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Mumble

So close to giving up

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I really don't know what to do, I can't stop crying and I'm so tense my body aches all over.

 

I really enjoy my course, my research topic and I want to be successful to prove to myself that I can achieve after all the negative comments I've received throughout my childhood and education and also to prove to the 'establishment' that disability isn't a barrier. But it is.

 

I've just had a meeting with my supervisor (who knows about my ASD dx) - I went in really pleased with the progress I've made and the work I'd done. 15 minutes later I was in tears having been told off for not doing what I was supposed to do - it wasn't something I was told I had to do (I had followed the directions explicitly) but apparently I was supposed to infer that it was required - and of course I didn't. This isn't the first time this has happened and it seems to become more regular as the demands of the course intensify. I'm missing work, opportunities, expectations, all because I'm not picking up on the clues - the between the lines stuff and then it's seen as me not making the effort - when that is so far from the truth - if I knew I had to do these things, if they were made explicit to me, I would do them (and they are all things I can do easily which makes it so much more frustrating) and I spend so much time and energy worrying over whether I've done the right thing and interpreted the tasks correctly.

 

I am so close to just turning round to the university and saying "forget it, you win" because I can't cope with constantly feeling so useless and the stress that not doing the right thing is having on me and the quite serious effect that the stress is subsequently having on my health. At the moment, the only reason I'm really carrying on is because I'm on a scholarship and if I left I would have to pay it all back (and that would leave me in debt for years).

 

I'm going to see my GP tomorrow as I'm feeling so unwell as a result of this, but I just don't know what to do and can't see any resolve. I have none of the support I should have (7 hrs/week 1-1) and part of this support is supposed to help me with interpretation of tasks. I just want to curl up under a blanket with my teddy-bear and block out everything. :tearful:

 

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((mumble)) hugs

 

is their anyone you could contact reguarding lack of support etc? even if it was possible to e-mail them and explain what difficulties you are having.

 

good luck with the Dr tomorrow.

 

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Reading through your posts as an outsider, I am always amazed by how hard you have worked to continue with your course and think it a great shame that others can't see it as we can.

 

Is there no way that your tutors, etc could actually give you written instructions as to what is required, perhaps via email, to prevent any omissions or ambiguities? It cannot be beyond the wit of all those brainboxes to find a reliable method of communication surely?

 

I hope you manage to get this sorted.

 

Barefoot

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Mumble I would slap in a complaint to the disability people at your uni because your lecturers are NOT making reasonable adjustments. It is perfectly reasonable for a lecturer to be clear about what he wants of his students especially in the case of a student with an ASD. By them not doing this they are discriminating against you (wether by accident or deliberately it doesnt matter).

 

As you know, you are capable of doing WHATS ASKED OF YOU. if they dont ask directly then it wont get done. If theyve had proper briefings from the disability people about your needs then they would know that "inference" "unwritten rules" etc are not obvious to you

 

Mumble you CAN complete this course with the support you are ENTITLED to!!! The support is supposed to redress the balance so your in effect on equal standing with other students regardless of your disability.

 

It sounds like you seriously need an advocate of some form to talk on your behalf and make sure the uni understand your needs.

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Do you have written details of the support you are supposed to receive?

 

If you do, can you write your own report showing how this isn't happening/detailing dates and examples, etc?

 

Not sure what else to suggest, as I think you have said in the past you don't want to involve the Disability Rights Commission (well, its replacement, can't remember the name, sorry).

 

I have just requested a 'reasonable adjustment' for something at work for the first time myself...so I'm waiting to see what happens! :ph34r:

 

Good luck >:D<<'>

 

Bidx

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Is there no way that your tutors, etc could actually give you written instructions as to what is required, perhaps via email, to prevent any omissions or ambiguities?

This is what is supposed to happen - it's written into my assessment of needs report that I need this - and I'm supposed to get 1-1 support to help where issues do crop up, plus email support so I can say "I'm not clear about... could you explain it please" but I'm getting nothing, I've lost what I did have and I don't even have any confidential email backup so I can say "help" or "I don't understand" or whatever as I've been told I have to copy all emails to another member of staff, and it's someone who really doesn't get ASDs, so even that tiny bit of support has gone. The university know that I have no-one to fight for me and that I would never be up to taking them on myself.

