To ask what the flippity flip happens when my asd child stops going to school?

[Alwaysyouwhosgottafallover]

Just that really. 8 year old on ASD pathway, always hated going into school has now refused outright three separate times. This is after an hour of begging, threatening, giving options, making allowances, giving space to decompress. I know it's not their fault but I must admit I have blamed them at times.
I cannot be this chill person who just says 'ok, you can't manage it today, well done for trying' when I work full time and let people down. I let my colleagues down, I put myself in a vulnerable position in terms of redundancy and disciplinary. I've just secured funding for an additional qualification and I'm worried that they'll withdrawal it due to my unreliability.
Not to mention I'm a lone parent and the sole person on a hefty mortgage. No real financial support from their dad and he never takes time off as this is impossible ti predict, and I do every drop off.
I am also not financially able to pay for a home education tutor, nanny and whoever else I would need to give her an alternative education, should we secure an EOTAS. The school say that they don't know what they can do after all these years, and are suggesting that maybe she isn't right for the school, which I'm fuming about. She is in lessons about 40% of the time.
Help!

The harsh truth? Unfortunately you will have to re-adjust your expectations somewhat. Having a child with a disability changes your life and you may not be able to continue with your life as you expected it to be.

In many areas EPs are only doing statutory work now and not seeing DC for any other reason.

You need to push through the EHCP- apply yourself, complain when they breach timelines, appeal when they turn you down. IPSEA has model letters you can use. If you can afford it get a private Ed Psych report - from an Ed Psych who does tribunal work (you can find recommendations on local EHCP facebook groups). Once you get an EHCP you may be eligible for a specialist placement, a smaller setting or 1:1 support to enable your daughter to have more accommodations and support at school.
My children have avoided complete school refusal (however we have had periods) but they have 1:1, are met at the gate, avoid assemblies and lunch halls, have movement breaks as needed etc etc. An EHCP is needed but I have had to appeal multiple times to get what's needed. Having said that school have been good and provided help before their plans were approved. I different school who are more supportive might be worth considering?
What do you do in the holidays? Can she cope in childcare? Can you reduce your hours/ flexi time at all if it came to it?

This is absolutely not what any EP would wish to do, and in any authority where this is happening it is a sign of services cut to the bone.

Have you looked at the unschooling network? It’s really hard when you work full time, I agree :( is there a way you can reduce or do flexible hours including from home?

Also is there something that will help her enjoy school more or an alternative type of school?

Honestly join all these Facebook groups. There is so much support and specific advice on there. I’m so sorry you and your child are going through this.

@TorviShieldMaiden

That was over a year ago now. Lasted for a few weeks and a year on DD still loves going. She gets annoyed in the school holiday that she can’t go as she likes the structure and routine she normally has. She chooses to go to 2 after school clubs and just loves going. But the school are fantastic with her. If she’s having a rough day they take her out for a wander round the field or let her pop into nurture. She spent ages having lunch in nurture until she chose to go to the lunch hall. She wears ear defenders whenever she wants them and they are just generally great at supporting her. She’s come really far in a year and I’m glad that we stuck with it as for her it was the right decision. Not all autistic children are the same. DD has always loved going, until lockdown and then she developed separation anxiety which we had to work through. I’ve spent 10 years working with SEN students and have a masters in SEN, I knew it was the right decision for her at that school. I wouldn’t have done the same in the school she went to before.

Again not what you want to hear but I literally had no option but to come out of work to meet my child's needs. I'm still mortified and ashamed by it Id never claimed benefits in my life I absolutely loved my job and it was an integral part of who I was but I wasn't reliable anymore and had to stop. It's been 3 years and I still feel trapped but I have to do what's best for my child for now and hope that my time will come round again. My little girls needs are severe she will never live independently. Sorry op I hope you find a way

Hi OP, this sounds really stressful.

Ipsea are great. Get on their website and follow all the steps to get an EHCPNA/chase up the EHCPNA if it has started (LA has 6 weeks and as you haven't heard anything that could mean it hasn't actually been requested. You can book a call with them for advice too if you're patient.

We were also told DC wouldn't get one but the tribunal disagreed. It took 6 months from applying originally to getting the tribunal decision. At least 1 year to get the plan. Maybe 18 months if 2nd tribunal needed.

I also think the advice to change school is good. At this rate you're DD is going to end up too traumatised to go anyway.

