exhausted grieving 15 yr old forced to school with query CFS

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we are looking for a paediatrician in the SW UK urgently. CFS has been suggested as the likely problem. However the school have linked up with social services and demanded she do a full day at school. 10 months ago this young girl suffered a tremendous loss , and has not had closure yet.

if it were us dragging her from bed I'm sure we would be deemed as unfit parents! The GP has refused to put anything in writing so tomorrow we have to again watch as she is dragged crying from home, only to sleep at her school desk? No she is not left to sleep, she is shook awake by a teacher who tells her to stay awake. We need a confirmed diagnosis and don't know where to go? 

Anyone any  ideas please 

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  • Posted

    Thats heartbreaking - poor kid :-(
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    • Posted

      We really don't know what to do. Until it is confirmed we have to stand back or they have threatened to take her into care. This is a nightmare, we know as I have CFS as does her dad. There is no paediatric who specialises anywhere we can find, adults yes, kids no! 
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  • Posted

    This sounds horrendous. Firstly, I'd stop sending her to school and get a new doctor. There Is a duty of care for the school to your child to give her an education but, not at the detriment to her health. I'm not sure why social services have been involved but, get back In touch with them explaining your concerns and organize a meeting with them and the school as the stress won't help her. Explain that you also want the best for her but feel this approach to send her to school to sleep, isn't working. Get in touch with citizens advice bureau too. It sounds so, so hard but, don't give up.

    Beverley

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    • Posted

      Hi Beverly I have CFS as does her dad. She lives with her dad as her mother just kept calling both of them lazy. We had five visits so this morning trying to get her out of bed asleep. I have a friend with me and fybromyalgia I'm so tired I can't put this together myself . Her mother called in social services as she wanted her daughter to reach her high level of expectation. It's not going to happen. I have found a counsellor she likes. I'll pm the team we have problems with later. I'll also post everything I legally can. Thank you for your interest

      desperate and hurting!!

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    • Posted

      I'm so sorry to hear that, are you step partner or sibling? Hard to tell from message, just wondering as more weight if you are an adult carer. Having more than one person in the house with CFS/ME is hard enough and having her mum being unsupportive is hard. I have CFS/ME and my daughter has had extreme problems at school. She's not classed as having ASD but her behaiours were. I've found it extremely stressful at times to deal with the school and how to treat their responses. I had to for instance, pay for someone to go on atrip to london ( I couldn't have done it) because they were worried she may run off or something. I didn't have the fight in me to say it should be coming out of the schools coffers as she wasn't deemed a risk before and it was them that wanted to do this, not me. I didn't think it fair that the other option was that she didn't go which would have upset her deeply. There is however, I was told, a child at the school with CFS/ME that is being home schooled due to the severity of their symptoms. It may be worth offering this as an option. I know how draining all this is, get CAB to help if you can. 

      A counsellor is a good step. Here it is nay on impossible to find counselling for young people that isn't private. We were put in tough with a educational psychologist from the school (waiting list 6 months) to speak to me, my daughter and the school to come up with an action plan. Maybe request one? they basically are inpartial and aren't on the government agenda to force kids to go to school but to make it easier to educate the child, as it were. 

      I really feel for your situation and hope there is a more positive outcome soon for all of you.

      Best wishes

      Beverley

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    • Posted

      At present I am in their flat staying for moral support only. I have CFS as does my son her dad, so she is my granddaughter. Sorry I'm so upset and exhausted myself. I am on the sofa and have autonomic neuropathy and get claustrophobic too. They both have their separate bedrooms. Yes there are potentially three of us in the flat with CFS!
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    • Posted

      Three generations, that's a tough ride.

      I've read your other replies here and it just sounds horrible what they are doing to your granddaughter. I'm not surprised she doesn't want contact with her mother.

      Also, the local authorities could fund a private tutor if they weren't satisfied with the home schooling before.

      Truly hope sense is seen by the authorities soon.

      Beverley

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    • Posted

      There was a meeting two days ago. The mother( a teacher) turned up and was allowed to lead the meeting, a mother always has PR. It seems illogical but it's true. The daughter refused to speak to her mother and fell asleep on the desk. My son sat through two hours of nonsense. His ex knew it would make him ill, he's been in pain and unwell ever since. 
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    • Posted

      Just wondering, were they married? As PR isn't soley the mother's. I've had to really watch myself around my children's fathers as its easy when you're in good health and know enough about something to take the floor so to speak. It doesn't mean they are more knowledgeable though.

      Get support from as many sources possible-cab, cmhs, gp etc.

