sildil | Lizzie

Struggling with Lizzie and school a little at the moment. We had difficulties last week with an intransigent Art teacher and a frantic deadline for entry for Lizzie's Art AS level. For those of you outside the UK, the AS level is a totally spurious, time wasting and pointless exam that is there only to create pressure on kids and teachers and to waste valuable teaching and learning time. However it 'has' to be taken...apparently.

We managed at the last minute to emotionally blackmail the head of Art into allowing Lizzie to submit (at OUR expense, mind) but I am still unhappy with the lack of support for her and the pressure to 'try and do a bit more' which actually is counterproductive.

Anyway, a glimmer of hope on the horizon, I am in touch with an organisation called 'Tymes Trust' (The Young M E Sufferers) who are particularly thorough, knowledgable and helpful regarding educational matters and young people. I already know far, far more than I did yesterday about what the school is obliged to provide and am going into work today armed with most of it.

I don't feel as if we are alone anymore.

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YAY! Knowledge is always a good thing! I hope you can work something out with the powers that be and I'm so glad you're feeling more supported. That's 1/2 the battle, isn't it?!

Now if I could just get some better support for my fibro issues... Then again, I work for the church, and we all know how dysfunctional that work ethic is. Work 'til you drop ded, all for the Lord. Gah.

Yep totally dysfunctional, which is why most priests and vicars end up over stressed and utterly miserable!

Yeah I am hoping that things might be clearer at the school soon. I think that they don't really understand just how ill Lizzie is at times.

Tymes Trust sounds like a great thing - it will hopefully be a help for your and Lizzie not to make you feel so isolated and helpless anymore.

I really wish the school would be more supportive; at times I wonder how it comes all sort of violent behaviour is tolerated and the rules twisted and bended to accommodate everybody (bullies, anyone?), and if there is an illness-based problem, they act "strictly by the rules". It's a joke, really, but not a funny one. >:(

Hmmm yes. Since I enter in all the behaviour reports I see what the kids DO 'get away with'. However then you become aware of the home life they come from and it really is hardly surprising they are disillusioned, unhappy and disruptive.

Still, I think that I have a clearer understanding now of what Lizzie can and can't do, and what she WANTS to do and, more importantly, what the school is legally obliged to provide and accommodate.

You know...sometimes blackmail what it takes to get what you deserve. Ridiculous, yes, but true.

Go get 'em, Sil!

Oh yeah it does work. I am still not certain that the way we are going is the RIGHT way yet, BUT we had no real time to make a proper decision, but at least I have bought a bit more in order to think things through. It's better to at least have Lizzie entered and then change our mind and decide not to, than not be able to enter her if we DID want to, if that makes sense?

We have the same tests in the US, they start in third and go all the way up to 11 and they HAVE to pass them in order to graduate. Its all useless knowledge and the kids lose a lot of learning time in order to study.

I'm glad you found that organization - good luck today! I'll be thinking of you.

hugs for you and Lizzie

Thank you and its much appreciated. Yeah the UK is test-mad and it ISN'T for the child's benefit it's PURELY to judge the SCHOOL'S performance.

AS levels are a waste of time, wonder which beauracratic time-water came up with that one.

I have total faith you will fight Lizzie's corner and win and this 'Tymes Trust' thing looks like it had and will not only give you the information you need but the support as well.

Still think ditching Art is better. Media Studies will at least give her something to focus on rather than giving up A levels entirely, but without nearly so much pressure.

Yes I need to phone the guy from Tymes Trust and sort out what Lizzie can do to work the Art to suit her more, but we are both thinking it might be better to just do one A level. Tymes Trust seems to think that this is perfectly in order, it's only the school that say 'oh but it isn't allowed', which seems ludicrous to me.

I'm so glad you found that organization! I hope the school will do a better job of accomodating her. Here in the states, because of the American's with Disabilities Act, you can get paperwork pushed through after much testing and yakking to get some special accomodations for your child (Fauntling has a small number of them) but it's still a fight getting the school to stick with it. Good luck to both you and Lizzie!

Yes in THEORY that's the same here, but there is so little you are TOLD and it's ridiculous that you have to find out stuff yourself. Having read up stuff yesterday I found all sorts of little things, that I think we should have been told routinely as soon as Lizzie was diagnosed. For example, the special access arrangements for her exams; the school KNEW she had CFS/ME last year with her GCSE exams, and she did have a letter that went with the scripts saying she may not be working well, but when she started her AS level year, no-one said that if she got a letter from her therapist she would be entitled to longer in the exam, breaks, to take food or drink in and a separate room where it is quieter. It was her therapist who told us this. It's so often the case that is it just too much trouble.

Yes, yes, yes, I have the same problem with my son, and his situation isn't nearly as difficult as Lizzie's. I talked to his teacher two weeks ago about getting some accomodations and she said his grades were still too good to get what I wanted, even though he's doing poorly. Then I found out from another mom today that what I was told is total hogwash. It's almost like you have to become a lawyer so you can make legal threats because like you said they will do the least they can do, or get away with.

Yes EXACTLY. I appreciate that teachers themselves often don't know all the ins and outs of such things, and that entitlements are a minefield of deadlines/reports/special arrangements/doctors letters etc. BUT we have a Special Educational Needs Officer (SENCO) at the school, and I am POSITIVE that she knows nothing about Lizzie's circumstances, yet on the website I found there is a report of recommendations that you can give to the school SENCO JUST about dealing with ME/CFS sufferers. If the teachers don't know themselves, then why the fuck don't they routinely pass the information on? It should be just part of the standard response.

In my experience he only way you can ever get schools and teachers to take any notice of you is to complain like buggery, and even then, they take the attitude that it's the complaining parent which is the problem that needs to be resolved, rather than what you're complaining about, but keep at 'em - you'll soon have your credentials as a fully paid up member of the Awkward Squad, and they'll ~~hide under their desks when they see you coming~~ treat you with more respect.

Oh yes, definitely a member of the Awkward Squad. I can see them flinching already!

Lizzie

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