Look at different schools even if you think the current one is doing as much as anyone can do. Schools vary wildly and often it is not related to how academic or highly rated with Ofsted a school is.

I expect you're doing this already but have some serious discussions with work about how you can adjust your hours and /or work more flexibly. If it's a half decent employer they will go some way to support you, and you have a lot more good will if you are pro-active and let them know what is not possible. Mine would much rather I commit to 20 hours a week and deliver it reliably, than commit to 40 and only manage 30. Similarly they'd rather have me signed off for a certain number of weeks, and then back, than flakily limping through turning up some days and not others. Of course it's more complicated because you have the mortgage to pay, but ultimately you may have to cope with not being physically able to work the hours you feel you financially need to. It's scary and horrible and all too common.

An EHCP and specialist setting have been life changing for our child and for the whole family. It can be done. It's a prize worth chasing, hard, even though you know they are gold dust. But you also need to deal with the day to day reality while chasing whatever long term fix you feel will be right for your child.

We went into this thinking a professional would come along and tell us what would be best for our child, but they never did. We needed to own it, do a tonne of research, make our own minds up and then advocate for it. It's really hard, even more so for a single working parent. But for us it was that or give up on the system and home ed, which wouldn't have suited any of us.

I hate saying this but if a school doesn’t want to help, you’re going to get nowhere.
It shouldn’t be like this, but you don’t have the resources to fight that. Look for another school.

The difference between primary and secondary has been night and day for my ds. He’s a valued member of an inclusive school community and not an inconvenience.

We still have some issues around school refusal. I’m not pretending it’s plain sailing now because it certainly isn’t. But the school work with me, instead of against me. And that is everything.

Right now for you it's getting that EHCP in place. You do not need the school to do this. You can apply directly then you have the right to appeal. Sadly the school do not and the process shuts down for six months if they are refused.

Then you can look at alternatives. We had EOTAS and I had a personal budget plus alternative provision. The LA will hold a list of approved providers. It can take a while to get in but once in it's easy to increase days.
Specialist provision is also a very good option that's often run alongside alternative provision.

Then in year 6, transition from junior to senior, this may be a paper exercise but it's an important time. You can request extra assessments and get the EHCP changed to reflect needs going forwards.

Then working towards adulthood. This starts at about 14. Planning for the big transition from 'senior' school age into adulthood and further education.

This may take the form of supported placements, supported college, therapeutic placements. This can continue until they are 25.

Please know that you can request a social care assessment from the Social workers that work for the LA. A useful document to have to help with identifying need. And getting the needs met through EHCP.

You can also request a carers assessment for you.

It does unfold. You'll need a help to get this right but it's a long process so don't worry about doing all immediately.

I had IPSEA to help me, they are a charitable organisation that help guide you in law.

And I used SENDIASS to help navigate tricky bits with key stages. They are also a free service funded by the LA.

In parallel to the process are the non means tested benefits you need to claim; DLA. You'll need this just to even up the extra expenses of having an autistic child.

Blue badge via the council when you have your DLA

Then when they approach 16, PIP.

Once they are 19, you need to ask for a work capability assessment even if they are at college. This is purely so they can get their NI stamp but it will give access to UC at some point. It's quite expensive otherwise.

And, sorry I know this is long, if you have any other over 18 living with you you can apply once the child themselves reach 18, with the council, to be classed as their carer for council tax purposes . You can't before this time. This gives you the 25% discount. But you'll be getting it anyway if you are the only adult and they are still in education.

I am part of the group 'trauma informed parents' this helps me understand how the trauma caused by autism affects behaviour.

It might be it's as simple as an EHCP and adaptive measures with the current school. But from reading It sounds like the stress response your daughter is showing isn't conducive to learning and she needs a different path now.

You'll get through this. I know it's a hard time. My daughter is an adult now. She says to me 'mummy, I need fierce mummy today to sort things out'. I didn't take no for an answer. They see you are fighting for them although at the time it appears to be a thankless task.

Lots to think about.

If you get knocked back on ehcp appeal it. You need a meeting with teacher and senco to discuss strategies for managing child. Do they need more sensory breaks? Is there a 1:1? It absolutely is schools fault if they are failing you child. If they can not meet need you need to look for another mainstream school or a Sen provision. You will need ehcp for Sen provision. Or you can home school but yes unless you have a full time support system it would require giving up work.

I have enormous sympathy for you, but who else were you expecting to be available to help? I'd imagine that the teacher was with their class.