      Beverley

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  • Posted

    Really unbelievable at time what the authoraties will dig their heels in over, and bully people into conforming, particularly when its a genuine case with decent people who are needing help and support more than being bullied, sometimes seems they pick on softer targets and leave the hard cases and trouble makers to get away with everything just about. We had it a little with my son, he had a terrible experience at school with a pupil, he just couldnt wouldnt go back, l understood and backed him, as did another mum whos son had been a victim also, the perpetrator ws allowed to stay. Their initial sympathy for my son and other went out the window when we insisted he wanted to change school, they all came out of the woodwork, education authoraties, ss, headmaster, try to bully the boys and us, twisting words, bullying, but law says you can change so luckily found another school nearby, they were reluctant at first, but agreed, he,d been traumatised, but did settle in and like his new school. l think there are quite a lot of people now home school, on religious, social grounds, and more reason it be done of health grounds, you could go to orgs Val has suggested to find out your rights, also mp, but l understand what your problem is, as it is for many for different reasons, lve a friend on here having a battle with authoraties, despite all manner involved, untill you, she, whoevver can get a diagnoses they will use that and deny it. Still l,d find out if there are grounds for home schooling, at the least she,s reached l5yrs so any proceedings take time, l know that doesnt help you on a daily basis, get whatever advice available, What a bad attitude by the teacher to shake her awake, she doesnt know whats ailing her. Contact your mp and let the know whats going on, hope you get help soon, best wishes.
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    • Posted

      Hi Lynne

      Thanks you have problems too. My son and I are here in separate rooms dreading the morning. I have again sent Ri by taxi to a friend. She will sleep on the sofa until the taxi pick her up at about 9pm. Then taxi back, into bed then will go to sleep until about 10am at the earliest if left. around  8.15 or so the so called support worker turns up waking her, then the school welfare officer with a female companion. So we're now getting to 9.30 am, they leave and the social worker turns up with the support worker again. It's about 10.30 am now about the time she would wake?? Didn't they do well!!!  My son can't take anymore, his nerves are shot to pieces. More later.

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    • Posted

      we tried home schooling just before her loss. Couldn't concentrate so SS ( the mother pushing) said we weren't capable. You are right they twist words and use bits they want to. The problem is the mother who keeps calling them saying she's missing when not only is she asleep in bed. She refuses to have anything to do with her mother. Who is a hard faced teacher herself freely admits they're right to wake her? 

      lets think about this do we call in legal representation or the NSPCC I'm sure we would be prosecuted if the shoe were on the other foot! 

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    • Posted

      What a situation to be in, is your son still young and does he go to school, l,d hate that sort of intrusion in my life daily, marching in and out of your home, several of them, must be costing a fortune, there is a madness going on.  l,d a friend, both decent partnes, but their son, cant recall why, but wouldnt or didnt go to school, wasnt for ages, but they make eg dont they, they got court case and fined about 240 quid l think, 

      Yet in my area kids are out of school for months, backlash over that l guess. My son is now an adult in his early 30s, thank goodness we got past it, as he did go through a really tough time in his last year at school, missing exams, time, it happens with some kids, not bad kids, just teen times are difficult for many, my others son had no prob,s the son that did sorted himself later on, went on to uni as a late starter. l would think the authoraties have looked into legal grounds, but might be overstepping the mark, could be worth getting advice, dont know what you can get legal aid for now, otherwise costly, again .c.a.b should be able to advice just read your post to Bev, so understand a little better, l have never known such times, when so many grandparents are taking on a lot of responsabilities worries and grief over divorced adult children or grandchildren, its horrendous, at times when they should be having peace, but l,d be like you also, what caring parents do whatever their kids age, my eldest son lives a distance away, with a partner  had 3 stepchildren, their mum just one left at homenow she l4yrs, my son a dad to her 7yr, split for 2 now back together, much based around money, his, good job, good life for her advantage to hilt, big worry and  he diabetic, but distance away, at least. Youve got it on your doorstep, they should be helping you not making you more ill, its mad, for what its costing in taxi,s and various workers dragging her there, they could send a tutor in for same money, even if half days, aft, compromise, no common sense with them, l guess she,ll be l6yrs not far off. It could well be its genetics, many immune diseases are, passed on weakness of immunity. l,d go with your son to see cab, maybe a solicitors advice. 

      You could also try posting on healthunlocked, fibromyalgia cfs mb, the moderator on there gives good advice on organisations and legals that can help.  Hope you can find a solution and get some peace soon. Take care o f yourself.

       

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  • Posted

    What an horrific situation to be in for all of you!

    You must definitely get a second opinion from another GP and have the school nursing service been involved?

    Contact your local Care Commissioning Group too.

    Does your son get any support through any specialist CFS/ME services locally? What about his management of his own condition with his GP? Is the GP same one as for your g/daughter?

    It really is unbelievable how the school can be allowed to treat a student like that! Is it a council-run school or private??

    I am sorry I cannot think of anymore you can do, except re-iterate what others have suggested re: home schooling, contacting CAB.

    Actually, how about contacting NSPCC? Also, the GP Practice she is registered with have to follow Safeguarding Children rules so speak to the Practice Manager and report your concerns. The surgery should have a "Safeguarding" Lead person too!

    It must be so difficult for you having to cope with this too!

    Sending you all my very best wishes for a speedy resolution!

    Do let us know what happens. :-/

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    • Posted

      The school safeguarding officer is unfortunately a nurse? It's an accademy school. They do have the same GP and none of us get any support. My son has had a breakdown over this so we have now got them poking their nose in too He is a good dad, cooks what she wants whenever she wants it. He also manages to get out of bed to microwave something  for me too. We are a good family that has been broken up by one person like a chain reaction. I also have a son that has had Hodgkin's  disease, a young woman I fostered at age 12. Could not read or write. Just gone thrush university graduated with honors, dumped by her partner when diagnosed with eye melanoma. Two lovely kids to her credit she's gone home with my husband of 50 yrs. I haven't seen him for 3 months because I can't go down the stairs, he has cardiac problems and can't come up. what a mess by this one bad link in the chain!
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