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 This sometimes mean he will cry or become very withdrawn and unable to sit in lessons.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

So literally no school can/will meet his needs ?
Then home school him rather than put yourselves all through the trauma

I cant teach him GCSEs! I didnt pass them myself first time. He did have tutoring PT and PT school at one point but it had more disadvantages than benefits.

Sounds like you’re fucked then since every suggestion everyone’s come up with you can’t even explore.
Have a nice Christmas

@Dragongirl10 - you're a charmer. This has everything to do with politics & it won't get better soon.

Inliverpool sadly that is sometimes the reality for parents whose children have additional needs.

In addition many local authorities are failing and being assessed as such by the CQC and OFSTED.

If your child doesn’t easily fit in anywhere then there’s no guarantee you’ll get enough support from the services which should be helping.

DuckWillow - if it was me I’d be escorting if that’s what it took to pay for private school, but whatever

Ah....parents of SEN children should be escorting eh? Heard it all now.

No what needs to happen is that the Local Authority do its job properly and look to the private sector if the State sector cannot provide an adequate education.

Sadly this does not happen due to cost and this IS a political issue. I can only hope that the new Govt will look at the failures in the SEND system (which have been widely publicised and have included cross party reviews) and accept funding needs to increase.

@GailCindy2
We all have the bills you have listed to pay, it is called being an adult! Do you think just because you are on a low wage you should not have to pay them.
I have 2 children with additional needs, I am grateful for all the support they receive all I can see in your posts is the pity me, actually working part time you are getting above the national wage working less than half the hours.

Also you don’t only earn 7 out of the £20 you earn, you keep your wages and your full entitlement is reduced by 67p so in fact you are earning 1.33 For every pound you until your entitlement is wiped out.

Right I haven’t read the full thread so I will. Has the OP said anywhere that she shouldn’t have to pay bills?

I would read the whole post, as I stated we all have bills to pay

DuckWillow - i said that’s what I’d do if all other options failed which let’s face it, none of the many alternatives have been acceptable so far to the OP

Op- have you looked at academy’s in your area?

I have 10 yr old twins with asc, pda, adhd & gad. While we are still dealing with primary schools we have found academies are way more willing to be flexible with adapting to their needs than any other school would. I currently have one mostly home educated who sometime goes into to a specialist placement if she can manage, it’s taken 5 yrs to get to this stage and they did everything they could to adapt and build to this- certain teachers have been in my home so many times they have their own mugs for coffee, all of which they did before she was officially registered at their school and before she got the high band of ehcp she has. As it was an academy they could choose to do this. Her sister goes nearly full time to the mainstream part with the same high ehcp. I’m well aware that this funding effectively covers support that benefits other kids too, but way over and above any actual support the general willingness to adapt to understand our kids is the thing that made the difference. This is something I only found within this academy. The are also very open to not caring about academic standards which reduces anxiety for our dc who is in mainstream so follows some of the curriculum. There’s also other kids in the special unit who have adaptions to bring in their phones, so regardless of Tory pressures being an academy means they can side step some of that. Lea provides transport for ehcp kids here, although I can’t use it due to my kids extreme anxiety, but maybe that could help your dc with anxiety (all the rest of the kids in the special unit use it, just mine are extreme and spent a lot of time fully home educated after a nervous break down age 4 due to the first primary school).

Also- you mentioned meds? I know people get funny about medicating children but having worked along side camhs previously 14 is really not that young to try meds. We have 1 on her adhd meds through camhs but went private for the other to access anti depressants for her anxiety and thankfully our gp is willing to fill them. I have adhd myself so am very much of the opinion that you’d medicate a child with diabetes if the dr advised and that neurodevelopmental disabilities are no less of a disability. I know it can be complicated to get the correct balance of medication with children, especially when it’s not anything that can be measured by tests, but I would say don’t rule it out if camhs would be willing.

