Autistic child with school refusal and my own career- is there any chance of managing this?

[UnpredictableJuggle]

Name changed, longtime poster, going for Chat even though this is probably a SEND issue. I feel I am recognisable to friends from this post, but want to get a broad sense of how others on this journey have navigated stuff at this stage. Sorry this is long.

My primary school DC has been diagnosed with autism, is unmasking all over the place and is deeply sad and angry as they are trying to come to terms with the way they see the world and the demands placed upon them. This term they have gradually felt unable to go to school and despite quite a lot of accommodations from the school still feel very wobbly about going more than about half the mornings per week, and totally at random- there's no way at the moment to push for any plan or certainty on the days because if they are overwhelmed, that's it. They stay in their bedroom. Dragging them in kicking and screaming is bad in many ways and while we did that sometimew last year I am never doing that again. Never. It would be very harmful now.

DH and I have juggled this by taking time out of work here and there, missing meetings, generally being a bit shit. DC has had a lot of time on the computer in their room while we WFH. Whole days, then another whole day. They love it, as they are in burnout right now - but it won't help their recovery or wider health to just be left there all day every day.

I am hoping that with some support DC won't fall completely out of school and need a year off/never go back etc. But the support they need is sort of that of a SAHM - totally flexible, always there, managing the need for rest with gentle outings plus getting to school where possible. At the moment a nanny couldn't do that - DC would also look for me in the house and if it didnt go well with the nanny there would be 2 days of meltdown. Also would be so expensive as well as the school.

Until this crisis happened we were a fairly high- earning high-spending family, though not super posh or luxury. We just have massive financial outgoings because we have had all the children in private schools, not paid for by wealth but by our ongoing salaries. Autistic DC themself is in a private school. We can do this as long as we are both in senior executive jobs (150k+ each). Our jobs afford us the autonomy to duck and dive, go to the school, etc, as we are often the senior people in meetings and others work round us. But that's not sustainable; fundamentally you can't do 7-8 hours solid work a day if it's broken up by 4-5 hours of managing children. We are exhausted and working all hours and the other NT children take second place which is awful.

Perhaps in future we can get a good EHCP which pays for autistic DC to go to school if they can't manage a state school but we all know that's hard, and a long road, right?

So my question is - has anyone had an autistic child who burns out/has depression age 7-10 but is able to come back into school almost immediately, with support? And have you managed it without having to give up work IN THE SHORT TO MEDIUM TERM? I can see a world where it becomes clear DC simply can't go to school long term, and I call it, give up my job and we try and manage and maybe another child also has to come out of their school. I just literally don't know what to do now, in two weeks, after the Easter holidays. Do I give in my notice immediately or try and juggle another term? I partly think juggling it might hinder DC's recovery too as we end up feeling rushed and stressed which is the worst thing for them.

Everyone I speak to with wisdom about autism - and there are many - say the following

• don't expect them back in school soon
• you can't hurry their recovery
• life might need to change
• this is a marathon not a sprint

But if we give up our jobs, or one job now, lots of consequences fall from that. So anyone who's been there - do we stick or twist right now? Juggle a bit longer or make a change now?
NB am aware that I'm lucky to have them in private school and it's possible to change to state etc etc -thats our second line option but what I would love advice on now is whether there is any way to do right by DC, a and reduce our stress, without changing everything right now.

Thanks for reading.

One thing I found helpful at that age and stage was working 3 days a week but being very flexible when that would be. It meant a lot of juggling but I was senior enough that people would usually work with my availability. When things with my DC were stable I’d work a bit more to compensate for times when things were more chaotic.That sometimes meant catching up with admin at weekend or evenings when there was another adult around.

If at all possible I’d try not to stop work completely. It’ll be hard to get back in when you’re ready and it’s also very difficult to effectively be a full time carer.

my child was older but I didn’t stop completely. I went part time.

don’t resign now.

you are currently in crisis and that’s not a good time to make decisions.

i went part time which worked for us. I have seen other families hire support workers who worked with the child.

Can you try a nanny, with a specialism or experience in special needs kids, or an experienced SNA? She can keep him busy while he's off school, as being on a computer all day while he's off school isn't ideal.

