Aibu to keep my daughter off school?

Sounds almost identical to my DC, who is autistic. I was misdiagnosed with Tourette’s as a child and I’m autistic too (turns out the “tics” were actually stimming). I’d advise reading up on how autism presents in girls in particular, and definitely request a meeting with the school senco. IME it’s another case of the parent who shouts the loudest getting the help, unfortunately. Do apply for DLA as well as you don’t need a diagnosis for this (the charity Contact have a useful guide to the process). It’s possible to get an EHCP without spending any money on reports - I managed this when I applied as a parent because school refused (be prepared to appeal though). Good luck.

I didn’t say your point wasn’t valid . I was merely pointing out EHCPs are based on needs, not diagnosis. Therefore OP does not need to wait for a diagnosis.

Agreed. But my point is also valid.

Personally, I'd apply for both. Because she has a child who is being massively let down by the education system.

My point was OP doesn’t need to wait for a diagnosis before pursuing an EHCP because they aren’t based on diagnosis.

Yes. But a diagnosis underlines the need.

EHCPs are based on needs, not diagnosis.

You could also speak to an organisation like Tourettes Action. I'm sure they would have lots of really good advice.

Definitely get her assessed. It sounds like the schools are not meeting her needs. If she's likely to have it, a diagnosis will at least give you fuel to get an ehcp, and mean that the school has to make reasonable adjustments to help her cope, because they're clearly not doing that now. :(

OP, has your child been assessed for tourettes?

I really recommend you pay for this webinar from Empowering Families: https://empowering-families-events.thinkific.com/courses/education-health-and-care-needs-assessments-prerecorded
I think it's £10 and it will give you a really good introduction to the whole process, plus a load of template letters etc.
I don't work for them - promise! But I've used their stuff and it's great.

I really recommend you pay for this webinar from Empowering Families: https://empowering-families-events.thinkific.com/courses/education-health-and-care-needs-assessments-prerecorded
I think it's £10 and it will give you a really good introduction to the whole process, plus a load of template letters etc.
I don't work for them - promise! But I've used their stuff and it's great.

You can request an EHCNA and s19 provision from the LA. On their website, IPSEA has model letters you can use for both.

The symptoms being displayed could be triggered by causes such as infection and mould for example.Also many PANS PANDAS children are ND. Please do look into all aspects of this thoroughly. Other families are an excellent resource for info as they have already learnt that unfortunately schools, local authorities, CAMHS, NHS are not necessarily at all.

Definitely request an EHCNA and in the meantime, section 19 provision.

Even if parents can’t afford independent assessments, it is still worth pursuing an appeal. If you have to appeal, need independent assessments but can’t afford them and aren’t eligible for legal aid (which can fund assessments) there are charities who can help such as Parents in Need.

If DD can’t attend school full time, you can request an expedited hearing if you have to appeal to SENDIST.

Everything in writing with the school going forward.

After every meeting or any issues, you email them to clarify what happened. "Please can I just check my understanding of what we agreed at today's meeting. You said that you would put x, y and z into place within the next two weeks. I assume that I've understood it correctly, if I don't hear back from you by Wednesday. Thank you so much for taking the time out of what I imagine is a very busy time of year for you. "

Or, something like "I'm sorry that Sophie was so disregulated again this morning. Let's hope it doesn't take her an hour to get her in to school tomorrow like it did today! Thank you for your help with this". You're evidencing in writing what happened.

You will be fed all sorts of BS lines such as 'Sophie isn't two years behind in her learning so can't have an EHCP.'

Or

'We need to monitor her progress for a term before we can apply'.

Find a local charity that can support you through this..Other local parents will be able to offer you the best advice.

To win at Tribunal, you will need to have your own private reports because the LA/NHS ones won't be worth the paper they're written on, I'm afraid. They usually play down needs.

The top priority would be to get Ed Psych report. Usually £1000-£1500. Most Ed Psychs have a waiting list of about a year.

After that, an OT is a good bet or perhaps a SALT report. Or a private advisory teacher. They're around about £350-£800 each.

The EHCP has 3 steps to it.

(1) You apply for a needs assessment . Usually, the LA says no. So you go to Tribunal armed with your evidence. Approx 98% of people win on appeal as the bar is low. The child may have SEN and may need support in accordance with a plan. Tribunals are taking about a year to be heard.

(2) Let's say you win at Tribunal. Then they need to assess your child's needs. They produce 2nd rate reports that play down needs. LA say 'needs aren't that bad, we're not going to issue you with an EHCP. You go back to Tribunal. Another year's wait...

(3) Let's say you win that tribunal. The LA issue a plan but it's a pile of rubbish because they use wording such as "Sophie needs access to a quiet room". That doesn't mean that Sophie WILL go to the quiet room. 'Access' can mean 1 minute per year!!! It will need to say 'Sophie will be able to go to the quiet room for at least 1 hour per day'.Your private reports should tie this kind of detail down a bit better. Back to Tribunal you go to get the plan specified and quantified and to get the specialist provision you've asked for and not the local mainstream school that really don't understand SEND! Another year goes by...

So, to get an EHCP, you're looking at at least a year, if you're very lucky but most likely 1-3 years. All while you're being gaslit and offered parenting classes because 'Sophie is just fine with the support she's already getting in school'.

Most parents win at Tribunal and receive an EHCP for their child. But, you will need to be strong to weather the storm. It can take a toll on your mental health.

Your first step is to request a meeting with her class teacher and the school SENCO. Ask what support they can put in place to support your daughter - this could look like a reduced timetable until she settles, nurture groups, a safe space to go at breaks/lunch, counselling, structured groups to support play skills/ developing friendships.

Ask for this to be set out in an individual learning plan for your daughter. Ask for a date for a follow up meeting to review the impact of the agreed interventions. Ideally this would be in a 2-3 weeks or so. You should also request for your daughter to be listed on the school SEN register. Take minutes at the meeting and then email them back with the agreed action points listed.

PANS/PANDAS is a condition that starts after another illness and has many common symptoms of autism. Unlike autism though the signs weren't there at toddler age and only start after the illness. From what you've mentioned here it doesn't sound likely to be PANS although ofcourse it could be.

A theory

Why would this be PANS/Pandas?
It's not a sudden onset regression.
I think it's a bit of a red herring OP, unless people are referring to the PANDA approach for demand avoidant autism?

I didn't find the home ed groups we went to particularly welcoming so you're not alone in that.

However, there is much more provision out there now. Forest schools, online schools etc. At the moment, just follow your child's interests and lots of play.

My second child had 2 years out of school and I let them be. Like unschooling. They gamed and learnt to type really fast. That was their education. Plus learnt how to get along with others and how to become a leader. Is now doing really well in their clubs, lots of leadership going on and doing well at school. 2 years out has not affected them.in the slightest my child needed that recovery time. Home ed does not have to be like school.

An EHCP will cost you at least £1,500-£2,000in private reports. You won't win specialist without it. If your child is breaking at age 6, then it's highly likely they'll need specialist. The LA will fight you the whole way. It will affect your mental health.

However, for us, I'm glad we got through it as the EHCP will protect them.up.to the age of 25 years.