Also, if you are currently working just mornings is it worth negotiating with school to have him do part time? Again this is the huge benefit we
found within the academy that other schools, including special schools, weren’t willing to try. I appreciate this doesn’t help if your planning on working more in future, but in the meantime it might reduce his anxiety. While there’s a limit to how much my mostly home educated child can access we have found there’s a huge home schooling network locally and lots of parents are opting for this because of kids anxiety, and the others often because they are highly motivated about child centred education. There’s lots of groups, meet ups and classes here, and as it’s during the day and things are quieter it sometimes means my super sensitive kid can access things like museums, library’s, swimming etc that she wouldn’t have managed at busier times. Many of the kids seem super understanding also, having been learning in mixed groups of abilities and ages there whole life, so are more understanding of my dc anxieties and are patient and accepting. It gives her another peer base, caring older sister type friends, and really supportive input from other parents without the anxiety leaving me to go to school causes. Maybe temporarily this might be worth trying? One thing I’ve noticed is a lot of parents seem to share a certain amount of the childcare in these groups, so that parents can still work around home educating. I appreciate this wouldn’t be something you’d jump into but maybe in a few years of building up connections you might find this type of thing viable. You might find he calms down more with time flexi schooling and therefore manages time at school better, or maybe it might become obvious that her

Shoot sorry- or it might become obvious he needs an alternative school. You also might be able to negotiate with school to prioritise his intervention groups or smaller group work to be in the morning, so he ‘gets’ more of his ehcp funding and isn’t too over stressed for it to benefit him.

Also have you looked at what support your council can supply? We get what has replaced direct payments from our council- an extra £1k per child per year. It goes on private riding lessons for us and equine assisted therapy but I know other families who use it for things like a ‘mentor’ which really is just a baby sitter who will play footy and boost their kid up a bit. I expect how you can get away with this varies area to area, but it might mean you can have an extra day to work, or even just the benefit to your sons confidence.

And your dla- if your son is so anxious out and about you really should get lower mobility rate (anxiety is why my children receive this) so it might be worth getting some help to fill in these forms. I used to do this through work so doing it for my own kids meant I knew they’d get what they are entitled to but I do see so many parents miss out because of this. So might be worth checking.

@VMisaMarshmallow

Sorry I dont have time to read your entire post right now but I just wanted to say that yes my son goes to a flagship academy with an autism unit and please, please, please do not take what you see on open evenings as the truth. The best thing to do is to ask parents of SEND kids and SEND kids themselves.

Right now my son's school will tell prospective new parents that their child will receive support according to their EHCP in classroom but the reality is that the kids are roughly split into two groups: ones who can cope in the class without the support given in their EHCP and the ones who cannot. The ones who cannot are in the unit with 1 HLTA and a TA for some of the day.

I will read all your post later and you may have said you've confirmed with students and parents with SEND issues similar to your children and thats why you're going for it but for my son an academy has only made it all worse because of the strict rules and lack of provision or consideration for SEND issues.

Flexibility isnt something I would associate with the average academy by any means.

I just read the bit about DLA and anxiety, I reapplied for DLA because I was trying to get the higher rate for personal care due to the fact that his needs were so severe that he couldnt stay in school. They kept his middle rate of personal care and took away the lower rate of mobility. I appealed it but to no avail. I get help from the NAS and another charity when it comes to filling in DLA forms.

I'll read it all later.

@JefreeStar, you do know JS's mother was a single parent, right? And his mother claimed welfare? He has a huge amount of respect for single parents.

OP, I'm in a similar situation. I pulled DD out of school for the reasons your son is struggling. She's now homeschooled. She self-studies (allegedly) while I am at work. On an evening I check her work and we do more study together. She's working towards History and triple Science GCSE and an IT qualification to be determined at a later date (I'm thinking maybe CompTiaA+ or MTA in Office)

I've also found a local training academy that has a program for NEAT (Not in Education or Training). She will attend two days a week for the first year and study functional skills level 2 maths and english and level 1 Beauty Therapy. After which she will be eligible to go on to various level 2 courses alongside functional skills level 3 maths and english.

She's much less anxious and more able to cope since leaving school and I am able to work and study full time.