I agree with pps that you shouldn't give up work yet, it may be hard to find the right time to get back into the workforce once you've left it. Could you and your DH each drop to a 4 day week, just for now? You could take it as half days, in the morning, if that's the problem time for your son.

You should look at how you can cut your outgoings, so you can decide if you could cut your work hours more in the future - what are the state schools like in your area? Could you move to an area with better state achools? Can you move to cut your mortgage payments?

This is really hard, but he's not going to need this level of support forever, so you don't need to do anything hasty.l

I agree with others saying don’t quit your job, you may find it difficult to find an employer in future who will be as flexible. Could you reduce your hours to 30 a week but instead of a whole day off work 5x6 hour days - whichever hours will work best or even split hours eg 8-11 then 2-5 or similar?

is the school supportive and if you handed in your term notice is it a school with waiting lists or could you slot back in fairly easily if things improve?

there seems little point paying full fees if your child is unlikely to go back any time soon - unless you need to keep the space if there is a waiting list, but equally if there is a waiting list another child could utilise the space? It may be your child needs a fresh start somewhere new when they are ready to go back anyway? How old and are they almost transition to secondary/a different school anyway?

I’d probably accept they aren’t going back for the summer term at least and just try and work around it until the summer holidays and then do whatever you normally do in school holidays in terms of work/childcare and see how it is?

Can you try a nanny, and go into the office yourself? So that DC doesn't come looking for you as when you're WFH.

Get a nanny? Keep your job. I see too many fathers of SEN children decide it's 'all too much' and they skip off leaving mum in poverty with no career.

I think that you stick with it, hire the best nanny you can afford and maybe rent an office locally so you can be available quickly if needed?

Meanwhile get the EHCP started (for what you need I'd say you're looking at a minimum of 2-3 years and maybe 2-3 tribunals).

You have money to throw at the problem so throw it. This stuff can and does break up marriages so it's definitely worth thinking laterally.

You need support for you too so think seriously about how to get that. Dealing with all this is v stressful.

Can one of you go part-time or take a sabbatical?

EHCPs would only fund his private school place if that is the only school in the area that can meet his needs, which is a very high bar to meet - I wouldn’t rely on that happening in future.

Depending on your child’s level/type of need they may actually have better support in a state school, it’s worth starting to look at options.

I really wouldn't leave your job or go part time unless you absolutely have to.

At the level you're at, part time probably doesn't exist and you sound like you've got a lot of flexibility.

A nanny is not going to cost more than the lifetime earnings you'd be giving up.

This is not going to be solved quickly.

I agree with the pp though: at least look up your sabbatical policy if there is one (DH too) and open your mind to state schools.

My DC was at a private primary and has settled well into a state secondary with an EHCP.

How are school supporting your son's situation?

I have been there with my autistic daughter, and have taken parental leave to have a few weeks with her. She's never totally stopped going but had multiple periods of time where it has been difficult, but for her, it often stops as quickly as it starts and she's back to being on an even keel again. She's now medicated for anxiety.

It's so hard and really feel for you, I also no longer will physically force her into school. It's been a mixed bag with school - they are good but have reported us to social services (who just offered direction to courses) and attendance officer at the LA but lost our trust and made us pretty scared of them and it has piled on pressure to 'make' her go.

I'd see if you can have some temporary time off before making a final decision.

Whole days, then another whole day. They love it, as they are in burnout right now - but it won't help their recovery or wider health to just be left there all day every day.

Speaking as a parent who has been through the burnout hell with a dc this is exactly what they do need. No demands.

We found as she got older our dd needed more and more support. And at nearly 19 still needs a hell of a lot. Only one parent can work unfortunately. The demands are so high

Also we went from application of EHCP in the April to full issue in the December. We had to go to appeal over refusal to assess but they backed down before it got that far in October. We got out mo involved who is kn the cross party SEND comittee.

If one of you is working from home, you can home educate the child. Don't leave your jobs ...if you want to explore home education join HEFA fb group. Some people do and just learn the options.

