To think that if "school is not childcare" then HMRC and the DWP have missed the memory?

[CatONineTails]

I'm a lone parent with a 7yo who has as yet undiagnosed SN (presumed ASD and possible ADHD). I have worked since he was small, running my own business as a sole trader which is pretty successful and earns me a modest living which is topped up by WTC and Housing Benefit.

DS has always struggled at school but since moving up to the junior school this year things have got worse and worse. We reached a point recently where he was having daily meltdowns, often with accompanying aggressive or violent lashing out at staff and other children, and he has now been put on a pastoral support plan with a 50% reduced timetable until the school can get full EHCP in place with funding for a 1-1 etc.

So my earnings have plummeted because I'm now only able to work 2.5 hours a day (that's on a good day - at least once a week there's a meeting I need to attend about DS that takes up most of the time he's in school). DS can't go to any sort of childcare, there is none that meets his needs locally. I have no family support local enough to help. No friends that feel able to look after him. School breakfast club won't take him so I can't even start work early.

So off I trot to the local one stop shop where they do benefits advice etc. But I'm not entitled to fuck all extra, and in fact if I don't carry on working 16 hours a week I may lose my WTC. I've applied for DLA and carers allowance but with no diagnosis it's not a given that I'll get it and so far have heard nothing back. I usually work extra hours in the run up to the summer holidays so I can reduce my hours while DS is off school but that's not going to happen this year. I honestly don't know how we will manage.

I wept in the SENCOs office today at a meeting and explained the financial pressure that I'm now under, only to be told by someone from the local authority that "school isn't childcare" and that DS needs must come first. Well as it happens DS needs a fucking roof over his head which means I have to work to pay for it! Of course in an ideal world I'd be at home ready and able to drop everything to meet his every need but I'm not, I can't be, there's only one of me and Im really struggling with getting so little break from DS plus trying to work the necessary hours so I don't lose all my clients and my tax credits to boot.

Some one really should tell HMRC and the rest that "school isn't childcare" so they stop insisting that all parents with a school aged child are free to work within school hours If the DLA application is turned down then I will be expected to work and earn as though there is no difference in my circumstances despite the fact that it is literally not possible for me anymore. I know IAprobablyBU but the utter inflexibility is so frustrating.

Does your HB cover your rent? Because if not, talk to the council as they may be able to help with additional funding for a period until the situation is resolved.

Has the school applied for higher needs funding?
That means they access that for a 1:1 TA before you even have to get the EHCP. Instead of going to a 50% timetable, the sendco should have filled or the form started and got higher needs funding squared away.

@Goldmandra they've put toilet trips on DS visual timetable and are basically bribing him with 10 minutes ipad time if he goes. So far he has refused consistently though. He does the same with all toilets except the one at home. Tbh I got the feeling she was just agreeing with the SENCO about everything. Kind of like they'd already had the meeting without me?

I feel like I've had very little support tbh. The GP is nice but no practical use. Everyone keeps agreeing it must be very hard for me but nobody does anything helpful!

I see no reason why your dla will be rejected, and if he gets medium rate or higher you will no longer be required to seek work as you can then apply for Carer's allowance.

Batten down the hatches chick. You're in for a long fight with the school wrt his needs - they should have someone employed and an ehcp sorted out by now, but keep applying for dla if you get rejected. he sounds very high needs and they should recognise that.

One point resonates with me as a mum with DCs, one with ADHD and I fully understand this "there's only one of me".

It's really hard seeing the child you love, who can have 'normal' periods go through periods of anger. When it's just you dealing with it, it's even harder.

My DS is going through a particularly hard patch at the moment. His dad, my ex, won't help with his development meetings with consultants, school visits, medication. It's all on me.

My DS is better with medication (ritalin). It scared me to start with, but he is able to get through a day with it. He often leaves school feeling raging anger, but at least I just get the issues at home and he can focus more in school. I worry about the future, but then think he may get better as he gets older.

It's tough, keep your chin up and on bad days just get through it without setting too many goals!

Post on the special needs boards. As pp have said, DC is entitled to a full time education, as he is over 5. As well as applying yourself for an EHC plan, I’d ask the school to apply to the LA for emergency funding for support for DC to have a full time education; I’d put in a request to Social Services for an assessment of need for DC under The Children’s Act, and a carer’s assessment for you, and I’d write to the Chief Executive of the LA, spelling out your circumstances as you have posted here, saying if you lose your home, it will be due to maladministration by the LA with regard to its failures in meeting DC’s needs.

SOS!SEN also run a helpline giving advice on SEN matters like this.

Apply for DLA for DC, because if you get that, he can get legal aid for solicitors in community care law to act for him for free, with you as his friend in litigation - to get proper support from social services for him and you (as his carer). Firms in this field, who will act on legal aid, are for instance Simpson Millar, or Irwin Mitchell.

