Aibu to keep my daughter off school?

[Lilacbluewaters]

I am so stressed and this is weighing heavy on my chest. My daughter who is nearly 6 has struggled ever since starting school both mentally and academically. During the spring/summer this year she completely shut down. Her tics were consuming her, she was just a shell of herself so I took the leap and de registered her from school as they were offering absolutely no support for her as they said she was fine in school. Since this time we have moved house (we were living in a very mouldy house and it was not doing any of us good).
we live in a new area now and my daughter was feeling a bit lonely as it is very hard to socialise home educated kids. So we had a look around the schools in the area and one of the best is full so she couldn’t get in there but she has been put on a waiting list.
so she started school 3 weeks ago and I thought things might be okay but she is breaking down again. She’s not eating and drinking enough, her tics are getting worse, she is going from extreme highs to lows. She’s will sit in silence and just burst into tears. She is really struggling and doesn’t quite understand herself how she is feeling. She finds it hard that not everyone wants to play with her but then she contradicts herself and says she likes to play alone. Her sleep is another story, now she’s back at school she must be getting only 7ish hours and she is exhausted. I don’t know how she can be learning anything in school because she is half asleep.
I have kept her off today and the school office were just so pressuring saying “I urge you to bring her in” but I said no that she is not coping and I don’t want to have to pull her out again. Am I in the wrong here?
what do I even do, where do I stand here? Can I keep her off school? I am worrying about her education but also how can she be learning in this state. I have read online the local authority have to provide an education when a child is out of school but how accessible is this? Anyone been through anything like this?

Have you spoken to her doctor? To the school? What support is available?

Ah so sorry. Sounds awful for your daughter. You definitely need to access support. Definitely speak to your GP and book a meeting with the school Senco (special needs coordinator). Keep communicating and pushing for help. I wouldn't remove her from school yet as they will just say we can't help her unless she's in.

Yes, she has been referred to see a paediatrician but that is months waiting list. She was also referred to camhs but was rejected. I have a new doctors appointment for her this mOnth and I am asking for more support and another referral to camhs

Please consider posting this in the PANS PANDAS UK support group on Facebook too

School won’t like it if you keep her off (attendance is more important to them than your child’s mental health 🙄) but they will have to deal with it. Personally if my 6 year old was as miserable as you say I’d be keeping them off too. Be prepared for a fight though as they don’t take kindly to it but it may well help speed up support being put in place. Be your child’s voice and advocate.

Your alternative is to pull her out completely and home educate her as before. If you need any advice on this I can help (ex primary teacher now home educator).

Do you think in the meantime she’ll be able to handle going for short days- sort of gradual entry- 1st week for 2 hrs a day, 2nd wk for 3 etc?

Google 'not fine in school ' and Naomi Fisher. Many, many families in your position. It's a difficult road, but there is a lot of support available.

I came on to flag PANS PANDAS too, I see someone else got there first! Assuming you know about this condition but just in case not…

I think you have to decide if she is going to go to school or be home educated and then throw all your resources behind that decision and stick with it, because chopping and changing is going to add to the anxiety.
She is not going to adjust to school unless she is there, but clearly she can’t cope with being there in the current form. So how can the school support? What does she need to be less anxious in school?
My dd is EBSA, currently she is on a customised timetable that she helped put together, based around an assessment of what aspects of school made her most/least anxious. Who can the school get to support them? Do they have a schools mental health team? An ELSA? Can she see an EP? What about a reduced timetable? Flexischooling?

The school get all sorts of shit from on high if their attendance is poor so they will try to get you to get her in.
As a teacher it is really hard because we so often get told that the child who doesn’t display any problems in school is having huge problems at home. I’m sure this is often the case but it’s hard to help with as we simply don’t see it.

Withdrawing and home educating is certainly an option worth considering.

Can you go to school in the mornings - main lessons then.

Can you volunteer to get a feel for school and what’s she like?

Could you get school involved more - I mean what do they see/think?

Work with the school not against, they have access to agencies that could help.

You can't just keep her off without the necessary paperwork to back you up and have no consequences. If she is registered with a school then that's where she needs to be until you have the medical evidence to back up your decisions or do what lots of families do and deregister.

You need to get her an EHCP started you can do this yourself.

To go into school and have a face to face meeting with the SENCO to get assessments in progress and reasonable adjustments in place - this could be part-time time tables, quiet place at lunch to recharge.

You keep on at the Drs or go private by taking out a loan so she gets the assessments that she needs.

You keep home low demand and relaxing and prioritise her spending her energy on her school hours.

Trust your own instincts...always! You know your child best.

My child had a breakdown in year 7 due to lack of support in primary school and denial of needs. Apparently, she was always 'fine' at school. I knew that she wasn't.

You will be gaslighted by the school.

I've since fought for an EHCP and my child is now in a specialist setting. Still a long road to recovery but getting there.

If I'd had my time again, I would say to home educate.

Join some national.home education Facebook groups for support.

For CAMHS etc, it's a case of she who shouts loudest. That said, if she's not in school, she'll probably be better.

Apply for DLA so you can spend that money on home edding. Contact your local council's money advice unit for assistance with applying. If your child has greater needs than am average 6 year old, you are likely to get it. No diagnosis required.

Of course you are doing the right thing. Her physical and mental health are the most important things. I think you will need to keep pushing to access help and support though. Children can always stay back a year if necessary. Keep pushing and advocating for her! 👍

What is PANS/PANDAS?

Do you think possibly adhd or autism?
As they can be associated with tics
Has she had or got friends?
Does she know how to make them
Generally have sleep issues?
Tantrums or crying?
Would she prefer to play with the boys?

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.

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?

A theory

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.

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.

Hi, thanks for the message. What do you mean by an EHCP will cost thousands? I’m all new to this.

Thank you for the post, I will be sending an email to request this

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.

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.