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 This sometimes mean he will cry or become very withdrawn and unable to sit in lessons.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

I don’t think anyone is advocating benefit fraud? How much would you be on with your partner living with you as opposed to you both getting living separately?
Would the extra help/childcare not be of an outweighing benefit, plus a more stable situation for your son?
You could then take on work that fits the times your partner doesn’t?

Not a Tory voter but can understand you feeling frightened of the future.
Your life sounds very complex, I presume you have checked that your getting all the help you can.
Is it worth going to citizens advice to see if they have any suggestions ?

kendodd

Fuck off. I voted Tory and I have a son with special needs. I voted for the good of the country. To say I don’t give a shit about people because I voted Tory is like saying labour voters only give a shit about their benefits. Tbh that’s what the OP is sounding like.

Did the OP come back?

This is a really interesting post and your recent update shows you have huge empathy for others as well as your son.

For balance OP can I just ask what you do when your son is at school and you are on call (now that the odd jobs have dried up). It's just I have a reasonable idea as to what could help here.

Also, understand if you don't want to say but can I ask roughly what area you live in?

This election was about Brexit - not internal policy. Conservatives won because the majority of people want that managed as their number one priority.

It doesnt mean those voters are mean, heartless or selfish.

With Brexit complete, trade can be settled and the country can begin to grow an economy to support its people.

Incidentally my DM died as a direct result of the funding crisis in the NHS so I am personally affected by the state of the economy - but labour was in government then. But I dont blame one party, the system is (and has been for decades) creaking under the weight of people's expectations.

Hi OP.

I don't think I can advise on all the issues but I do understand the impact having a SEND child can have on your ability to work.

I think you need to do one thing at a time.

Literally nothing is going to get better until your child gets the support and school environment he needs.

With the right school and support he will cope better and become more independent - which in turn will make your situation and flexibility easier to manage.
It'll be a slow turnaround but you are going to have to take it one step at a time.

To the poster who said this:

OP, you do realise that you should not believe what the LA employees tell you? They are your enemy in this. You are the advocate for your child. Work out what he really needs to be able to access an appropriate education and ask for it. Go to tribunal if needs be (likely).

They are absolutely correct.

There are free and low cost charities that can advise you really well. SOS!SEN and IPSEA.

Our son (8)is now in the local maintained special school and is so much better. He is very able ( ASD and Dyslexia) but was not coping in mainstream.

Special schools are really not only for profoundly physically disabled children, they will differentiate often for more able kids by matching them to peer group classes not just age.

We are very very fortunate that he is at this school and that we have both been able to work full time too. My husband is a retrained teacher ( we had to take years of debt to achieve this whilst I supported the family) and we pay someone to come in everyday after school and care for him at home till we get back from work. It's expensive but keeps us earning.

Also no family support.

My advice - get the core issue of your son helped first - other steps can only start to improve once that is done.

People really really don't understand how having SEND children impacts families, especially if no support

Also I have another idea.

I work at a Foodbank and live in a very caring community.

I would advise you to see your GP, CAB, sons teacher etc to get a referral to the Foodbank. This will hep by giving you a short term crisis package (you can't do this long term as Foodbank are meant only for crisis in the short term). Make sure you tell them of any extra such as things that might help your son in his diet as they will accommodate those. You can also ask for sanitary towels, cleaning products, shampoo etc which would free up some cash short term.

However, once there you will have made contact with a network of empathetic people who can be incredibly supportive in other ways. If you came to see us this is what we would do (Trussel Trust):-

1. Give you a nice of tea, sit down for a chat and listen to you. This is only if required as not everybody wants to. Maybe not the first time you visit as often people are very anxious about walking through the door / accepting help. Maybe the first time just pop in, collect your parcel and leave.

Then go back again. If you wanted a chat, we would run through other forms of poverty such as fuel poverty and ensure you are getting ALL the possible support you need. Different areas have different initiatives. They may also be able to give you supermarket vouchers or clothing depending on what initiatives they have locally and how well they fundraise.

We would never judge, never over promise. Just listen and maybe hold your hand.

1. IF and only if you wanted we would put out a call on social media. Our local community is very supportive. Using our local fb groups we have made incredible targeted difference to families. This has included putting together complete home packages for women fleeing violence, getting specific groups to help with volunteering where needed and yes we could even get you clothing. We are careful not to identify clients.

We are always amazed at how much people want to help with specifics. We get inundated by the local community when we do this. It affects people so much more than asking for cash. We have had some amazing success stories in making a huge difference in specific areas of their lives they hadn't even thought they could access hep in.

