clothes, treats, replacement furniture, everything. The only luxury we have according to budgeting sites is wifi but really my son would never pass his GCSEs if he didnt have good internet at home. Streaming off of a phone to laptop does not work well enough to access all the complex websites and programmes he has to use just to do compulsory homework. Good GSCEs means he will more likely earn money and pay taxes.

His dad gives CM but considering he has 6 dependents in his home, has bipolar and works "part time" according to them, it is barely enough for my son to have some pocket money for the trips he takes out with a social group of local SEND kids and the occasional treat related to his hobby which I use to get him to do stuff that he doesnt want to do and likely wont get support doing anyway because of the cuts. I mean things like completing assessments and exams. They freak him out big time.

I know this is pathetic and long but honestly AIBU to ask what do I do?

Every turn the Tories have cut off our options. I haven't bought a pair of knickers since last Xmas and they were from Primark and I'm literally praying someone buys me some this year because they are ripped and off colour. That is my life now. I'd love to go back to the job I trained so hard for given that I had a shit family who abused me and stopped me finishing school but the support just isn't there for me to leave my son. What do we do when BJ will just take more and more away and make it even harder for people like me who want to work but can't with such shit public services?

OP posts:
SmoothOrange · 13/12/2019 12:32

you choose to bring a child into this world..it falls on you to provide for him. Not anyone else

I LOVE THE TORIES

cunts

Sandaled · 13/12/2019 12:32

A nursery is never going to allow you to carry a phone on your person, but it sounds like you have a good skillset and amount of experience; you say you enjoy working in nurseries, but is there anything else with your qualifications etc which would allow you to have more flexibility and access to your phone? Due to nursery numbers I imagine they can't offer any flexibility at all. If you feel his school environment would be suitable if his ECHP was honoured, then they need to do 100% not 10, there is advice on the Scope website on how to contest it. Not ideal I know, you shouldn't have to fight for it, but there is a system to do so and people who can hopefully support you. I don't really get the part about your partner, I gather you aren't together as it makes you financially worse off, but where is he living? Would one lot not be better, or would it wipe out some of the housing money? Have you spoken to CAB?

Sandaled · 13/12/2019 12:33

I'm not conservative btw, just have encountered similar things in my work (sadly), and hopefully it might be of help.

ChristaMSieland · 13/12/2019 12:33

So you and your OH decided to live apart so you would get more tax credits, benefits?

Your OH has a number of other dependents and cannot work full time?

I think OP's recent ex and her son's dad are two separate people @CuriousaboutSamphire

You have worked out some odd math on possible earnings that would mean you take home less than 50% of what you earn.

She is talking about the withdrawal rate on the benefits regime plus tax and NI. It's correct. Anyone on that system has to earn £3 to be £1 better off (until they are on a good salary and free and clear of the system - difficult for carers).

FVFrog · 13/12/2019 12:34

The “freelance and earn £20+ per hour flexibly from home” is not that easy. I am self employed. There is no sick pay, no holiday pay and if someone cancels or I can’t work for any reason I don’t earn. When you actually take all these things into consideration being self employed is extremely precarious and your actual “hourly” rate is much less. I am sorry your son is not getting the help he needs OP. Yes OP chose to have a child but what kind of society do we want to live in?? I do not want to live in a society where we pat ourselves on the back and aren’t we wonderful when we raise £43 million for Children in Need and vote for a government which spends £100million advertising bloody Brexit!

CuriousaboutSamphire · 13/12/2019 12:36

Ah! That makes more sense. Partner and math! Thanks Christa

But the advice still stands. Take stock, take a moment to stop panicked, chaotic thinking, take all advice and help you can identify and absolutely best of luck working through it!

Motoko · 13/12/2019 12:37

I should be shocked at the results of the poll, but sadly, I'm not. People don't give a fuck about others who are worse off than them. You didn't plan on having a child with special needs for fuck's sake! And politics is the reason why OP's son is not getting the support that he should legally be getting. Which means that OP can't work full time, in the role she has trained for.

