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Real Examples: Educational Modifications

Let’s start this document with the kind of negative educational experience that many families face when they have a child with ME. Then let’s show you that it doesn’t have to be like this, and that many schools and educational institutions are far more enlightened.

Here is an extract from an email which my son Mark, a senior software engineer, received from a parent through the Young Action Online website:

Mark,

First may I congratulate you on your excellent web pages. Very much appreciated by us parents and sufferers looking for help, information and advice. It can be a little isolating sometimes dealing with this condition and people’s prejudice, your pages are a lovely breath of fresh air and common sense...

My daughter is taking her A levels this June and we have struggled for three years with the prejudiced attitude of her school toward ME/CFS (there are five pupils in her year now who have contracted this illness).

When Ruth took her GCSEs I found your pages outlining the exam boards’ special arrangements for children with health problems essential in getting her extra time and deferred exam starts etc. The school had told me that there were absolutely no special arrangements available. I was shown your information quite by chance. The exam boards do not make this information available to parents, we have to rely upon the school offering the help, which Ruth’s school would not do.

Now Ruth’s school is being obstructive again, making special arrangements for pupils with dyslexia but not to Ruth with ME... The head even told me that he did not agree with the medical statements sent in by Ruth’s GP and by her specialist...

Sorry to go on, I’m sure you hear of many people with these problems, but it seems so heartbreakingly unfair when she has tried harder than most children to attend school and complete her work that she is not only not recognised but is shunned in this way.

Many thanks.

Mrs R.

Comments

1. If you face this kind of unhelpful attitude, it should be explained to the school that in ME/CFS the brain commonly suffers a drop in oxygen perfusion as a result of physical and/or intellectual effort, rather than an increase, as is normal. This can be observed on brain scans. It means, amongst other things, that the child cannot think properly. The blood flow can be seen returning to normal after rest. See the YAOnline document ME and Learning: Problems and Solutions.
2. Cognitive dysfunction such as this qualifies a child for extra time in exams. Rest breaks can also be arranged. See the YAOnline document School Examinations and ME.
3. A school which refuses to follow medical advice from the child’s doctors may be considered liable for the consequences e.g. if the child became more ill as a result. An educational professional is not qualified to challenge a medical decision. Take legal advice if necessary.
4. If you do not feel the recommendations from a doctor are suitable for your child, you can seek a second opinion.
5. The TYMES magazine has an Education Special available for £1.50 from PO Box 4347, Stock, Ingatestone CM4 9TE.

This is a collection of experiences which contradict two popular myths:

1. The myth that education is always inflexible;
2. The myth that you have to get all your qualifications (such as GCSEs and A-levels) at the same time and to the usual timetable, otherwise you will miss the boat.

The law gives you the right to access education according to your circumstances.  So ask for what you need, and remember that education can continue lifelong - you have certainly not missed the boat if you are unable to fit in with the usual production line schedule. Production lines are fine in their place, but they aren't for people with ME.  I sometimes wonder whether they are really helpful for anyone!

For example: if you learn a musical instrument, you take each exam as and when you are ready for it. Age doesn't come into it - you could be seven or seventy. There is much to be said for other exams being set in the same way, and many eminent educationists have been considering this for a long time.

Send us your own examples of helpful experiences to be considered for this list. You may also like to nominate anyone who has been particularly helpful to you for our Roll of Honour.

How Special Arrangements helped
excerpts from correspondence with Rebecca Lee

Like all our young members, Rebecca was sent a birthday invitation from us, to list any of her achievements, whatever they were - not necessarily educational. The names of all those who responded are listed in Tymes Magazine (Issue 35) along with selected quotes. Rebecca's letter was quoted as follows:

"I am proud that I have managed to come to terms with my illness. I used to play badminton in national competitions and it used to upset me to go anywhere near my old badminton 'haunts' but now I go and cheer on my teams and fellow county players. I've also been asked to be my county team's mascot and it means a lot that they still want me as part of the team."

When we asked Rebecca for permission to publish her letter she surprised us with the following update:

"My main achievement has been getting my GCSEs. I had 5 hours home tuition per week and managed to get 2 A*s and 5As. I did take my exams at home and had extra time which obviously helped considerably."

Naturally, we asked if we could also publish this good news, and we then learned how Rebecca's school had helped her:

"Thanks for the congratulations. I'm so proud of my GCSEs but I'm almost embarrassed about telling other people with ME about them because they have so many problems with tutors and exams. It's all down to my school that I got such good results, they supported me all the way and even sent some of my actual subject teachers out to home tutor me. Anyway, thanks again, Becky."

We received many other "Birthday Achievement" letters listing exam results gained through Special Arrangements. We would like to suggest to all schools that they seriously consider levelling the playing field in whatever way they can for pupils disabled by ME. This condition seriously affects thinking processes and it would be wonderful if all students and pupils with ME could achieve the maximum that they are capable of.

For advice and support for teachers, children and families, or to book places at the next ME course for educational professionals, please contact Tymes Trust on 01245 401080 or email Jane Colby via the website www.youngactiononline.com.