You are entitled to a little cry in the SENCOs office and the person from the LA's attitude wasn't helpful. School isn't childcare but it shows all the way through your post that you aren't expecting it to be, you are just frustrated and struggling because the system sucks. I'm a 1:1 and I have noticed a lot of specialists forget that most parents actually are doing their best.

It sounds like you have all the evidence you need for DLA. Once that and the EHCP are in place things will start getting easier. In the meantime, Is there anyone that can help you financially short term? What are the holiday club provisions like in your area? There are some about that have provisions for children with autism, some of which are either community interest charities (so will subsidise costs) or receive various funding, which would at least give you some time to work over the summer. Are Early help involved?

So he has been managing school for two years without using the toilet?

My DD2 managed to get to Year 8 without ever using the toilet in school. Do you believe that needing the toilet is the cause of his distress? Why now? Why not a year ago?

Get the IPSEA template letter send it to the LA ASAP. The assessment process should get OT, S&LT, etc oberving and assessing him. The OT may be able to make some more appropriate suggestions about the toilet.

Remember, you are the expert in your child so expect them to listen to your advice about what support in school could help him.

Start sending an email to confirm each conversation in writing the same day and make sure it includes what the person you spoke to has agreed to do.

If not being able to use the toilet is stopping your DS being in school, it is a barrier to his learning and the school should be working hard to find ways to overcome it. If the current strategy of offering a reward isn’t working, they need to get more advice and try a different approach. Carrying on with the same unsuccessful strategy and using its lack of success to justify an unofficial and prolonged part time exclusion is not acceptable.

OP, I really feel for you. My DS was fortunately diagnosed very early, he is now the same age as your DS. I also became a lone parent when he was 2.5. I appreciate and understand the massive impact this has on your life. I have been unable to work since he was tiny and there is no realistic prospect for the foreseeable. You should not need a diagnosis for DLA, you should be able to get that in the meantime, as others have said this will give you an increase in any HB and indeed tax credits. With the award, you can claim carer's allowance and enhanced income support. I realise this takes time though. Please get yourself over to the SN boards here, there will be lots of better advice. I wish I could offer a more practical solution to your current situation, I know how hard this is

if the toilet is being mentioned as a big issue, are you close enough that you could pop in at lunch, take him home to use the loo and go back? I know its not ideal but it might take a bit of pressure off at least

Unfortunately school is 5 miles away. We're quite rural and although there is one closer school, it's completely unsuitable for DS (30 pupil village primary with 2 staff members and a reputation for managing out children with SN as they don't have the resources to cope with them). So it's a drive each way and not really practical for me to go in at lunchtime especially if i am working as I could be miles away.

Thank you all so much for the advice. I will get over to the SN topic and post there later. I have just been assuming the school are doing the right things as it all sounds so reasonable when they say it to me, but thinking about it am starting to wonder... I just worry that I'll be a massive burden to the posters in SN! I don't have any useful advice to offer anyone as I don't know what the hell I'm doing

@colditz the thing with DS since babyhood has always been that he is a lovely sunny clever chatty delight... but only if you work incredibly hard to make sure everything is just right for him. I did always think he was a high needs baby but because it is possible to keep everything just about ok for him now he is older, I don't tend to think of him as high needs now. But yes, yes he is very very hard to care for a lot of the time and although I can manage (just) it's definitely extremely difficult. I've only very recently started to realise how much I'm doing that most parents don't need to do. DS really struggles socially with other children so we hardly see anyone tbh and I'm rapidly losing my frame of reference for what's 'normal'.

Sorry regarding the school - he coped much better in the infants school and although he did still struggle it was a smaller calmer school and his issues and differences from his peers were less apparent at that stage. There have been issues with the handover from infant to junior school (I say issues, I mean that no paperwork at all has ever materialised from the infants school so juniors have had to start from scratch which is why nothing is in place yet). Although ASD has been suspected for some time it's only since the start of Y3 that it's become so obvious and DS has just lost the ability to cope with school.

So at infants they kept telling me lots of kids won't use school toilets and brushing off my concerns that it might be making his concentration and stress worse when he was desperate for a wee. That sort of thing.

Is there no possibility of any financial support from your son's other parent? I fluctuate between being angry and sad for the lone parents who have to struggle with everything relating to their child/ren.

PS I have no intention of ever giving up my work! Never. DS will.hopefully grow up and leave home one day and I will need to be able to support myself without benefits then. I'll keep my business running if it bloody kills me. It's like my second child, I worked so hard to build it from nothing and I need it for the future. I realise this probably makes me sound really selfish and hard nosed but it's an absolute no debate area for me.

Is his dad around? If so he should be doing his fair share, if not practically then sure he should share some of the financial losses. It shouldn't always have to fall on the mum. Sounds really tough so hope you get some help very soon.