 

I've fought and fought for my needs assessment to be implemented (and unlike so much, this is not a funding issue but a willingness to do issue - the money is there), for my needs to be understood, to be treated fairly with my disability recognised. The fighting has taken my time away from my study when I already felt I had to work 12 hour days to keep up and it's previously pushed me over the edge. I can feel the same feelings building up again and I'm terrified of the potential consequences - I want to live. I'm trying to write a letter to give to my GP tomorrow to explain how I'm feeling and it's upsetting me so much because I don't want to admit these feelings and that I'm failing again.

 

I'm so terrified of the future and of failing but I have no one I can talk to. I feel that I've been let down, but I've tried to explain this and they manage to turn it around - I haven't been proactive enough, I need to try harder (I'm already driving myself to breaking point, I don't know how I can try harder) - and I just feel like such a failure, like I was always told I would be, for not coping. My parents said I shouldn't have been born and that I don't deserve to live and they're right. I try so hard to do the right thing and to make some useful contribution to society and I can't - the simplest things floor me and I'm left as a gibbering wreck whilst everyone else just manages and gets on with life. I don't have the strength to fight and I don't have the strength to carry on without the fight happening that I can't make happen. I'm left drifting with everything seeming so meaningless. It meant so much to me to get on this course, to get my scholarship, I really felt that I was breaking away from my past and that all my efforts were finally coming to something and now they're not and I'm going to be even more of a failure than I was to start out with. I wish I'd never tried to prove myself and just accepted that I really am a nobody and that I just take up space in my uni that could be filled by someone who could actually be successful.

 

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I try so hard to do the right thing and to make some useful contribution to society and I can't - the simplest things floor me and I'm left as a gibbering wreck whilst everyone else just manages and gets on with life.

 

Oh Mumble, this is how I've felt all my life too :(>:D<<'> >:D<<'> :tearful:

 

Emails: why do you feel you can't email for clarification even if it does have to be copied to this other staff member? Does it matter if she doesn't understand ASD if you are asking for clarification of academic work? >:D<<'>

 

All I can say Mumble is we have to plod on, even through the darkest times >:D<<'> >:D<<'>

 

Bidx

 

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Hiya >:D<<'>

 

I'll speak to you offline in a sec, but just wanted to post in public incase it helps a weeny bit >:D<<'>

 

You are most definately NOT a failure >:D<<'> , you have thus far achieved more in your life than many people achieve in the whole of their lifetimes. You've overcome a great number of obstacles and difficulties - most of which come from outside sources and usually instigated by other peoples ignorance and stupidity - NOT yours.

 

Your parents were very very wrong to tell you they wished you'd never been born, and an unfortunate consequence of that sort of parenting is that kids grow into adults who end up with that horrible negative thought in the very back of their mind - it then comes to the forefront when things are really tough and you're struggling to cope - same as we all have some negative thoughts about ourseves from time to time.

 

You most definately SHOULD have been born, and the world is a much more interesting and good place to be with you in it, and you definately have a huge amount yet to contribute, and i know you'll get there >:D<<'> no matter how many tossy profs etc you have the misfortune to meet along the way.

 

Uni have not made any accomodations for AS, and they still do not seem to understand that things need to be properly explained - it's because they can't be bothered to take enough time that you end up not seeing or 'missing' cues - thats not something you should feel stupid etc about - that is UNI's fault and not yours.

 

By all means tell them to shove something.....but preferebly something sharp where it will hurt them! :whistle: but NOT you giving up yr course. It is their fault things are currently so difficult, and not something you have failed at >:D<<'>

 

Try and remember you have some good people who are on yr side outside of the UNI you are currently in - they have faith in your ability and there will be other paths for you to follow when you get away from the uni from hell.

 

Don't be afraid to speak to your doctor, feeling anxious and upset etc is not something to be scared to admit - it doesnt mean you'll end up in that very dark place again, just that you are aknowledging how you currently feel and asking for help to get through it. It does not mean you have failed at all.

 

You can get though this, and I'll help all I can >:D<<'> >:D<<'>

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You are not useless. The university are useless but you certainly aren't.

 

As Lisa says, you deal with so much, have dealt with so much but still you keep going and that's the measure of you - you don't give up despite the fact that the university are seemingly unable to grasp even basic concepts.

