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 This sometimes mean he will cry or become very withdrawn and unable to sit in lessons.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

Sounds tough Op. I think you need to look at other work options - could you be a childminder instead? I'm curious about the phone issue. If your son has to travel to school on his own because you are at work where you cant use your phone who would he be phoning?

dla is supposed to be filled out for the worst days of the week. If his anxiety means you have to go get him rather than him travel 3 times a week that’s enough for lower dla if you word it correctly.

If he is medically unable to access education due to anxiety then flexi school. You can have doctors sign a sick note (we did this with then 4 yr olds) or you can have it written in his echp (again we have this now, one has it written to do 4 days the other to do a couple of mornings over flexible days) or just start picking him up at lunch time and do it. You can follow gcse course work at home, and the school won’t want awful attendance because they get penalised for this so will work with you. You can flexi school until there’s space at the better school and flexi schooling will likely reduce his anxiety. Check out your local home Ed networks, there’s a huge amount in the middle of nowhere where I am, in London it’s supposed to be even more impressive.

You can also look into medication, it’s helped both of my two who are much younger. And look into council funding- what we get replaces the direct payments system and doesn’t effect benefits in any way. It’s only to go directly on kids but here atleast it’s easy to choose how to spend it. The benefit to my kids mh is huge and I know plenty parents use it to cover a form of childcare like ‘mentor’ or similar.

I have never been a Tory voter but I don’t think this or how much you work/claim is the main issue here or your ex and child’s father- none of that is immediate. Your child’s anxiety and his education is the issue and while it sucks to be drowning in this system (and I am, like I say I expect I’ll be trapped fully home Ed-ing one once she’s secondary age despite how little of this she’s able to access, despite my own disabilities, while trying to help her sis access school) we have to find ways to manoeuvre to find a way that works for them. I know this is exhausting and draining and feels impossible but if you haven’t even looked into home Ed or flexi schooling options then you still have opportunities that might work better for him. If it gets to the stage where he is so anxious he won’t leave the house you won’t have any choice (and I ended up with this with twin 5 yr olds) and it might be worth searching all the options out there for how these parents manage it to give you both choices now before it ends up there.

@Cutesbabasmummy

I can almost safely say he is okay until 12pm. That's why I work mornings. The school know this and if an emergency does happen before, they try and deal with it until 12. They arent useless or horrible, they just don't have the resources so will cut corners where they can.

@sinkgirl

I have fought. That's why my son gets more than others in the school. For example, I insist on a 121 TA for 2 lessons a week which means that the other kids who are also meant to be supported by the same TA in that class go without. That's not fair on them at all but I have to do for my son. There is no more the school can do without just taking away everything from someone else.

The main reason I haven't considered home education seriously is because several professionals attached to my son felt it would make his issues worse. They feel challenging his anxiety and exposing him to triggers is best in the long run and I agree to an extent. Things are different now though. I'll discuss it with him.

Have a look into them your local home Ed network where you are first. See how other parents manage this. There are plenty who use options like colleges for short courses and use online independent study courses and lots swap duties like one parent tutors a few while another takes care of the little kids. If you have a good idea how it works local to you, how others parents with kids with send find it, then you’ll be in a better position to discuss it with him and the professionals involved. You don’t have to fully home Ed or with draw him from school (and actually not withdrawing him forces the schools to push Lea for the support they need as they don’t want penalised for poor attendance). We never officially withdrew ours. I only know a little about the secondary options where we are, which according to parents here are very poor for send issues compared to other areas (although to me everything in England seems way better funded than the poor areas of Scotland I came from/worked in similar schools there) and there’s secondary’s here where kids do split placements, including things like afternoons at equine colleges/farm placements/at home tutoring funded by the Lea/TA’s who go out to peoples homes to pick up the school refusing kids and so on. If this is supposedly bad here for send options (none of which will sadly work for my most extreme kid) there must be other options to fight for in other areas, it’s just incredibly hard to find out about these, never mind access them. But LEA’s have a legal responsibility to provide education that children can access and you just have to keep fighting. Ignore what the school take from other kids- that’s the school and the lea responsibility, yours is just your son. I know it’s exhausting to have to keep fighting, I have an amazing dh and we don’t have money worries (although we never have spare either) so I have no idea how tough that must be, but I also have 2 with extreme send issues that have meant they have never accessed education without extreme school refusal and I have several physical, mental health and neurodevelopmental disabilities myself, with zero family support other than dh. So it’s a different bag of exhaustion and while I can’t imagine how hard it must be to do this as a single parent I do know the fight is killing us parents and that it’s beyond unfair we should be in this position- but that doesn’t change that we are and that we need to find a way for our kids. The thing about home Ed networks is you might find a huge amount of support for yourself as well. I know lots of parents through send support groups, but they are in our position (although their kids go to school) and the difference between these friends (who I love and value) and the variety of support, information and ideas I’ve seen through the little my dc can access home Ed is huge. So many parents there seem to be juggling such a variety of circumstances and successfully managing to share skills, to share education and childcare and work around doing this, many who have children with send issues who thrive within these supportive circles. Considering your work skills you could be an asset to them and find plenty of parents who will contribute to your child’s education and confidence and social circles, all while not having to force him to school. One of the biggest things that stood out to me about the older kids within home Ed circles is how independent they are with study- which is a way better skill to learn for adulthood. There will no doubt he home Ed boards here, there’s tones of Facebook ones- look into it first before you suggest to your son or hcp. Look into not withdrawing him from school but how you could force them into flexi schooling (and like I say my kids forced the schools into this through school refusal, so they can agree if it’s necessary) and what you would do in the afternoons to support his education and emotional and social wellbeing. Check what groups you might try which days, check online courses, check how you’d get his excesise in the day, what big home Ed events are happening at local museums etc (which tend to be free or discounted if through home Ed groups). It can feel daunting to look outside the box if your used to fighting the system but home Ed options provide so much more to think about. You’d be surprised how little time academic work actually takes up and how easy it is to enable this education while leaving lots of time free for boosting emotional well-being and social skills that even the best schools often miss, while taking away the fight that’s setting off his anxiety.

Obviously everything is a debate but I can't get fully behind taking from other disadvantaged children to get what mine is entitled to. My son is privileged because he has an English speaking mother with some baggage but mostly able to fight their corner. Many of those other children do not. I do it but I do it reluctantly. It is not something I take pride in.

Hi are you able to reply to my earlier message (s) about what you do with your spare time when not working and not collecting your son?

I had an idea to help you but you haven't replied to my previous messages.

Fighting for your son to get his support doesn’t take away from other kids, it’s not their support in the first place it’s your sons. If they need support then it’s the schools job to fight the Lea for the other kids.

There’s a bit of a general myth that ehcp funding s is exclusively for the kids that it’s awarded to. That’s never been the case, the money is to enable the school to meet your child’s needs, and sometimes that benefits other kids - like my kids ta getting specialist training benefits the kids she works with next year, and things like social and emotional skills groups benefit other kids too. But if you have designated 1 2 1 time (and mine does have a full time 1 2 1) then that’s for your kid. It needs to be specified that’s just for your kid in the ehcp but if it is that’s not taking away from other kids, as it’s never been there support in the first place. The fact the system is unfair is no reason not to fight for your kid to get what he needs, it’s not helping the other kids as it could be covering up how much they need their own extra support and stopping school pushing for more for them. I love my kids friends, I do a lot of taking them for days out or running them all to class parties, as many families are worse off than we are or have many more kids with more problems, but I would never not fight for my kids ehcps to be followed just because it might mean their friends miss out, because it’s the schools job to sort out their support not my kids.