Try this before losing the job ( you waste anyway so many hours to and from the school. Most home educators manage with jobs also )

https://www.facebook.com/groups/hefa2021

I have an autistic child, and a similar situation. Our child was able to return to school at approx 75% attendance which is where we are right now. I didn’t think they would be able to at all given how dire things were. They had one month off completely as a reset. All the adrenaline needed to come out of their body. But do you know what made the most difference? And you won’t like this, and I’ll be jumped on for saying it. We removed pretty much all screens, reducing down to 2 hrs max per day, with nothing in the bedroom. Providing attention and other things to do, obviously. Only when home became less stimulating did they wish to engage with us and the outside world again. Sorry, it’s probably not what you want to hear. But it was transformational.

Have a look at the Not Fine In School website and the HEFA facebook page for more tailored advice.

would a part time time table work or an alternative provision or Sen school? It may be a case of finding a better environment? Or hire tutors/nanny to work with your child at home rather than paying school fees.

I don’t have direct experience but am a teacher and have seen some families go through this. Also I have had burnout. I would let them have 6 weeks off. No demands. But as previous poster said I would regulate this. Up at same time (give a lie in) healthy food. A walk. Screen time 2 hours etc. depends a bit on child. I would be happy letting them watch tv depends on programs.

im not sure how mature child is, but I would try to have a respectful and adult conversation. I would then go back two mornings. Now this bit is crucial, don’t up this too quickly. If two mornings goes on longer than you want so be it. Your priority is stability and confidence. Don’t worry about academic achievement. The very last thing you want is dc to totally be out of school.

I would go part time or have some parental leave to support the family over the next three months. Your aim is to let child recover but not embed the staying at home/ make them reconditioned.

Deconditioned

I think you need to be prepared for this to get worse rather than better from the perspective that your child will likely not return to school anytime soon and may refuse to go in more. Your child feels better at home. They find the demands of school overwhelming and uncomfortable . They also get to spend time doing preferred activities. They know you could and indeed have changed things to accommodate this.

You likely either need to get someone to supervise home school or facilitate this yourself. If this can't be done in your role then you will probably need to go part time or give up / change your role.

I agree with thas that whilst your child can access Internet and screens they will be unlikely to return or engage with school.

Get a specialist nanny or nannies or ABA specialist(d) etc try SNAP childcare they work across UK
You could rent a we work type space so you out the house

Resigning from high paid job is not sensible when you can buy in the support and keep your pension contributions etc

This goes against CAMHS advice for anxiety based school avoidance. Punishing a child won't take the issue that is causing them not to be able to attend away.

For older children it is essential you do not remove social networks that are established through gaming , for example, the child will just withdraw further. This is especially the case for children with ASD.

OP good luck, I've been there.

There are people who have managed to secure eotas arrangements which fund education from home so that the parent can work, but this is not something that will happen unless you can show that no school can meet need, and I would not feel confident that this will exist in the future given the current governments approach to vulnerable and autistic people.

I would look at home education and one of you WFH.

It may be not what you want to hear, but it is unlikely that there will be a significant improvement and willingness to go to school.

It isn’t that she won’t go, she physically cannot go. I have just been through the same with my daughter. Mainstream school just doesn’t fit many children; the demands, masking and sensory issues are too much to deal with for a ND child. She is unlikely to get “better” and be able to go back full time. Dr. Naomi Fisher explains this well on her social media pages. Missing the Mark is another good Facebook group.

Only one of us works full time now. Home education doesn’t need to look anything like school, and really shouldn’t for a ND child. Learning can be done in the evenings and weekends, and two hours of formal learning a day is more than enough to cover what they would have learned in a full day at school usually. There are many HE groups around for other activities depending on your child’s interests. We do forest school and craft groups for example.

Right now she needs time to recover and have no demands placed on her.
You have my sympathy OP, it’s really tough.

Can you take the 4 weeks parental leave each and have 8 weeks of solid working with dc and then take it from there?

some dc with autistic burn out recover and some take many years.

However if eight now what’s best for them is being indoors could you also look at online schooling and juggle work around it? Maybe going to 4 days a week each and having separate days off or do FT and each condense it into 3.5 days?

An EHCP is helpful to get specialist school although if you have the finances you could self fund - however there’s no garuntee your dc would manage that too.

idnloom at the cost difference between private school you’re paying for them and putting together your own package of support (inc OT and SALT and online school etc)