I taught in Year 3 for many years and it is very common for children with SN to struggle with the transition from infants to juniors. NT children find this difficult too but it's much harder for a child with SN.

The jump in the curriculum is large and there's so much more expected of them. Most schools put a lot of TA and LSA support into Year 2 as it's a SATs year but nothing into Year 3 (it's a long time until Year 6 SATs). So things that could be managed by a good team in Year 2 can't be managed by often just the class teacher in Year 3.

I really think you should ask for another meeting and get a deadline for the part time timetable to end. Even if he remains part time in class for the short term, the school should have someone supporting him elsewhere on site for the rest of the time. I've had children in my class who have had this and then we have gradually increased their time in class until they are back full time. It sounds to me like the SENCO isn't really supporting your DS's teacher or him.

Yep, mine too went from being "fine" in infants to not coping in juniors. I would start looking at alternative provision - different schools vary widely in their ability to support children with this sort of issue. Whilst an EHCP should bring increased support it will not guarantee a change of attitude and expertise in your child's SEN which is what is probably lacking here. Do not dismiss changing school. Some mainstream schools cope much better than others with children with an ASC and/or ADHD (if you have a local support group for parents of children with an ASC they can be a valuable source of information about how good different schools are. For ds1 the solution was a primary EBD school which filled us with horror at first but who were actually brilliant with him both academically and behaviourally.

Right now a different school is out of the question. There isnt another school for 10 miles for a start! I can't afford to do 40 miles a day for the school run. I can hardly afford to keep the car on the road as it is.

As for DS other parent.... he has medical conditions that mean he is unable to work more than a very token amount or drive at all.

He's technically and to some degree emotionally supportive but tbh I need either money, or another driver that can do school runs. One of those things would improve my situation a lot. He can't provide either.

OP no practical advice but a shed load of sympathy for you being in this fucking shit situation.
Please do email your MP, see if you can make an appointment on a surgery date too and set this all out for her or him. MP’s support often helps a lot with making other organisations take notice or expedite their processes where they can. Wishing you all the best.

The fact is the school would be well within their rights to permanently exclude your child, SEN regardless, and then he would have to go to another school. It actually helped us to know what would happen if the axe fell (which it did) and have a back-up plan. If a special school or ARP is named on an EHCP then the local authority should provide transport rather than you having to take him (ds1 gets transported 40 miles currently). The other alternative is home educating which IF it makes him less stressed might be better than the part-time current arrangement.

I know the school sound totally reasonable and like they know what they're doing but the truth is, you're working at cross purposes. THEY want the best school experience for EVERYONE. YOU need the best school experience for YOUR CHILD.

They will be quite happy with sacrificing your child's education for the sake of the 29 others in his class and his teacher. YOU have to be perfectly happy with making their lives hell until they meet their legal obligations to your son.

RE the toilet and it starting with his transition into an older class, I wonder if the teacher has said something black and white like "Nobody is going to the toilet in lesson time, you should remember to go in your breaks" and he has taken it to heart and is now scared to go in case it's the wrong time? Or maybe another child was horrible to him in the toilets? Or maybe they smell?

Have you had a letter to say the EHCP is in? You could do a parent application in parallel just to cover all bases and feel in control.

In my area DS1 gets transport to school because he meets our local criteria and and not practical for me to transport to named school on EHCP.

School inclusions team may be able to advise alternative schools and what the transport criteria would be.

It's really tough at this stage when everything is up in the air. Dig deep, keep finding the energy, keep going and then slowly (and it is unbelievably painfully slow) things will start to happen and each little win makes life a bit better until one day you'll wake up and your new normal will be okay.

Regarding practical support some areas have a special nurse for toilet help. Lots of our local ASD children have support. Our local NAS also did a very good practical session on helping with these issues. A common problem appears to be bowl problems and constipation which causes urinating signal issues. Just another thing to throw into your overflowing pot of advice for consideration.

Have you had speech and language support yet? They're support has been some of the best practical support I've received. School should be able to refer you. I went not because mine couldn't talk but because their social skills are lacking. For DS1 things like issues with using the school toilets have been storyboarded.

This is awful for you. Phone SENDIASS for advice. They are independent from any LA and give SEN independent advice.

Rockandrollwithit has some good advice too. The part timetable should only be a temporary arrangement. SENDIASS will be able to advise you about this. It is important to keep on good terms with the school but you also need to be able to keep worki g, especially as a single parent. You have achieved that business through hard work a d tenacity in difficult circumstances. It is people like you who should be given help and support. You sound fab. I really hope this situation resolves soon.

If the needs assessment application from the school doesn't happen soon, put in a parental request for a needs assessment. You are clearly very good at getting evidence together. Good luck.

This is really hard for the OP, but I struggle when people start talking about 'strategies and support the school has to put in place' to make a child who point blank refuses the toilet use the toilet. They are trying encouragement and bribery. What would others suggest? There are no magic bullets.