 

Your parents were totally wrong to say that you shouldn't have been born as you're a funny, smart, amazing person who touches many peoples lives in such a positive way. You deserve to live because you're doing something with your life and not just sitting back. You're out there living life, doing things, facing the world and refusing to let the obstacles that have been put in your way stop you from achieving what you want to achieve.

 

You live in one of the busiest cities on Earth, deal with so many things that are above and beyond what most other people know, look after yourself and study for a PhD. That's an amazing achievement for anyone, never mind someone who has the extra hurdle of AS being put in their way. Other people 'cope' because they don't have the difficulties that you have. How many of them would simply give up at the first thing that comes along?

 

You are an inspiration for so many people and you're living proof that being AS is not a barrier to achieving things and making your mark on the world.

 

Ask the GP for help - it's not a sign of weakness or 'giving up'. If anything it shows that you've learned, are able to recognise 'the signs' and are asking for help sooner rather than later. That's what smart people do, learn from their experiences. What's more baffling is how an institution such as a university can be full of 'smart' people who are so seemingly stupid.

 

Don't give up - I know how much that course means to you and I refuse to accept that you'd let other people decide what you can and can't do. Grit your teeth, curl up in a ball, ask for help, shout, kick, scream and do whatever it takes but don't ever give up. At the moment it sounds as though you need time to recouperate and get help...so that's what you do.

 

There are people who care about you, are really glad that you were born, and will do everything they can to help. :)

Edited by TheNeil

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Hi Mumble>:D< >:D<<'> >:D<<'>

 

Some PhD supervision sessions are horrible!

 

I don't have an ASD but am the parent of a 12 year old girl with Asperger syndrome. However I do know a lot about post graduate study as I am a PhD student myself am am just taking a little breather after a 3 hour supervision session.

 

I would say that you need to think about what parts of your experience is just down to the problems of postgraduate study and which problems are those where you need extra support?

 

There are some othings that you are experiencing is part of the normal research process - it has very many ups and downs and lows can be really bad:

- I have also thought about quitting - some weeks it all seems to be going well whereas others I get a terrible sinking feeling that I have no idea what I am talking about and that my PhD project won't work

- one of my experiences is as an NT person is that many supervisors are not clear what the want - I am coming to the conclusion that they don't know until you write something and then they decide it's not what they want.

Yes everyone tells me that this is normal for PhDs - even though I oo often feel as though I am failing

 

I was so sad to read your negative feelings - of course you are not a failure and of course you should have been born. You have got further in your field of study than 99% of the UK population by doing a PhD - so I would say this is certainly a success. However I think that it is very easy to lose sight of how far you have come when you work where criticism is a daily event - where no paper can ever be perfect, where there is always something that needs to be better and where even if you developed a world famous theory taught accross the world - there would always be some one with an opposing idea who would criticize you. I would go as far as saying that it is precisly BECAUSE you are so successful that you are having troubles at the moment. Your tutors are seing you as bright and successful but because of their lack of understanding of AS they are puzzled that you don't pick up on the implicit in what they say - even though they don't make it explicitly clear. Has your tutor actually said that he/she thinks you are failing? As there are some who are very tough on their students even if they think the overall PhD is on track.

 

I have a friend here at the department: it took her 4 years to write her final PhD chapter as she sank into a deep clinical depression as a result of the (constructively meant) criticisms she received. She beleived that she would never finish and that she was just not good enough - but eventually with support and treatment she did. I am really worried that your negative feelings might be a sign of getting depressed.

 

However one of my supervisors had been on a "good practice for PhD supervisors course" and one of the things that she implemented as a result was that there should be minutes and an action plan produced at each supervision session (actually this is what I'm supposed to doing now :) ). In my case I produce it I write up a list of:

- summary of the discussion

- what we have agreed I should do

- a plan of what I should work on/alter and how

Then I send it to both tutors to read - and they are contact me if I have missed or misunderstood something. Could something like this work for you?

 

Does your department have a policy of allowing more than one tutor for PhD students? Sometimes having more than one perception can be useful. In some departments up to 3 are allowed. Many people have unnofficial tutors who read and comment on their stuff. Is there a possibility of requesting extra supervision support. If it is now working between you and you current tutor - is there a possibility of changing? At the end of the day it is your thesis - does it matter if the tutor does not like what you've done as long as YOU like it? I had a another grad student friend who had a huge conflict with his tutor about a specific chapter of the thesis - the student liked it and the tutor did not. The conflict increased to the stage where the tutor threatened to resign as tutor if this chapter was included in the PhD!!! But the student thought his chapter was good - So in the end the student got his chapter and PHD but completed his PhD with another tutor as the 1st resigned!!