@inloveandmarried I found your post really informative.

I think that, sometimes, the impact of less than adequate provision on families is seriously underestimated. We have two sons: one diagnosed (ASD) and one not. Both struggled at school

My eldest has a statement of educational needs, later transferred to an EHCP and 1:1 support in class with more discrete support in break times. Many, many times my husband (who was the primary carer whilst I worked) was called to collect him from school, especially during the secondary year. We did not really recognise this as a sign that the support and placement just was not working.

My youngest, coasted in the bottom sets with extra support for numeracy and literacy and his 'difficulties' were attributed by professionals and, therefore by us, to the environment (our eldest exhibited behaviour that challenged very frequently). In retrospect, he masked heavily.

By the time they were 13 and 14 respectively, both boys were not attending school on medical grounds (extreme anxiety/depression and anxiety) and they were under CAMHS.

My eldest went into a CAMHS unit, where whatever education he could access was provided (he never sat his GCSEs or equivalents). He was transferred to a specialist school for Y11, but the placement was not successful due to his very fragile and escalating mental health issues. His behaviour was considered too much of a risk even for a specialised environment.

My youngest was allocated a home tutor by the LA, for five hours a week, focusing on maths and English. He hid from the tutor most of the time, and accessed very little formal education. Trying to educate a teen who was in the grip of a serious anxiety disorder, and whose world had been turned upside down, was virtually impossible for me and for any tutor.

I had taken long term sick leave from work by this time, because my husband clearly was not coping. In the end, I was fortunate enough to be able to work from home, but this is not possible for everyone.

I would like to say there is a happy ending to this, and that my sons (now in their early twenties) recovered and caught up with their education etc. Yet, that has not happened yet. Part of the reason that it has not happened is because the combination of long term unmet needs, a sense of 'failure' at school and later at college (neither son made it through the first term) has left my sons with seriously avoidant behaviour. I am sure that, over time, and with gentle support, they will each thrive in adult and community education.

Therefore, I would reiterate what many posters have said: there needs to be meetings with the school, applications for statutory assessment, in addition, explore the SEN Forums here and on the NAS website for advice about getting more adequate provision for your daughter. At eight years old, there is a real likelihood that provision can be found that will help your daughter thrive without you having to give up work.

Good luck !

At age 8 you have time to get this right for your DD. Unfortunately, you may find that your work life suffers.

I would recommend submitting a Subject Acces Request to the school. That will give you access to all communication and records that the school have had about your DD. Internal emails where they discuss her progress, etc. I would then use that information to request the EHC Needs Assessment.

When submitting the request, if your DD has any speech and language difficulties, ask for a SALT to assess as part of the EHCNA. Also, a sensory OT assessment. In many areas NHS waiting lists are huge - the LA are obliged to commission the assessment if you can show it's 'reasonable' and if they can't get that done through the NHS, they need to commission it privately. Similarly, OT in the NHS often doesn't cover sensory assessments. The LA would be obliged to commission this privately.

In the meantime, don't discipline your child, as others are suggesting. She is in crisis.

If I had realised how bad things were for DD2 every time she school refused, I would have been able to secure provision for her earlier. In the end she completely stopped attending in year 10 and now attends an independent specialist school through her EHCP.

I used to be a nurse but had to give up work, by the way. I now spend 5 hours per day driving my children to their specialist placements.

It is a long way off for the OP, but young people (or their appointee) can apply for UC before 19. To establish LCW/LCWRA prior to the start of the course a credits only New Style ESA claim can be requested. Contact have helpful information on it on their website and leaflet.

You can apply for a blue badge without already being in receipt of DLA.

WTF

Welcome to my world OP!! My 11 year old dd with ASD and pda loathes having to get up for school, we have a full on hour of screaming, crying, shouting with my negotiating with her, cajoling her etc. Eventually I get her in but we are usually an hour late. I went through a phase of letting her stay off if she was too distressed as luckily I can work from home but this isn't what I want for her. Like you I'm a single parent and life can be isolating. I also have to work to pay the rent, bills etc plus I enjoy working so don't want to give it up. My amazing understanding boss has just left though and we have a new one starting in a few months. Dreading it to be honest as I'm late for work most days. Solidarity to you 💐

@OhcantthInkofaname your post is ableist and I have reported your post. Would you suggest the parent of a wheelchair using child encourage them to walk by removing the wheelchair and just being stricter?