new and need advice regarding teenager with CFS and hypermobility, school threatening legal action

[Naelith]

Hi

I was wandering if anyone has any experience of trying to get schools to understand CFS and hypermobility.

A quick glossery so far is:
In 2009 my daughter aged 11 at the time was diagnosed with chronic fatigue syndrome and hypermobility, her peadiatrician put her on half days at school for almost the whole of year 6 education. We got the CFS under control, it never went fully away but daughter was managing full days by the end of the year and symptoms werent too bad. We missed an appointment and after phone call with pead decided appointments could stop unless problems recurred and in the mean time just keep up with the pacing and keep an eye on her.

Roll on to last year and dd is now 13 and her symptoms have really started to kick in again, I should have made appointment with pead months ago but due to other problems (i have two autistic children I have to take to regular appointments and have had 2 education tribunals going simultaniously along with a divorce and depression to cope with) have only just asked for a re referal last month. While I am waiting to see the pead with dd again I have started reducing her high activity hours and asking school to help with pacing her. I have asked for homework to stop but they disagree with this and are still sending at least an hour a night home, then when she doesnt do it she is kept behind for an hours detention after school. She is also getting detentions for forgetting equitment and not managing to do all her work on time and for being late (she takes the bus and is not managing this well I try to take her sometimes but have another child to get to his special school and one who has to be home educated due to anxiety which I have to be home for).

I asked social services for an assesment and a carers assesment but was refused as my situation is not severe enough to qualify for services as none of my children have severe physical disabilities.

I have now received a letter from the EWO saying that the local authority are takeing me to court for low attendance as her attendance is 84% for this term and this was the same last term. The EWO openly admitted in a phone conversation to knowing nothing about CFS and stated he is suspicious because all her time off seems to be Thursdays and Fridays. I tried explaining that this is because by the end of the week she is exhausted and not just that but she cant stand lights or noise, all her joints crack and pop leaving her crying her heart out in agony, she has migraines almost constantly. She says she keeps shaking and the room spins around too. EWO said I have to supply a doctors note saying she has CFS and this will effect her school attendance. I asked dr for one and they are saying only if I pay £20. Now I could pay the money but I am really annoyed at having to pay to give this EWO a letter stating her diagnosis when he has about 10+ letters with it on from 2009/10.

I am waiting for the pead appointment and as soon as she has seen him he will write to the school anyway explaining what his treatment is. But obviously we have to wait for the appointment first.

What do you think I should do? School dont seem to get it, thanks in advance for any help

[SminkoPinko]

Annoying re £20 but I would pay it and get the letter off to the school and EWO asap. Sorry your daughter is having such a tough time. Sounds like you need to get her back into treatment really quickly. Can you ring and explain how serious things have become and ask for the appt to be brought forward?

[Naelith]

thanks :)

I never thought of phoning the peads secretary DOH... lol I will do that tommorrow and explain how bad things have gotten, failing that I suppose I will have to pay the money for a GP letter.

It just really makes me angry when they have documentation showing her dx

[bochead]

Do you get DLA for her? I don't know why but being in reciept of DLA seems to make a disability "official" in some people's eyes. If you do, then photocopy the award letter and include it together with ANOTHER copy of the original diagnosis and the £20 GP's letter. Also write a quick statement application letter following the instructions on the IPSEA website. Put a note stating that the school's inability to take into account your daughter's medical needs are causing her condition to deteriorate and that if they don't take this seriously ASAP her attendance is likely to deteriorate further. Post the lot off as a bundle to the EWO, keeping copies of course for your own records.

In the meantime the statement letter addressed to Head of Children's Services sends a shot across the bow of the school and will FORCE them to be prepared to be called to account on what steps they are taking to help your child. It's not so much about actually obtaining a statement as you making a stand and saying in a way that matters that you aren't prepared to put up with her being treated like poop cos they can't be bothered iyswim.

If you have time in between looking after your other children ask for a formal face to face meeting with the school senco to discuss how you are going to manage your daughters needs while you wait for the pead appointment. Punishing a child for feeling under the weather is totally counterproductive.

Agree re Pipin about ringing the consultant's secretary.

oh and don't fret cos if you do all the above and they still take you to court they are gonna look like idiots in front of a judge btw.

[CFSKate]

Tymes Trust deal with schools and CFS all the time, perhaps ask their advice?

[CFSKate]

Here is the international consensus primer on ME/CFS, near the end there is a "Letter to educators & agencies regarding young people with myalgic encephalomyelitis (ME)"

[Naelith]

Hi

I have been busy today :) I have spoken to the specialist secretary and she is being seen first thing January 2013 so that is a relief.

I emailed school and asked for a TAC and asked for her IEP'S. Turns out she is on school action plus but has no IEP, no action plan of any kind in fact. I have asked that all homework stop and told them all detentions needs to stop at least until we have had her appointment. They have emailed back not mentioning the things I want actioned but stating she can stop all PE and go to learning support and rest instead.

I havent applied for DLA for her I didnt think you could get it for CFS. I will apply as soon as I have seen her specialist. Also have not applied for a statement before for her as I didnt think the CFS would qaulify. I have been through tribunals for my other two but didnt even think to use this as a bargaining post thanks :)

Thanks for the links also I am going to read them in a minute.

Hopefully I can get this mess sorted out without to much of it stressing out dd.

thanks x

[TheFallenMadonna]

We have a student with CFS. He is on a part time timetable, and has scheduled rest periods in a room with a bed.

[Naelith]

Oh I wish lol :)

[Delalakis]

I'm wondering about going on the attack with the LA. When she is unable to go into school, could dd cope with tuition at home? In fact could you argue that she will get better more quickly if she doesn't have to deal with the journey into school when she is unwell? If so you could say to the LA that they should be providing her with home tuition when she is unwell, and that it is they who are depriving her of education and acting unlawfully. However you do need that medical confirmation of her condition.

[Naelith]

hmmm I think you may be on to something there. I have been thinking of this for a while as she is getting more and more unwell. She sat down after school this evening and it was a good five minutes before all her joints stopped cracking loudly and she was crying for ages with the pain.

She has a confirmed diagnosis of CFS that she got in 2009 and letters from 2010 too, we didnt see the specialist in 2011 or 2012 because we had her CFS under control (but not completly gone). The EWO is just being overzelous me thinks.

My dd2 is meant to be going to this EWO's school too as the LA have named it on her statement but she is autistic and has a severe anxiety disorder along with a host of other problems and he started legal procedings on her not attending to start with. I nipped that in the bud with a sick note that lasts until dd2's tribunal in spring and to be completly honest this stinks of 'if I cant get you for that child I will go after you for the other'

Thanks for all the help :)

[IShallWearMidnight]

I know you have a diagnosis of CFS, but have a look at POTS which is an autonomic dysfunction which can go along with hypermobility/Ehlers Danlos, and actually has some treatment other than just pacing. From my own research (Dd has EDS and POTS), a lot of POTS is misdiagnosed as ME/CFS/IBS - the catch-all "well we don't exactly know what it is, but it seems like it might fit in here" diagnoses.

WRT school - DD has a care plan adapted from this one liked here. DD quite often has a Thursday morning off, as by then she's shattered, but because the school are on board with the care plan, and are supportive, her attendance this year so far is 90% (as compared to last year's 60% ).

PM me if you want more info re POTS, and I'll dig out some more links.