Taking A-Levels
From a letter by Julie Hewitt, Young Action Online member

I developed ME in February... just a few months before I was due to sit my three A-Levels. Although there wasn't much improvement in my health, I decided to attempt one A-Level (German) in June [the following year].

I sat the exam (five papers in total) at home. I started the morning papers at a later time instead of the usual 9.15am. I had 50% extra working time and was allowed resting breaks whenever I needed them. I was also given the use of a scribe. So although it was still a struggle to sit the papers, it was not an impossible task. Just being able to take the exam gave me a boost of confidence. I was given a little extra boost today when I got the result of the exam - B!!!

I would like to thank you for your encouragement and help. Thanks to the special arrangements, I was given the opportunity to prove my ability without being disadvantaged by my ME.

I hope that my little personal triumph [hardly little! Ed.] will encourage you in your invaluable work in the education system - sometimes they actually do get it right!!

Gaining access to Higher Education
From a letter by Glenys Thomas, Tymes Trust Carers' Contact

When Katie had been ill for about two and a half years (she was first ill on her fourteenth birthday) and had missed school for all of that time, I went to the annual gathering of Institutes of Higher Education (Polys/Universities) at the National Exhibition Centre, Birmingham. They were meeting under the title "EDUCATION 2000". I visited several of the stands and to each one said, "I have a daughter of 17 who has not been in school for nearly three years due to M.E. She has no GCSEs but would like eventually to go on and take a degree in an area such as marine biology/environmental sciences. What do you suggest we do?"  Without exception people were most helpful and those who understand M.E. suggested that she should, at her own pace, take English and Maths to start with. We were assured that the system would take into account her disability and there would be an offer of a place when the time came for applications to be made. One academic/admissions tutor even gave me his name and home telephone number "in case there are any problems". That afternoon made a big difference to Katie who at the time was too ill to walk around the exhibition... she felt such relief to learn that she did not have to go through the regulation hoops to gain a place at an institute of Higher Education, at a specific time.  She could go gently on at her own speed.

Claire made amazing progress studying at home
From a letter by her mother

She was always very academic and yet was failing at school because of poor health and shocking attendance. In 1997 she took 3 GCSEs (Music, Maths, and English Language) and got grades A, A, and A* respectively. Last summer Claire did 2 GCSEs and an A Level exam. She studied English Literature GCSE with a tutor who came every 2 - 3 weeks; Psychology GCSE and Sociology A Level were done by correspondence course. She got an A* for both GCSEs and a grade A for the A Level, and did all 3 within less than a year. She came out of home education with 5 GCSEs and an A Level and the realisation that she was able to study at her own pace, was self-motivated and could do well. And she also learned how to pace herself. She also felt very proud of herself as she had succeeded in getting 5 GCSEs and therefore did not feel that she was behind her friends who had been through school. She had her 17th birthday last month and has now started driving lessons.

College and the provision of help for disabled students
from an email by Sarah Mills

The meeting with the college went very well. In fact, the lady we saw told us about things I could claim for, such as a Dictaphone and a laptop so it would help me. I am going to claim for a "note taker" for lectures etc. I've also got some extra 1:1 tuition for 1 hour per week. The form for disability allowance will get sent off very soon!!! May I thank you for your help regarding this! You certainly are a lifeline!!

Note: Further Education Colleges are often very sympathetic to students with ME and you can register as a disabled student (like Sarah, above) and receive many kinds of assistance. Don’t shy away from the word "disabled" as it can be your passport to the help you are legally entitled to. Some colleges run courses for students under 16. You can study many kinds of courses.

College and the understanding of an ME student’s needs
from a letter by Rosemary Shorter

Throughout my illness the principal and college staff helped me in every possible way to complete my A levels (I was 18 months into my courses when ME struck). As soon as it became clear that I would not be well enough to do a repeat A2 year as planned, plans were made for me to have home tuition (and cut down to 2 A levels) to suit the needs of my illness. The once a week lessons were to prove a real lifeline to me over the next 3 years, enabling me to feel I could still continue with my education at the pace the ME dictated.

All the teachers who came out to help me were marvellous, taking the trouble to listen and learn about the ME (very willing to do all the writing etc. which it was too painful for me to do) often bringing flowers or little gifts, fitting the lessons around my ‘best’ times or, at times when I was too ill to do any studying, just being a friend. I enjoyed the lessons enormously and the intellectual stimulation helped to keep me going.

The principal was always in the background sorting out such matters as liaising with the universities and very kindly making sure that the teachers who came out to me (even to supervise my exams) were people I already knew from before the illness. This helped save energy as meeting new people can be incredibly tiring. He was continually supportive and alert to the fact that my return to health was the all important factor. I did offer a couple of times to try and come into college for the (one to one) lessons but as he sensibly realised it would have proved too much for me. Another understanding decision which he let my parents and me make was (after being completely wiped out by doing my English literature exams in 1997) we thought it best to leave the history to the summer of 1999, as my progress had not been as rapid as I’d hoped by Easter 1998.

College, especially the exams officer, was brilliant in sorting out all the special arrangements I needed to do the exams. Most importantly (unlike some of the medical profession) all the people at the college believed in the physical nature of my illness and understood and sympathised. I will never forget all this, especially as having a chronic illness can make you at times particularly vulnerable.