 

I don't understand why you can't have e-mail clarification - what would happen if you didn't copy your e-mails to the other staff member?

 

I was wondering whether there was anyone apart from your tutor who could give you more support - is there a director of post graduate studies or student health?

 

I think that the department should be hanging their heads in shame for not giving you support. I would ask for a review of you "support" so that you can air these problems and get what you are entitled to.

 

 

I hope that you get some support from your GP - and please don't give up.

 

 

PS feel free to PM me

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Thank you all for your support. I'm not coping and it's a one day at a time thing. I did see my GP but found it very difficult to communicate how I was feeling - I know she was trying to be helpful in noting the positives, but when you feel so low these don't feel 'true' even if you know they are - does that make sense. I left more confused than I went (I think because I normally have a very good relationship with my GP and just wanted her to 'fix' things when of course there is no quick fix), and made it, ooh, about ten feet out of the door before collapsing in full blown meltdown - that hasn't happened for a while and it took me as much by surprise (normally I can sense it coming on and get to a 'safe' place) as it did the poor students walking past me (oh, yeah, if you're reading this - thanks to the student who stepped over me... :wallbash:). Ended up back at the surgery (well, thinking positively, they know it's effecting me a fair amount now...) and I have a huge golf ball sized lump on my head and a bruised forehead as my head obviously decided that hitting itself against the metal pipework was a really good idea.. :huh:

 

Puffin - thanks for your reply - again it makes sense but I'm finding it very hard to think rationally. I know that there are issues that might be issues for all grad students but that are intensified by aspects of my AS and I find it so frustrating when I get the 'well all students find it difficult' line. I know all students find it difficult but I'm trying to communicate specific areas that I need support because I find them more difficult.

 

I have a very clear report that I worked through with my needs assessor that details the specific areas (really really specific and clearly written) where I need support over and above that of another student and the potential consequences of not having that support - including depression and isolation which is where I am now.

 

I do write minutes of each meeting and send them to my supervisor, but these are written in the language used - the problem is coming because I am interpreting that literally and doing what it says and my supervisor is reading it as he/an NT would read it so neither of us sees a problem with the written task until I do the 'wrong' thing. I need him to recognise that I will take it exactly as it says and even if it seems clear to him, it might not be to me. Either he needs to do that, or need a mentor (as I'm supposed to have) to read the task and reinterpret it for me. I've tried rephrasing the task to my supervisor at the end of our meetings to make sure I'm clear but he's obviously putting the between the line stuff in (possibly without realising) and saying yes, do that, so I do that and it's not right because I haven't picked up on the unwritten.

 

An additional problem I'm having is that I don't even know if I'm on track or not - I've asked for an outline timetable to completion several times and am just fobbed off with "we'll think about that later". I was off sick (I was in hospital repeatedly and unable to work on my PhD) for most of last term, I've been told I 'should' be able to get an extension but have had nothing in writing so I don't even know when my completion date is or if I have funding and hence I can't tell if I've made enough progress. As well as the problems with not knowing what's happening (not good for an AS person) I have no security over my accommodation as the accommodation office need my extension in writing before they can process anything.

 

I do have a second supervisor - he might recognise me if he walked past me in the corridor - but that's about it - he knows nothing about my work. I have asked for someone else even if as an addition so I can check my understanding, but as yet nothing's come of that request.

 

I'm just so frustrated because I have a really specific report detailing exactly what I need and I truly believe that so many of the issues I've faced wouldn't be issues at all if I had that support, I have extensive funding in place to pay for that support, but the university have been unable to find anyone to do it. I've asked for and attended countless meetings to try to get things moving and have reasonable adjustments put in place and I am now physically and mentally worn out and I need someone to almost take over those fights for me so that I can focus on my work. It really hasn't helped with the supervisor/student relationship and I'm so cross that everything's got muddled up. I wish my supervisor could concentrate on supervising me and that the disability office would put the support in place so issues could be addressed and everyone could just do what they are there to do.