It's hard, it's tiring and often soul destroying but I've already tried the self-employment/WFH people keep suggesting and got massively fucked by the DWP when they decided I was not earning an income and stopped everything during my quietest period. If they'd done it during any other time I could have rode it out on my savings while I appealed but they chose November. They finally re-instated my tax credits the following July and paid back what they owed me for Nov - July along with a whopping £200 by way of an apology . It is not something I ever, ever want to live through again, hence why I now work two jobs. I couldn't work FT when DD was in school. All the appointments and going to collect her early and phone calls from the school to talk her out of toilet cubicle she'd locked herself in made it impossible.

I cant teach him GCSEs! I didnt pass them myself first time

We use GCSE Bitesize and Khan Academy (plus YouTube for History). Anything I don't understand I learn with her. Khan academy is brilliant and starts at the basics and talks you through it step by step.

I am a parent of two send children, both so extreme they were fully diagnosed with asc, pda, adhd and gad by age 5. I have spent numerous hours in the unit due to an anxious child and already knew the governers and teachers well prior to that. You may not find it flexible but I do, which is why I suggested it. 5 years now of very accommodating flexi time table. Perhaps the difference is primary to secondary, I highly doubt my most anxious child will have any hope of accessing traditional high school anyways, or maybe it’s to do with area, but here being an academy makes a significant difference as to how able they are to be flexible and how willing they are to adapt.

You really don’t need to have GCSEs to home educate. Most home education is about facilitated the child developing independent learning skills, there’s numerous online programs for this. There’s also huge networks of home educating parents and most trade favours- so one parent may volunteer to tutor maths while you set up early years activities for the younger kids and so on. Most of the home Ed parents from what I could see where very well educated or skilled in some way, so there were plenty with degrees but just as many who could teach things like gardening or cooking or yoga, so the skills balance out over the network. I’d really love the whole concept but my dc is so highly anxious (even medicated) that we are limited to what she can access.

I used to fill in dla forms as part of my work previous to kids, you need to access better support for this. If his anxiety means he can’t be unsupervised out and about then he’s entitled to lower rate. How these things are worded matter massively, and while it’s so frustrating to reapply and appeal over and over it’s needed unfortunately.

Oh plus naming a special school in his ehcp has nothing to do with if they have spaces or not. If there’s one that everyone involved thinks would be better you name it and when/if a place comes up then you get it depending on where you are on the list. I can’t imagine special schools anywhere have spaces, but the reality is space can become available if kids move, finish school, drop out or transfer to other schools. And if many parents put names down lea should at least see there’s a need even if they don’t address it. We only ended up with the special placement because we badgered the Lea so much for so long.

As far as I remember it was the last Labour govt that made everything "community based". Mental health care in the community, SN kids in mainstream, death at home at all costs. They went too extreme as some will never manage in mainstream or in the community

@VMisaMarshmallow

Oh yes I am talking about secondary academies. I dont think we have any local primary academies. His school do have 1 or 2 primary schools though they do not seem flexible at all. Kids are uniform checked on the gates there.

My son can go out unsupervised. He has a bit of a social life and goes to and from school himself most of the time. This is just interspersed with me having to pick him up some days. For some periods it could be 3 times a week.

We are on a waiting list for one school but they see the chance of him getting a place before year 11 as slim to none. Meanwhile he is started his GCSC course.

Sorry OP, haven’t had time to read the full thread. I have three year old twins with ASD, one has other disabilities too. We’re just going through the EHCP process now and I would never have believed how shocking it is until I experienced it for myself. People have no idea. And anyone who says this isn’t a political issue is being either delusional or ignorant. LAs are billions in deficit, set to nearly triple in the next five years. It’s horrific.

I’ve managed to get them to agree that my twins can both have specialist placements by being belligerent and saying I would be appealing. The plan is still shit, but I’ll be working on that at the six month review - to be honest they probably won’t even be at a specialist school until September.

The school can’t just not deliver what’s in the EHCP - it’s a statutory requirement. The person at the LA is feeding you bullshit.

Try and book a call with IPSEA - you have to stalk the booking page as appointments are added as they become available and book up quickly. Join some of the EHCP groups on Facebook for advice.

Provisions are absolutely shocking right now and it’s only getting worse so now is the time to fight.