How much longer do we keep trying?

[MoonSunStar]

So, DC crashed out of school last December. We won our appeal for an independent SS last spring but DC (now Y10) still hasn't been able to attend due to burnout and trauma. The school's SENCo dialed back their expectations and set up a weekly 1-hour transition session with DC, which DC managed to do twice. A few weeks later, they went to one lesson. That's everything this whole half-term.

At home, they are doing a lot of self-led learning: some Maths, lots of art, graphic design, reading, piano. They say they want to go to school but just aren't ready. School isn't pressuring, which is good because DC has a PDA profile and pressure wouldn't help, plus we've seen that giving them time and space has been the best thing for them.

The school is lovely and supportive (though maybe they could be doing more) and I think DC could get so much out of it if they were able to attend. But I honestly don't know how long we can go on like this before we have to say the school can't meet needs. The only option left would be EOTIS, and I'm dreading that battle. Any suggestions would be appreciated.

Is DS receiving any therapeutic input?

Would DS be open to meeting school staff off-site? Either at home or in the community. Can he interact with them online? All still self-led.

I would push the school to be doing the ‘more’ you think they could perhaps do.

@flawlessflipper Apologies for the delay replying.

DC is not able to engage in anything right now and says they will never be able to go back to a school. They refuse any therapeutic support. We've offered counselling, OT, CBT, art therapy, MindJam. School has offered onsite meetings and video check-ins. I've asked them to set up a meeting for DC with the school counsellor but am waiting to hear back (they said they have a waiting list).

DC was starting to recover from burnout a few months ago, but it now feels like they're back where they were this time last year. I think they're feeling very pressured by the knowledge that they have the place at the independent SS. They feel like they're letting us down after everything it took to get the place.

I'm at the point where I'm ready to give up the school place as it doesn't feel worth the impact on DC's mental health. Maybe it's just better to give DC more time to recover without that pressure and, in the meantime, I can look at different options and put ideas together for an EOTIS package and start that battle, I guess.

I never imagined my bright, highly academic child would end up not being able to do GCSEs and follow the ordinary school route, but that's where we are. 😢

You have mentioned the school offering on-site and online meetings, but not off-site F2F input. Do you think DC could work towards that? Although DC may not be able to engage with anything representing school right now.

I know what you meant but when talking to the school and I, don’t say DC refuses therapeutic support. Use unable to engage. Sometimes schools and LAs will latch onto the word refuses and see it as an active choice. I know you don’t think that, but some other people will. Some then use this to remove provision. Support needs to be amended/provided so DC gets to a point where they can engage.

If DC can’t attend, I wouldn’t give up the school place in as far as deregister to EHE. That doesn’t mean DC ever has to attend again, but I wouldn’t EHE. If you EHE, the LA has no incentive to provide support.

An independent SS place with transport is eyewateringly expensive. I would expect the LA to jump at the opportunity to fund EOTIS if you could present them with a program that your child will engage with that is cheaper than SS. I would start with what your child likes and wants to do, maybe GCSEs in maths, English, music and art and maybe some piano lessons - online or with a tutor or combination thereof. That would still open the door to A levels or FE. GCSEs can be done at any age out of schools, so they could repeat year 10 if needed - that might also take the pressure off. Counselling etc can be done online, or even by text, if that's easier to engage with than face to face. I think a SS is as bad, if not worse, for an ASD person with PDA. If the need is not for more learning support, but for more autonomy and 'calm', then most SS wouldn't offer that. I don't know which school you have chosen, but I doubt it is free of sensory challenges, has open doors, allows pupils to come and go as they like, has no behaviour system, has no uniform policy, has teachers on first names and is full of self-regulated, calm, quiet, happy pupils who can freely choose their subjects.

A proper EOTAS/EOTIS package is every bit as expensive as an independent SS. Done properly, it isn’t the cheap option many think it is. LAs also dislike EOTAS/EOTIS, in part because they perceive they have less control. There is a reason the majority have to appeal for EOTAS/EOTIS, especially for a proper package, even if their DC is in an independent SS with transport.

@flawlessflipper When I discuss the situation with school, I do talk about DC not being able to engage rather than 'refusing' to. That was just my frustration coming out in my original post. School hasn't offered F2F off-site but DC says they wouldn't want that. We wouldn't deregister/EHE; we'd look to move to an EOTIS package.

@NellyBarney My DS also started at the school recently and the setting seems very nurturing and attuned. Classes are a max of 8 (but usually 6 or 7); kids can take movement breaks with a TA whenever needed. There's no uniform, no homework, they're flexible with adjustments to timetables (DS starts late and leaves early several days a week to avoid lessons he finds stressful/triggering); staff are known by first names; there are therapy dogs that come in regularly and lots of other therapeutic provisions (forest school, equine therapy, etc). It's a pretty calm space although DS says there are a few "screechy" girls in some years, which both children find hard to be around. All students work towards GCSEs (maximum 8 but most take fewer). It's a 10-min drive away so we do our own transport. It's really our best hope for a physical school for both of our children but DC1 simply can't engage with any in-person or remote provision ATM due to their burnout and anxiety, and they have been super stressed out over the past few months just knowing that the place is there waiting for them and they can't access it.

This sounds like an amazing school. Maybe the anxiety has just built up and a 'push into the deep end' is all that is needed. Our psychiatrist from CAMSH told us that there is a difference between ASD and anxiety. ASD needs to be accommodated, there are some things that deplete and hurt children and they need to be taken away/adjusted in order for kids to function. But they said that anxiety just feeds on accomodations and avoidance and reasurance. If it is 'just' anxiety, so a fear of something they objectively could do well with their specific ASD/SEND but feel they can't, CAMSH has prescribed response prevention therapy. It's basically a therapist talking to my children about their feelings while we must not allow them to avoid things, must not give them any reasurance (as this feeds the anxiety as they make the conclusion that if you reassure them there is something you need in order to cope and you are not strong enough to cope) but remind them they absolutely can do it on their own, especially if they remember the therapists advice (talk back to voice in your head telling you it's scary, see anxiety as a bully who lies to you to hurt you and call them out). In the case of my children it's things like going on school trips, vacations to unknown places, not giving exclusively 'safe' foods, making them attend group activities, taking them to 'dirty' places. The more we do it, the less the fear gets. We let them avoid a lot of things after their burn out, and instead of them natualyy getting better, thry got much worse - the overall fear and avoidence grew until CAMSH made us change approach. It was right what we did at first - change their school setting and taking away things they genuinely couldn't cope with, but once we had confidence that their new setting definitely wasn't overwhelming for their ASD, but saw how their condition deterroriated and their anxiety and avoidance grew beyond all boundaries, we got desperate and finally got to see a CAMSH team who helped us so much. It felt cruel in the beginning, like old fashioned tough love (we had to basically ignore them, give them consequences for avoiding behaviour, like take their money and devices away, and do the 'we expect you to come with us and won't take no for an answer' with a 'we mean it' stare - luckily my husband can come across as 'don't mess with me', as my children wouldn't listen to me on my own). I can only recommend to see a psychuatrist for anxiety disorder. School avoidance often us also a form of OCD - the fear of school is the intrusive thought and the avoudance is the compulsive behaviour. In that case especially, response prevention therapy can help, if their fear is genuinelly irrational and the thing they are afraid of is genuinely adequate and good for them, if that makes sense.