 

The GP/health centre have been fantastic (I'm going back tomorrow as they want to keep a close eye on me) but I don't want to over-burden them - it's not their responsibility and they're now picking up the pieces (almost literally) after things have fallen apart.

 

I want a review of my support - well actually I want action not just more 'discussion', but I have no idea who else I can approach. I've tried everyone and nothing's happening.

 

Email clarification - I don't know what would happen if I didn't copy than to others but I've been told I have to so I can't find out. I can't even email to ask if I can miss people out because I would have to copy that email to the people I don't want involved in something that should be confidential. This other person has got angry with me before over aspects of my behaviour directly linked to my ASD and over which I have no control. He's never sought to help me understand him and been annoyed when I have completely failed to grasp any sense of what he's talking about from his metaphorical laden speech (he's know in the department for his speaking in metaphors). I am not going to copy emails to him explaining that I don't understand something as he will at best find it amusing and I don't think my ASD should be a source of amusement to others.

 

one of my supervisors had been on a "good practice for PhD supervisors course"

Where do I sign mine up? :whistle:

 

 

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poor you!

 

it seems as though everything is a fight for you at the moment.

 

one good thing is that the GP is trying to help.

 

The GP/health centre have been fantastic (I'm going back tomorrow as they want to keep a close eye on me) but I don't want to over-burden them - it's not their responsibility and they're now picking up the pieces (almost literally) after things have fallen apart
.

 

 

You are not a burden, the situation is not their fault, but it is their job to look after your health. It is great that they are being so supportive.

 

Hope that things improve soon.

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Was noseying around the web when came across this and wondered if they could help with liaising with uni staff at all?

 

 

Support for students with Asperger's syndrome in the UK

 

"Student support is a new initiative aimed at providing specialist support and guidance to students with Asperger syndrome and their place of learning. Advice and information is given by our consultants in helping to develop an understanding of the difficulties people with Asperger syndrome may face with regards to their studies. We also work on a one to one basis with the student and liase with staff and peers. Help is also given in setting up support networks such as mentors and providing effective strategies to aid independent learning. The support and advice is provided by Prospects, part of the National Autistic Society. For further information contact Judith Kerem, Work Preparation Team Leader, Prospects, 8 The Ivories, 6-8 Northampton Street, London N1 2HY.

 

Office Number 0207 704 7450

 

Work mobile 07795667749

 

Fax 0207 359 9440

 

E-mail judith.kerem@nas.org.uk"

 

 

 

 

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This link of Barefoot's looks interesting...is it any good, Mumbley?

Whoops, I forgot to reply, head's not thinking clearly - I'll PM you and Barefoot.

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I came across this site that might be of use to you, Mumble. (Or anyone else who's on the spectrum and is studying...)

I haven't any experience of this organisation, but thought it might be of interest, nevertheless.

 

http://www.skill.org.uk/index.aspx

 

 

 

And for what its worth, I'm glad I can say I've met you, albeit online. I'm so sorry things are so tough for you right now, you have done so well to get to where you are-try not to forget that you have the admiration of many members here. Its not fair that your needs are not being met at Uni....I hope things change for the better soon, Mumble.

 

>:D<<'>

 

Esther x

Edited by pookie170

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Hi,

 

I hope things inprove for you soon. You are an amazing person and what you have achieved is awsome. I have nothing but admiration for you. I do not know what I can say that has not already been said.

 

So her are some >:D<<'> >:D< >:D<<'> >:D< >:D<<'> I would just like you to know I am thinking of you.

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I really don't know what to do, I can't stop crying and I'm so tense my body aches all over.

 

I really enjoy my course, my research topic and I want to be successful to prove to myself that I can achieve after all the negative comments I've received throughout my childhood and education and also to prove to the 'establishment' that disability isn't a barrier. But it is.

 

I've just had a meeting with my supervisor (who knows about my ASD dx) - I went in really pleased with the progress I've made and the work I'd done. 15 minutes later I was in tears having been told off for not doing what I was supposed to do - it wasn't something I was told I had to do (I had followed the directions explicitly) but apparently I was supposed to infer that it was required - and of course I didn't. This isn't the first time this has happened and it seems to become more regular as the demands of the course intensify. I'm missing work, opportunities, expectations, all because I'm not picking up on the clues - the between the lines stuff and then it's seen as me not making the effort - when that is so far from the truth - if I knew I had to do these things, if they were made explicit to me, I would do them (and they are all things I can do easily which makes it so much more frustrating) and I spend so much time and energy worrying over whether I've done the right thing and interpreted the tasks correctly.