It would be incredible if you lived in my area as I know we could make a difference. We also have access to other schemes that I know you would benefit from which is why I asked you the questions above.

@Illeana
It’s also not their fault that you can’t work because your son needs you to be on call for him.

I am so intrigued as to where these sorts of views come from. Whichever party you support do you genuinely think that there shouldn't be support for disabled and SEN kids and their families?

You sound like you have a real issue to be honest. I doubt most Conservatives would support your stance.

@Shoeshelpplease that sounds really lovely. I hope the OP is able to find that reflected in her area.

I don't understand why 'fault' is even up for discussion.

It doesn't achieve anything. Even if everyone agrees that everything is the OP's fault, it doesn't change the fact that she and her son need help.

Boris only got 330,000 more votes than Theresa May, or an extra 1.2% of the vote (turnout was lower). It was the collapse of the Labour vote in working class areas that caused this election result.

The OP is trapped due to her son's father living so far away and not providing practical help, two heads are better than one at coping with this situation because there is a bit more flexibility.

I have a colleague who has 2 children with SEN but her and her DH both work PT so they can share their care because it's impossible to get specialist care to support their DC. My colleague and her DH are lucky though because they are both highly skilled and so have a well above average income even with both working PT. Because they are both so highly skilled both employers want to retain them by offering flexibility and PT work. Not everyone is in this situation and if you add in family breakdown people get trapped in poverty so easily. And if you're exhausted and badly fed it's incredibly hard to climb out of the hole, you just don't have the headspace for forward planning.

@CountFosco

Great post

If the Labour Party came in, theyd axe UC so people like me would get our child tax credits back. ATM they've including them in UC but the £120 a week I used to get for having a disabled son is gone. They say it is within your UC entitlement but there is nothing on your statement that says "child tax credits entitlement" and I'm 100s worse off on UC than when I was on IS + carers allowance.

You cannot claim UC and CA. They'll take your CA out of your UC entitlement. Some have found that not claiming CA and having them put that money on your UC entitlement seems to give you a few more pounds.

Working all night is not an option because someone needs to be with my son. My partner and I couldn't survive and look after our kids together. Lack of space, joint benefit claims and his need to pay CM and give his kids a decent life means he cannot carry me and my son. If I then made my son's life more challenging by not being here for him in the evenings and nights, his behaviour would escalate. It isnt easy to find professional childcare for a 14 year old 5'10 teenage boy with autism and other processing difficulties.

The Labour Party would also have given a cash injection to schools. We would have a Government that genuinely cares about SEND kids and sees that they can easily be productive members of society.

I've been to all manners of support group and charities for the past 2 or 3 years for my son. They have said there is very little they can do especially as his school has done everything they can with the resources they have. A tribunal would mean money and time and ultimately serve to help people that come after him, not him. Yet it would cost us energy, time and maybe even a bit of money. By the time it got anywhere, he would.prpbably be doing his exams.

The only answer is funding in schools so kids can have a proper education. The Tories will never do that because it suits them to have people perish in poverty as a warning to others. If capitalism was a true goal, theyd invest in every member of the workforce to have a productive army from the ground up. You'd want your street sweepers to be the epitome of health. I'm thick as shit but I know how to make money from a workforce and it isn't by keeping them hungry and scared.

So to be clear my recent ex and I have agreed our relationship is not viable at this time. We can't be great parents and also be partners. Maybe if things were different but they are not and HIS kids were ultimately suffering for it.

You need to clone yourself OP and send your double to work in a 50k job, that's the only solution that I can see other than finding a partner with a decent income (which is probably tricky and you would be flamed for).

It's fascinating I suspect the people telling you to work more hours would immediately tell you that you were unreasonable for not concentrating fully on your work because 'it isn't your employers problem' either. If you did work for cash you'd be berated for being a cheat, even though you don't have enough to live on in the first place and if you declared a bit of income here and there it would mess up your benefits and leave you worse off/ permanently on the phone.

It's so strange that people can't imagine that your scenario could have happened to them, I think it must be fear tbh. By blaming individuals I'm guessing they blank the possibility of it actually happening to them 🤔. But anyone who is married and currently pregnant could find out their partner isn't as great as they thought and find their child had additional needs.

MN becomes more and more like the Daily Mail comments.

You really don’t particularly want actual practical help do you?
You want the money. Labour didn’t get in, so you may as well get over that now as we’ve got at least another four years before your circumstances could even potentially change (without you doing something about it.)