A special thank you should go to my history teacher, who did the lion’s share of my 2 years home tuition. Her efforts on my behalf were exceptional. Even the year when I was concentrating on my English only, she often sent me cards and we spoke on the phone when I was up to it. She is not only a brilliant history teacher but she became such an important source of contact with the outside world (beyond my immediate family) especially with all my friends away at university in the term time. She always had snippets of news and chat to interest me.

She also helped by putting sections of the textbook onto tape which was the only way I could absorb this material. She gave her time to me so generously, and gave me invaluable encouragement not only with my history work but with my illness. She listened so carefully to what I said about the ME that she came to understand the nature of the condition (and how it affected me) almost as minutely as my immediate family. She rejoiced with me at every step forward and sympathised with any setbacks, sending me a card every time I was too ill to have a lesson.

I enclose 12 x second class stamps to nominate the college for the Young Action Online Roll of Honour and I just want to say what a good idea I think these certificates are. I hope you’ll agree this is a shining example of an educational establishment supporting a young ME sufferer.

Note: You can find this nomination on the YAOnline website along with details of the college.

Studying With ME - how Open Learning can help
Sarah E Smith

I was 14 and in the 3^rd year of secondary school when I became seriously ill with ME... In May 1993 I became too ill to get out of bed... I was lucky as my decline in health was well documented by both my GP and my school and there was never any question that I was genuinely ill.

It became apparent that I wouldn’t be returning to school for a long time. I was assessed and was allocated a home tutor for five hours a week. I was still unable to do any academic work so she brought her water-colour paints and let me paint. Countless times I was too ill to do this, but she was very patient and gradually I could do more at a time. It was incredibly hard to go from being an academic student to only being able to hold a paintbrush for short time. Thankfully there was no pressure form the school or my tutor to produce any written work and they let me recover at my own pace.

As I improved the school provided a lap top computer as I found, and still do, that typing is less painful than writing. In April 1995 I managed to attend school for one hour a week to gain the RSA Computer Literacy and Information Technology 1 certificate. I worked with my tutor in a quiet corner of the computer suite and I got the certificate in the Summer.

Sept. 95 proved to be a big turning point. I was 16 and therefore no longer legally required to attend school. The funding for my home tutor was removed and I was left with no educational support. The school offered to let me attend GCSE classes but I was still too ill for this to be possible. I contacted the local college who suggested their Open Learning Centre. This service offers a wide selection of courses studying from home by correspondence. It proved the perfect solution. I started in Oct. 95 with GCSE Maths. I could work at my own pace and could take as long as I wanted to complete the course. My tutor was only a phone call or letter away and I could arrange a tutorial when I needed to.

I was getting on so well that in February 96 I registered for GCSE English. I was still unable to write by hand for any length of time. My tutor was very helpful and found out that most of my coursework could be typed and only one piece needed to be handwritten. I therefore completed the work using my computer and then, over several days, produced a handwritten copy. The oral sections of my English course were done with evening-class students at the college and my tutor took me there and back herself. Everything was done to make studying as easy as possible for me.

In Summer 97 I was ready to take my exams. The Examinations Officer was incredibly helpful. She said that I could take my exams at home or at college, depending on how well I was. I decided I was strong enough to attend college and she arranged rest breaks, supervised in a quiet side room, for all my exams. I gained the highest grades available (A* and a B) and received the Open Learning Award for my achievements.

In Sept. 97 I was well enough to study GCSE Double Science as a day student for 9 hours per week. The tutors were very helpful and I coped well by having rest breaks during lessons and going to bed as soon as I got home. There were times when I was too ill to attend but I still managed to complete the course.

During 97 I also studied English Literature through Open Learning. In Summer 97 I took my exams, again having rest breaks and the use of a computer, and I achieved three A*s.

Unfortunately I suffered a relapse after starting A levels as a day student so gave that up and studies GCSE Accounting through Open Learning.

Note: We heard from Sarah five months later. She wrote: "I have passed GCSE Accounting with an A grade." She was starting an NVQ in Accountancy (the AAT Qualification) by studying two evenings a week so as to qualify herself to work part-time or from home.

Information about Open Learning

Dr David Bosworth, an educational technologist who has written and edited open learning texts, writes:

(excerpt from What is Open Learning? published in the journal of the Author/Publisher Network. Dr Bosworth self-publishes an open learning newsletter as well as writing for conventional publishers.)

Further information for schools:
Young Action Online website Documents Index.

Zoe’s Win by Jane Colby:
Includes a Teachers’ Code, a dramatisation of a case to be read by schools or individuals (also helpful for friends or family who may not understand) and key information for teachers about the type of learning most suitable for pupils with ME. This includes a section of practical hints and tips that work. The book also contains a personal message for the young person to help them cope with their illness. Published by Dome Vision and available by post for £7.95 (cheques payable to Dome Vision) from: PO Box 4347, Stock, Ingatestone, CM4 9TE (orders are sent post-free), from bookshops, or online via www.youngactiononline.com.

Young Action Online    PO Box 4347    Stock    Ingatestone    CM4 9TE