 

I am so close to just turning round to the university and saying "forget it, you win" because I can't cope with constantly feeling so useless and the stress that not doing the right thing is having on me and the quite serious effect that the stress is subsequently having on my health. At the moment, the only reason I'm really carrying on is because I'm on a scholarship and if I left I would have to pay it all back (and that would leave me in debt for years).

 

I'm going to see my GP tomorrow as I'm feeling so unwell as a result of this, but I just don't know what to do and can't see any resolve. I have none of the support I should have (7 hrs/week 1-1) and part of this support is supposed to help me with interpretation of tasks. I just want to curl up under a blanket with my teddy-bear and block out everything. :tearful:

 

I am so glad you were born and are in the world. I would be so proud of you if you were my child. I am going to tell my daughter about this place and about all the brave, lovely people in here like you. Thank you for sharing your experience. You have every right to feel bad with such poor support, you are right they are wrong. I can see that others have given you some good advice so good luck.

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Hi Mumble

 

I never went to Uni. I started doing Biology A-level but had eye trouble and had to give up, but to be honest by then I had already realised there was far more work involved than I had thought! You are amazing doing what you are doing. :notworthy::notworthy::notworthy: They should be doing much more to help you, after all it's not much to ask to have written instructions of what work is required.

 

My son got very behind with his coursework in his first year of GCSEs because he was just given it and left to it. He didn't know which was most important/urgent to do, so he did what he wanted to do first and then found he had got really behind with the stuff that should have been done first! A bit of help with organisation and planning should not be an impossible request to a teacher/tutor, but alas often it does seem to be.

 

I would think that you should be able to get extra time to produce coursework (if you know you have to do it of course !!). Is there an advocacy service in your area? Our local one is called Speakeasy Advocacy and they help people on the autistic spectrum, and provide a 'voice' for people to help explain and sort things out. I hope there are services like this elsewhere around the country.

 

You have to do what is best for you. If that is giving up the course then do not feel you have failed. You would be making the right decision for your health and wellbeing - and that is the most important thing. If continuing the course is what you really want to do, perhaps you could print out some of your posts about your difficulties at uni and show them to your doctor. They may be able to write to the uni explaining what help you need and that it is important you get this help to keep you well.

 

Thinking of you. >:D<<'> >:D<<'> >:D<<'>

 

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Hi Mumble

 

Sorry at work and only just read your posting. When my son had problems at University we introduced a complaint/problem process which elevated the problem up the mangement scale if it couldn't be solved at the lower level parties. He was also provided with a mentor to help interpret his problems and act as a mediator with the university.

 

The last resort was me meeting with the head of department and I would always argue the universities failure to provide his special needs provisions as potentially causing his failure of the course. This worked and a compromise was usually reached but it was emotionally draining sometimes and individual staff seemed to have separate agendas and didn't seem to care whether he failed or not.

 

I have completed Masters course and so not at your level but for me part of the requirement is that its made difficult to test your resolve as well as the academic challenge so don't give in fight them all the way and explain that because of your AS everything is more demanding and takes longer.

 

Go Mumble go, don't let them win and prove to everyone that you have the talen that is obvious to all of us here on the forum and anyone else that knows you well.

 

Kinda

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The last resort was me meeting with the head of department and I would always argue the universities failure to provide his special needs provisions as potentially causing his failure of the course. This worked and a compromise was usually reached but it was emotionally draining sometimes and individual staff seemed to have separate agendas and didn't seem to care whether he failed or not.

 

Teachers in schools and colleges want their students to get good grades in exams (honestly!) but university lecturers don't and rarely help students that are struggling.

 

I have completed Masters course and so not at your level but for me part of the requirement is that its made difficult to test your resolve as well as the academic challenge so don't give in fight them all the way and explain that because of your AS everything is more demanding and takes longer.

 

You are right in that a degree is designed to test your resolve. If a degree taught the same material to the same level but used a teaching style more similar to that used in a FE college then it wouldn't be a degree. I have mentioned this before.

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