Are you getting the carers element on your UC ? You should get that even if your earnings are too high for carers allowance . Also consider putting in a claim for discretionary housing payment with your local council though this is only short term. Does his dad pay maintenance ??

Also the first £287 of your earnings should be disregarded on UC before wages start to reduce your Uc amount. I don't understand how you have so little left even with making up the shortfall in rent . Is your child definitely on your Uc claim and you are getting the disabled child element and carers elements?

That's why I work so few hours as I've calculated with a financial advisor the way for me to work and use UC to get the maximum I can. I'm getting paid on the lowest rate for that reason. I get paid the same hourly rate as the PT 17 year old we have at the nursery. I just try to remember that keeping my CV active will be beneficial in the long term even if I only end up 20 quid better off than if I didnt work at all.

I have got a few discretionary Hosuing payments but it isn't something they give as standard despite what the literature makes you think. You have to keep applying every month. They said it is meant to be an emergency for a month or two, not a standard arrangement.

My son's dad has 3 kids, 3 stepkids and has bipolar. He works PT because FT work leaves him exhausted and exhaustion means he is more likely to have a crisis and then he can't be a dad at all. He pays me what CM says he should for someone in his position but he chose to count his stepkids as dependents but me and my partner wouldn't do that to his ex. They do have a good relationship but having an autistic young child can be very challenging for a relationship. My son clung to me and barely touched his dad until he was 5 or 6 despite his dad doing everything mostly right. It must have been hurtful and we grew apart. He lives somewhere cheap to maximise what he can give in CM. He isnt all bad. He is also stuck. They took him off DLA and he gets ESA instead which put down his income. They did this after he joined a scheme to encourage disabled people back to work. Once he got a PT temp job they said he obviously doesn't need DLA basically.

I do believe OP, that people like yourself are exactly the reason the majority of the country voted Tory. That and brexit.

I actually didn’t, but the lack of aspiration, responsibility and acceptance of the necessity for you to now do something about your situation makes me understand their point. You can’t help the hand you’ve been dealt, it’s crap, nobody’s going to deny that. But why you literally wish to do nothing to change it is beyond me.

@gypsywater I got the X1 - with leather and all that. Had to put 1750 ttowards it and my whole mobility payment. You can see what's available on the motability website.

So basically you want neither you or your partner to work full time, but have UC pay enough you both to live together

You ex needs to do what parents the country over do. Find work that works around the kids. He cant continue his job if he cant earn the money. My dp was a door man. So same situation. He had to change jobs. Just like I changed jobs when I became a single parent

What lack of aspiration? I'm desperate to work. I'm doing everything I can do to keep my CV active so I can eventually go back to earning enough to support us both.

Everything that has been suggested I have done but we are in a place where services admit that you and your family SHOULD get support but they do not have the resources to provide it. My son's school have signed letters and statements which admit that they are not able to provide most of what is on his EHCP because they have only 50% of the TA positions filled and they are unable to retain staff. After Xmas they will lose 2 more TAs. One to maternity leave (no replacement and she is working until her due date but could go into labour now) who is my son's key worker (she is key worker to 25 kids) and one who is going back to Sales. Due to the lack of support staff, they cannot safely contain my son if he freaks out. After a meltdown his tendency to self harm is higher. Before now he has seemed to calm down and went back to lesson. In between lessons he went to the toilet and bashed his head on the wall until he cut it open. The school cannot watch him 24/7 even in the best circumstance. Thankfully things have improved since then but the risk is still high. After the head bashing incident we did see a social worker who gave us advice about keeping him safe but they closed the case. They are overstretched too. The SW was a lovely woman and she said that a few years ago she could have given us much more support from her department and referred us to so many other schemes and projects but they've all gone. One thing she did say is that he shouldn't be left alone for long periods of time knowing his tendency to self harm.

I cant get any more help with rent. I have exhausted that option. You can find out about discretionary housing payments in a Google search and on your UC page but they are not designed to be ongoing payments. Leaving my son who self harms alone all night is not an option. If the fire alarm went off because there was a fire he would freeze and hide in his room because the noise would be so overwhelming. Yes I have looked into alarms for deaf people but they would not wake him up unless you got the very expensive vibrating ones which my LL probably would not let me install.

Would you leave your son all night to work knowing he could have had a terrible day and could come home and self harm or even kill himself?

@Marleyisme

My recent ex does work full time (about 10 hours a day, 5 days a week). My son's dad does not work fulltime because he is disabled.