Fibromyalgia Action UK
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Results Day 24th August

Another update...most will know I took my daughter out of school because of issues concerning her schooling.

GCSE Results; 7A's, 1A* and 1B

My daughter was accepted for a small Grammar school in the heart of England. How did we do it? I gave up my job in March and stopped working to teach her from home, I worked hard to look at how she learned and support her...such as

Repetition & Rote learning - Reciting, Repeating and Reflecting (The 3rs)

Techniques to help to focus and structure thoughts (graphs/mind map...)

Determination to excel - clear program during day for study which allowed for sleep and rest.

Memory Games/Visual/Auditory tools learning - Youtube was extremely useful.

The hardest was reading two years of text books in 6 weeks, she didn't realise herself that she hadn't really grasped the content of text books she knew she struggled with reading but didn't realise how much. The school failed to ensure she had extra time or a reader, however she did well. She had hoped to do better but in reality she was not given the tools to really excel. I am hoping this will happen in 6th form.

My concerns relate to schools being unable to cater for young people who have hidden disabilities or young people whose thinking/focus is challenging. Sadly schools do not have audio (text) books. In many ways I was angry that the school underestimated her ability in fact she was placed in English in a class with children who spoke English as a second language because they just couldn't see that behind her disability was/is an extremely bright young girl. Comments from teachers in her jotters were a disgrace.

Anyway she passed and looking forward to studying again in England.

I learnt a lot and might put something together for parents..I am much poorer but when I see that she sees possibilities for her future...I am pleased. (Sadly i believe the school at times was extremely offensive and spent more time dismantling her confidence rather than allowing her to reach her potential, she was not expected to get A's at all!

She will be study French, Maths, Geography and Russian for A level. Wish me luck I am looking for work but I also know I need to fund the following;

A reader (I am not reading her A level text books!)

Study Mentor/Assistant

Extra books (Online/internet learning is not an option when her future exams are on paper, she has to learn how to focus and write on a paper, schools are using internet learning and sites for lessons, when the focus of exams is on paper!)

Oh and I know schools are suppose to have a fund but I have already been told they do not have the money!!!!!

Anyway didn't she do well for a 'fuzzy mind' and 'sore bones'! as she would say.

Now we are just waiting for the Consultant (NHS) appointment, to fight for improved service. a decent physiotherapist!

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Hi there,

I just want to congratulate you and your daughter for what you have achieved between you in such a short time.

I wish you both the very best of luck in going forward to study for A levels, and hope that you can get some help to achieve this.

Best wishes.

GP. 😊😊

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Well done to both of you for working together so very hard what an achievement marvelous story . Hope you get further support you have told the story of yet again the system failing to met the needs. My daughter has changed jobs to start as a teaching assistant she has 2 boys 3 and under so still very tired with new job. I think with learning support has opened up her eyes already how challenging it is I think she will learn a lot along the way but is a lovely girl and will throw 110 per cent into everything . Keep us posted with your daughters progress xx

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Hi wot were the issues concerning her schooling ?

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There have been numerous issues over the years..it started with

lack of attendance and the threat of court proceedings (parent partnership advocated for me).

Denied access to trips because her attendance was too low. (challenged this and won)

Firstly the most schools have said they have had training in FM but in actual fact the last school she was at few teachers were aware she had a disability?...even though I was told they had training and everyone was aware. once they were aware nothing changed. The onus was on her to say her needs and when she did she was usually told she had a problem. (I currently don't know what to believe about training...letters from schools often contradict each other) I have asked who carries out the training..this has never been responded to!

Difficulty in teachers recognising that speed does not equate to intelligence

Difficulty in teachers ensuring lessons are made available (either due to absence or so that she could go over lesson again)

Comments in jotters which relate to 'lack of focus', 'not listening', 'failure to learn' 'pathetic attempt' , 'inability to focus', 'poor attendance', 'could look more alert in class, '. In 2 years in school not one teacher praised her ability until I raised a complaint.

Direct comments about ' inability to get A's so should be 'happy with what she achieves', not everyone is academic!

Repeatedly advised to look at curriculum specification when she was stuck rather than given any help.

Repeated comments about (lack) attendance in front of class mates

She had a Education Plan (with two schools)but they work when it comes to the physical environment but less able to ensure teaching is inclusive. In Fact the plan feels like its an encumbrance to the school to be honest)

Her reading speed was assessed in the class another child with dyslexia performed slightly better than her...the teacher just ignored her and turned to the child and said you can have extra time! (I complained about this and neither English teacher spoke to me again)

Education equipment/resources not available (I certainly didn't know what education aids were available such as a talking pen (text to speech pen). there doesn't seem to be a list of disability aids for education for parents or students

Failed to ensure she was registered with the exam board as having extra needs..she reads at less than 100/min, sound noise and smell a major distraction and pain levels impact on her performance. (Fortunately exams where spread across days. However where there were two exams in one day...she found it exceedingly difficult..she went in sleepy and weepy)

Not one teacher has ever given her specific techniques to learn or indeed none had ever sat and gave a individual session at where her problems lay..so 'cant focus properly'

Quite a significant discrepancy in how one child could be treated to another in her last school (not specific to my daughter, but generally speaking lack of 'fairness')

Attendance seen as a problem...even though any test she had after a period of absence (bar biology) was better than if she had been there.

Alot of this I really didnt know till I left work and took her out of the school... I really started double checking what was being said to me by the school. This is just some of the issues.. What I have said here is also backed up by email responses...

I do believe some schools have tried but lack of training, perhaps lack of resources just make chldren with particular disabilities too much of a problem or invisible

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Oh right

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Hi what age was ur daughter wen she was diagnosed with fibro and what are her symptoms. I know I've had fibro since childhood but didn't get diagnosed till age 42 !!!

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She was diagnosed at 11years..she started having pains and being tired from about 9.

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Oh right

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Congratulations to your daughter and a huge well done to you for helping her to reach her true potential. Xxx

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Well Done - it's fantastic news for both you and your daughter plus it shows that given the right techniques children living with chronic illness can do very well indeed. I would have most probably done exactly the same in your situation as the schools are struggling to help children living with these conditions.

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What an absolutely amazing achievement that both you and your daughter have got! You should be so proud of yourself and she is also very lucky to have you! I was finally allow a laptop in my last year of A-Levels as I couldn't write fast or for long; but by then the damage had already been done! I think that schools really need to sort themselves out and learn more about all of the different types of disability that are out there!! 💗💗

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Schools have bursaries (just find this out) for students experiencing challenges..in addition the SENCO (Special Education Needs) has a budget that students can tap into... this is limited however my daughter has managed to get £1200 to assist in purchasing equipment. I am just learning this but I think that there is a lack of training..and I think its difficult since so few young people are diagnosed its difficult to talk to each face2face about what works and what doesn't and how to argue your needs.

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