OP, I can't advise you, but I want you to know you have my utmost sympathy. Flowers

WiseUpJanetWeiss · 13/12/2019 12:39

you choose to bring a child into this world..it falls on you to provide for him. Not anyone else

Fucking hell. You are presumably childless/child free.

WorldsOnFire · 13/12/2019 12:41

💐 for your situation but why are you blaming politics when you have no actual evidence it would have been different under a different party? If you’re sat there convinced that a bunch of empty, badly thought out promise were any sort of guarantee things would have been better for you then YABVU.

You say it’s impossible for you to work but I doubt that. My sibling is both physically disabled and has a chronic disease- My DM found many ways to work 👍🏻 and joined a network of parents in the same situation. All found ‘non conventional’ ways to work whilst caring for very unwell/disabled children (many much more so than your DS).

What you seem to mean is you can’t work in the specific role you trained for, in a regular hours position but you are not entitled to that! When you have a child you take the risk that your life may no longer be what you wanted/planned it to be if they have additional needs. A friend of ours is in quite a senior educational role says that low level SEND and MH issues are becoming such common place in secondary schools that there’s more kids with them than without - but there is limited funding, there will always be limited funding so it goes to those who need it most.

FWIW my sibling also was let down by the ‘the system’ and has a crap time at secondary - but patients in the NHS, Elderly people in care, children in care...so many people are ‘let down’ everyday because there isn’t enough money to do a great job for everyone. JC’s magical money forest wasn’t going to change that 🤔 and FWIW I don’t think many people ‘struggling’ on low income fully grasp the ‘squeezed middle’ reality and how all those earners £50-£100k who they seem to think should be shaken down for even more don’t actually have anymore to give.

What I’m saying is that you and your DS are far from alone but labour were unlikely to solve all your problems and maybe you need to just rethink your career. With qualifications like yours there’s lots of flexible childcare you could do!

underneaththeash · 13/12/2019 12:42

The first thing you can do is make sure your son's EHCP is being enforced. This webpage lists how you can do this

[https://www.ipsea.org.uk/enforcing-your-ehc-plan]

The phone thing must be incredibly annoying, if he's not getting special help anyway, would it not be easier moving him to another school that did allow phones? You can also buy trackers very cheaply on eBay, which you can sew into his school bag. He won't be able to contact you, but at least you'll know where he is.

taratill · 13/12/2019 12:43

OP I'm a parent of 2 SEN children who has had to change working pattern because there is no school to meet their needs. This is due to cuts in SEN funding. If there were appropriate schools then I would be able to work more and I would be able to contribute to society more.

It is not my fault, nor yours, that SEN funding cuts are causing you hardship.

I don't believe the OP is saying she wants handouts. She is stating that cuts to funding in education, particularly SEN funding have resulted in her position.

I've got a 13 year old who is suicidal at the moment and who can't access CAMHS due to cuts in that service which means they no longer assist children on the autistic spectrum. I am concerned for his safety.

It's all well and good saying it is the OP or my responsibility to make changes to our lives, we've already done that.

Sadly unless you are in this situation you will never understand the impact of these issues.

horse4course · 13/12/2019 12:43

@JeffreeStar the economy needs new workers and women do the unpaid work of producing and raising them.

It's a lottery as to whether you have a child with special needs or not. By your reasoning, only millionaires would have children. Even if that wasn't heartless and socially abhorrent, it would also ruin the economy.

So keep your libertarian low-tax nonsense to yourself. It is in everyone's interest that the state provides enough funding for people in OP's situation.

taratill · 13/12/2019 12:45

@WorldsOnFire

There is evidence it would be different under another party. The Tory manifesto on SEN funding, Autism and Mental health are the least favourable to people with those needs.

Of course politics plays a part, how simplistic to believe it does not.

