To ask Tory voters what I do now.

[GailCindy]

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 This sometimes mean he will cry or become very withdrawn and unable to sit in lessons.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?

Thegardenfairy OP's first post explains that she worked full time until her child was 12 and the situation at school became untenable, and would like to be able to work more.

She has given reasons why this isn't possible; I don't think having a child with SEND in a school which can't meet his needs is an 'excuse'. It's simply a sad fact that OP is working around.

OP's posts are about her benefits because, um let me think, if you're really hard up, money is more important to you on a day-to-day basis than if you're comfortably off.

If you actually THINK about OP's situation, the comments like 'she's not a grafter' are clearly so off the mark.

If you actually THINK about OP's situation, the comments like 'she's not a grafter' are clearly so off the mark

In your opinion. ...

Hopefully OP will be back with answers soon.

@TheGardenFairy why don't you just be honest.

You aren't on this thread to give advice or support.

You are here to judge. You are here to bash someone that you consider is asking for handouts. You have no empathy for the barriers faced by parents of disabled children in accessing paid and regular employment and you are selectively ignoring the evidence that she and others are sharing.

Just own your prejudices.

I have a severely disabled child. I didn't vote Labour

how many EU nationals for you think are in this country and sending money back ie not with their entire families here and therefore need to house them all.
Plenty and plenty. A typical profile would be a single Eastern European woman in her late 40's - early 50's, with a teaching or nursing qualification from back home (but is unable to learn English to a sufficient degree to get a professional role in this field in the UK), currently renting a box room somewhere and working a couple of zero-hours contracts as a cleaner. Sending money to put her children through uni back home.

I can pretty much guarantee you that if you are in a big city, your local cleaning agency has several dozen of profiles like this on their books.

There are loads of EU citizens in the city where I live often living many to a house. My son was in hospital last weekend and three out of the six in the bay were polish/ Albanian, the one that spoke the best english was translating for the nurses.

Parents are having to go to tribunal for their kids and as there aren't enough maintained specialist schools local authorities ( who lose most tribunals) are then having to pay for private specialist schools from their budgets.

Yes, this is why I think OP needs to really push the issue with school. She will win a tribunal and she will get the support for her child. This, in turn will free her up so that she can work during the day when her child is at school.

MissFliss I am interested in what, exactly, OP expects the govt to do for her. She is already claiming benefits, DLA and housing. Her posts are mostly about her finances rather than her child. She is already in talks with school about options for her child.

What exactly do you want this govt to do OP? What do you think a Labour Govt would have done differently?

SympatheticSwan let me see...those would be the EU nationals who Boris doesn’t want feeling settled here.

And there we have the problem ...we want to leave the EU having blamed them for all our ills. However seemingly they are good enough to be persuaded to look after our children who may have additional needs which they may or may not be qualified to cope with.

That’s until they leave because our PM has openly said they are not welcome.

Who do you suggest provides that specialised child care once they go?

Or should we perhaps accept that while services are cut to the bone then parents need to do the childcare and be encouraged to claim every benefit they are entitled to?

I went with the second....five years out of work supporting an autistic child. I claimed full benefits during that time and I have no regrets for claiming every penny that I was entitled to. No I didn’t want someone who didn’t know my child and had no idea how to manage his meltdowns anywhere near him.

oliversarmy there is a massive difference between a preschooler and I child with SEND. You obviously have no experience or comprehension of that, hence the useless advice.

How can you do such a leap in your account of what should happen to just "when she gets her 3 bed property" have you any idea of how long that could take?

And again who pays for this move to be closer to her ex partner who has 6 kids, depression and doesn't work.

You won't get sympathy from people who don't live it they don't understand the utter exhaustion of every day, the constant grind.
I think you need to print out your list and break it down. Some it is not governmental but the lack of support will add. You need to make a plan.
Start with the EHCP because this is a legal document and if they are not following it you need to get a review. It might be that the school can't meet need and a change of provision needed, I cannot tell you how much difference it has made to our lives. Transport is not an issue as it is provided but like everything in SENDs it is designed to keep you poor, you HAVE to be in for collection and drop off which annoys the shit out of me as both my children are capable of being alone for an hour or so, so long as I haven't asked them to do anything. Oh and for a year one of my was gone alone which was fine apparently! Ss didn't have any concerns!
So back to EHCP this will mean loads of meetings, which are a piece of piss when you work! (Had to laugh at the get a job to work round, I am the only one of my S/N parent friends who works part time the rest don't work because they don't get any outside help, family do not volunteer to do any childcare for our children.

Next get Carers if you earn under the limit only issue you have is if you study you might not be able to claim. A few people make the mistake of thinking it is only face to face hours that count against you but it includes the personal study time as well but you might be able to go part time dependant on your course if this is a issue. If you can do some work you can discount childcare and pension against you income so it pays to earn a bit more and pay a pension and organise some child care. It's only £65ish a week but It can make all the difference. You need mid rate DLA

As a carer you are covered by the Equality Act 2010 with employment and as a parent legally you can get unpaid carers leave but it is no good for emergency's and of course is unpaid

I don't understand why that person thinks I have 850 left after outgoings. All my wages and universal credit cover are my rent and council tax and our mobile phone tariffs (PAYG before anyone asks). Out of what I have left, I still have to pay water, wifi, TV license,replace any necessary furniture, clothes, cleaning products,son's hobby and social life, insurance on gadgets and appliances (we had fridge freezer only as white goods), any school expenses, everything else basically. Because you can only afford tat, things need replacing sooner

I didn't vote Tory.

