Dd has tourettes, what are the schools responsibilities?

[Ddwithtourettes]

My 11yo dd has had increasingly worse and worse tics over the last few years.

She now has a diagnosis of tourettes.

The schools solution is to have dd in part time so she isn't disturbing the class and she isn't getting stressed, but this isn't a long term solution.

I've been trying to find out what the schools responsibilities are, but can't find a lot online and have had many dealings with the head teacher where he does the bare minimum and blatantly lies, so I need to know what they have to do with regard to schooling.

Before these last couple if weeks of constant tics there was just the odd day here and there where it was really bad so I have just kept her off, but now it seems more longer term attacks it isn't feasible.

Can anyone please help me? I know absolutely nothing about what is reasonable to ask or how to help or what help I can ask for.

(In Scotland if that makes a difference)

Not sure how the Scottish system works but…
Where is the school senco in all this?
Is your Dd on their Sen register?
Does she have an EHCP or even an IEP?
What is put in place to support her.
Is it purely vocal tics that are the problem because I can’t really see how that can be used to justify her being kept out of school.
Reduced timetables should only be used when it is helpful to the child themselves.
What have the doctors said about how she can be helped to deal with her diagnosis?

@Smartiepants79

Not sure how the Scottish system works but… Where is the school senco in all this? Is your Dd on their Sen register? Does she have an EHCP or even an IEP? What is put in place to support her. Is it purely vocal tics that are the problem because I can’t really see how that can be used to justify her being kept out of school. Reduced timetables should only be used when it is helpful to the child themselves. What have the doctors said about how she can be helped to deal with her diagnosis?

Dd has been referred to a paediatric team to get the next step sorted. I'm not really sure what the plan is, other than ruling out some underlying causes and them possibly looking at medication if needed, although I'm really trying hard not to let that happen until there are no other alternatives left.

She has vocal tics and hand/arm/neck/facial tics too.

Currently at school there is nothing in place but I have an appointment on Friday to discuss things with the head teacher and I want to arm myself with some knowledge on the things they have to do.

So I should be asking for her to be put on the SEN register? And also asking for SENCO to be involved?

Sorry to sound daft but does tourettes fall under SEN? I hadn't really thought about that before.

Thank you for your reply

It most definitely falls under SEN. I’m sorry I’m not much more help as I work in England and I don’t know if it works the same way.

Anything that affects your child’s ability to successfully access her education is a special educational need.
I’m quite shocked that school have done nothing and yet are suggesting she is on a reduced timetable. That is absolutely not an acceptable answer. It is an absolute last resort for even the most disruptive child. The bare minimum should be some basic adjustments to help minimise the impact on her education. How is she doing academically? Do her ticks stop her learning?? Are there things that you know trigger her that could be avoided in school? Her own safe learning space, learning breaks.

Find out who is your school senco.
There must be some specific parents groups who have kids with similar issues who would probably be massively helpful. I suggest you do some research and see what’s around.
I don’t want to freak you out but you definitely need to start getting school to step up, she will be in secondary next year and there will need to be plan in place.

Unfortunately the heads answer to everything and every child is reduced timetable, even kids who are being bullied have to disrupt their learning. He is a really crap head teacher, I've had a couple of complaints upheld already.

Dd is doing really well in school at the moment, but she is getting worse and worse. Her tics tend to be set of by loud noises and flashing lights, I've already had to complain about a particular child deliberately setting them off by screaming at dd just to laugh at her tics, the teacher dealt with it very well though.

The reduced timetable has just been for this week as they have been so bad, but Friday will be the discussion about where we go from here. The head seems keen for a fully reduced timetable, but the kids all missed so much last year I'm not keen on it and I don't think it benefits dd.

Its a very small school in a very small area so there isn't much in the way of help here, the paediatric team dd will see is about 4 hours away.

I've tried giving her coping strategies in school, and they worked for a time, but nothing is working anymore for her unfortunately.

Secondary school will be much better, they have a dedicated learning lounge space and lots of HSL workers who can help out so I can't wait for her to go there, just need to get her through the last 6 months or so of primary school.

Again, I don’t know if the Scottish system is different but what your describing sounds like a form of exclusion - NOT and acceptable response and basically illegal.
This might be worth reading.
asn-aberdeenshire.org/wp-content/uploads/2017/08/Pupils-not-in-full-time-education-guidance-vs1.1.pdf
I think you need to get some better advice from someone local to you.
You’re going to have to go in ready for a fight on Friday.
Be clear that DD will not be missing any more or her education and they need to come up with some better ideas for how to support her.
I’d start threatening to contact governors or even ofsted. And I’m a teacher and would support school in most things.

Scotland doesn't have sencos. We also don't have a sen register, that's English schooling terminology. There is always one member of staff trained in additional needs It will be a support for learning assistant your daughter would have in school.

Who diagnosed your dd? Scotland CAMHS/paeds attend TAC , team around the child meetings which are still via Teams this now.
Purpose is to identify what support your dd requires in school and they have to provide it. So if loud noises are a trigger then school need to find a quite room/ space for her to learn.
I suspect the HT hasn’t a clue in this area if he is handing out reduced timetables. These are usually offered for those pupils who are struggling to stay in school.
I’d suggest you go back to him and ask what plan he has to provide full time education which your daughter is entitled to while meeting her needs. It’s not rocket science for schools, inconvenient yes.
Medication often makes Tics worse unfortunately.
Do not be fobbed off by the HT. Read up as much as you can on Tourette’s which comes under Neurodevelopmental disorders.

@Smartiepants79 we don’t have school Governors in Scotland, thankfully

[quote giggly]@Smartiepants79 we don’t have school Governors in Scotland, thankfully[/quote]
Why thankfully?? Who are the school leadership answerable to in Scotland then? If the head continues to be uncooperative who does the OP go to next? The SEN provision at this school sounds abysmal. Who should be ensuring these children’s education?

OP do you know about Enquire? enquire.org.uk They are really good about providing advice about education in Scotland. There's a section about part-time timetabling. enquire.org.uk/parents/part-time-education/

You need to contact Tourette Scotland- if you haven’t already. They will be able to advise you

My kids (no longer kids) had a traffic light system for when they needed a break to tic. I educated the school a lot about Tourette’s- but not all schools are receptive.

Tourette Scotland is pretty active about educating teachers about the condition and it’s complexity

@Smartiepants79 school leadership are answerable to the local councils education department.

Here in Scotland we don't have senco, Sen registers or governors so most of the advice here isn't relevant. We have assessors that come into school from ASL (additional support for learning) that help us at school level and suggest measures we could put in place for individual dc, suggest further referrals and offer support for parents outside of school too. The HT will identify which children need to be seen. We will have a child planning meeting with as many agencies involved as possible. Definitely ask about this as we currently have a pretty large backlog due to covid and also more dc needing extra support. The parents that push harder seem to get to the front of the queue but there's still a wait. In the mean time a quiet space for your dd, the availability of some 1:1 support. Liaise with a specialist Tourette's organisation for more specific advice. Glad to hear the high school has more in place for her.