Rainbowhairdontcare · 13/12/2019 12:46

There's also work from home . I e five QS for Google at ,£9 pH but you can do it anywhere/ anytime. I do get the partner thing, I'm worse off than if I lived on my own

PurpleFrames · 13/12/2019 12:46

Just wanted to say sorry OP. I can't relate to your situation but I'm also in a black hole of services caused by cuts and a attitude from the wider public frankly that "I'm doing alright so I don't believe what you say". I wish you all the best and never feel alone plenty of people get it x

angemorange · 13/12/2019 12:47

You have my sympathy OP, when my DC were young I found working part-time was better money-wise and i was still entitled to some support.
I'd recommend you look for some support/advice from parents in a similar situation or groups in the voluntary and community sector. They might have ideas/advice you haven't thought of.

Good luck, sending you some good karma Smile

taratill · 13/12/2019 12:47

OP from a practical point of view request an Emergency Review of EHCP and speak to IPSEA the link was posted earlier, they are really helpful , although it can be quite challenging to arrange a call back due to the demand for the service.

WorldsOnFire · 13/12/2019 12:47

you choose to bring a child into this world..it falls on you to provide for him. Not anyone else

There is a responsibility (rightly so) that society provide a basic level of living for everyone in the U.K. the benefit system is a great security net for everyone and anyone’s circumstances can change both quickly and drastically. However ‘a basic standard of living’ means food, a roof, heat and running water... not a TV, gadget, takeaway, car or yearly holiday. On MN you see a lot of people angry that their minimum wage/pt Jobs/UC doesn’t provide them with a somewhat ‘comfortable’ lifestyle which they consider ‘basic’.

Kittygirl47 · 13/12/2019 12:49

“ Fucking hell. You are presumably childless/child free”

So what if they are?

taratill · 13/12/2019 12:51

@WorldsOnFire

Are you deliberately missing the point?

This is not about money and lifestyle it is about funding cuts meaning that disabled children do not receive their basic right to an education and that parents are having to give up work to facilitate that.

Rainbowhairdontcare · 13/12/2019 12:54

On MN you see a lot of people angry that their minimum wage/pt Jobs/UC doesn’t provide them with a somewhat ‘comfortable’ lifestyle which they consider ‘basic

I think you're partly wrong there. In an economically advanced country/society I would expect that a FT MW job does provide for some.of those that you consider luxuries.

WorldsOnFire · 13/12/2019 12:54

@taratill

Of course politics plays a part, how simplistic to believe it does not.

Plays a part? Yes
Is to blame? No 🤔 the Tory manifesto may have been ‘the least favourable’ but there’s absolutely nothing to evidence that other parties would have followed through on their promises or that (specifically labour) had any reasonable way to fund all the things they were promising.

OP would be reasonable to hope for a slight improvement over time - but unreasonable to think it would have been an instant/ quick fix.

x2boys · 13/12/2019 12:55

I have a severely autistic non verbal child and quite frankly I don,t think.anything would have changed under labour,regarding your son,s EHCP the school cannot just decide to only adhere to10% of it,it's legal document and if they do not follow it they are breaking the law ,do you have an independent advisory service in your LEA? If so you need to contact them and get them to help you with the schooling issue ,schol,s shouldn't be allowed to get away with this kind of crap.

HepzibahGreen · 13/12/2019 12:56

This is just a practical suggestion but why can't your son take his phone, to school, turn it off and put it in his bag or locker when he gets there? The school don't check bags do they?
My dc aren't allowed phones in school and thats what all the kids do.

ZebrasAreHorsesInPyjamas · 13/12/2019 12:59

I am genuinely sorry you are struggling and I hate to say it, but even if another party had got in, there is no guarantee that things would be better just because they said they would spend more in that department. And even if they did decide that's where their money was going, it would be years before anything was in place and you saw any benefit... That is politics for you, they promise to spend and make life better for everyone, but in the end, there is limited funds. So in reality, if the health services benefit then something, perhaps schooling, suffers. People vote for the party that promises to fix the things that affects their lives. Sad

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