Even worse for OP her son will soon be switched from DLA to PIP. 70% of claimants I believe lose their claims & have to appeal which takes months. In the meantime they receive no money.

I know because I lost my DLA & my claim for PIP. I can only work part time as tiredness & stress cause breakthrough symptoms of psychosis for me. Currently waiting to appeal. Luckily my wider family can help me out financially but OP doesn't have this option.

Regarding cuts, I work in a hospital where we see the effects of the cuts in social care, also the gradual privatisation of the NHS.
My friend is a TA & has seen other TA colleagues made redundant.

Those saying OP needs to earn £20 per hour - on what planet can she do that?!
Please let me know too as at present I only earn £8 hour & I work hard.

And suggesting OP gets a life coach or becomes a private nanny or a tutor - did you read her OP?? About how she can't even afford a pair of pants let alone a life coach or training, & she needs to work pt flexible hours to be available for her SN son.

The idea that I should be alright with getting 7 pounds for a 20 pound hour because I have a disabled son and am reliant on benefits as his school isnt able to support him shows the values of Tory voters.

@GailCindy
Genuinely don't bother trying to change the views of people on here who won't get it.

Please do read the posts from lots of us who do.

I'm not being trite when I say that the most impactful thing you can do that will improve everything over time is to sort your son out.

You have received very very poor advice regarding his education and you need to focus entirely on getting his schooling sorted. From that everything else will improve and you have a far better chance of being able to progress in a job enough to help your finances.

The one thing you can do now is to collect all the paperwork - and Contact SOS!SEN or SENDIAS to get an appointment from Their free advocacy and advice service.

It isn't poor advice. It is advice which reflects the reality of the situation. Every relevant agency or charity involved in SEND students and EHCPs or anything like that have been involved but they cannot do more than get the school to formally report that they are unable to meet the terms set in the EHCP. There is nothing more they can do.

If the school are denying that they are not fulfilling the EHCP, that is different. They can help you prove that and we did that within the first few months. Once they acknowledge failure, you're sort of stuck unless there are things they arent doing to improve. They are trying but there is no incentive for people to take these jobs atm and when they do, they do not stay because of the ridiculous workload.

OP would child minding give you more flexibility? My cousin became a part time nanny rather than stay on as a nursery/reception teacher when she had her daughter, as it was more flexible

@GailCindy I'm sorry but you have received poor advice.

The comment about special schools in your Opening Post is extraordinarily poor advice.

You have to fight for every last thing with schools and Local Authorities. You have to use the tribunal route at most junctures. At the very least you need to ensure that the EHCP and EHCNA has been written with specificity in mind.

If you don't want my advice that is fine - I don't mind at all. I genuinely urge you to contact the free advocacy services that exist where you get the benefit of expert volunteers who can review your EHCP and explain how the school and LA may or may not be able to meet need and advise you on a course of action.

Good luck.

@missfliss

Special schools do not have the capacity or resources to take students who could get along in mainstream school. Theoretically they should be able to but the reality is different.

A tribunal only works if the school are not admitting that they are unable to fulfil the criteria. The school are on my side and have acknowledged the difficulties. The priority now is to keep him and others safe at school.

Thank you for your support but you're really not very well versed in the real world for people like me.

@LionelRitchieStoleMyNotebook

Child minding is an option for the future but right now I'm having to collect my son too often for that to be viable.

@GailCindy

Wow.

That's a bit much.

My son goes to a special school. He can read and write.

My husband teaches in one.

I'm out.

@missfliss

Again, what you could get even 3 years ago compared to the situation now is very different. A class teacher has no idea of the complexity of the admission or transfer process. I know kids who have far fewer problems than my son but with the same or similar diagnosis. They too are academically able and are in a specialist school but they went there years ago. Things are different now.

Final word from me before you tell me that I don't know the " real world."

My son was in mainstream school until July 2019. The Local Authority said his mainstream could meet needs.

We have been dealing with advocates and experts for a year. Had a tribunal date booked and the LA eventually conceded on the weight of evidence provided that his needs could not be met in his mainstream school. They were then forced to name a school that could meet his needs.

His needs were not about academic attainment only - it was predominantly about his sensory issues ( as advices occupational therapist) that swayed the evidence.

I have spent a year fighting. I am exhausted and still recovering from it to be honest. I am also working Full Time.

Now you don't want to listen, that's fine. But don't please tell me that I don't understand the real world.

My son is so much better now. But I had to shift my whole mindset and fight and play the maze of information.

I hope you get the help you need. Seriously though I am out now.

Best of luck OP

They were then forced to name a school that could meet his needs

Do you think this might have been key to why your son is now in a suitable school?

So you are clear I am being sarcastic here. Half of the problem with him moving schools is that nobody (including me) can name a special school that has places for his age group and needs and would be more appropriate than where he is now. We have visited probably fifteen different schools (some specialist, some mainstream).