I'm thinking about adding a "disabled students experience" to the wiki.
I'm trying to get together at least four different accounts (covering a range of disabilities or medical conditions). It doesn't have to a work of literary greatness, just an honest account of how you've found your university experiences so far. How the DSA process was for you, any challenges you've faces and obstacles you've overcome. Your highs and lows and whether or not you feel your condition or disability gives you any advantages.
I'll be writing one (epilepsy, bipolar disorder and dyspraxia PDD) but I know there are at least two other students on here who also have dyspraixa and mental health conditions (not sure about epilepsy) and I'd still like to hear from them.
Also, this doesn't need to be restricted to just university students. Experiences in further education may also be useful.
So if you could help them reply here or PM me. Thanks
This is a really good idea, personally i have dyscalculia, it's kinda rare but means i find it really hard to cope with counting, basic maths etc. Which has affected me..naturally, as when i tell people this (especially when doing a science degree and healthcare degree) they assume I'm hopeless and can't cope..when in actual fact the only maths i CAN work with is scientific maths (eg applied!)
Naturally ive not applied through university yet..but just to have teachers and mentors support me in my choices were hard enough, as theres not much help out there for dyscalciliacs, the only help i have recieved has been through my dyslexia and when coping with the maths, it's been through just me..and learning it through my own way, and i have to tell you now..i retook gcse maths twice, and got one mark to pass..and it was the BEST day of my life when i got that C!!
Anyway im happy to discuss about this if it's needed plus dyslexia, when i WAS at university i decided not to claim DSA, and simply spoke to my maths tutors beforehand and explain my situation (they agreed to allow me to have a lower pass mark for the future exams) however i dropped out..so naturally this hasn't been passed on..
18 months: Mild Dev Delay (first steps taken, speech delay)
2 Years: Hypotonia/Inturned femurs Dx (floppy, low toned, feet turn in alot)
2 1/2 : CP queried (wobbly. very wobbly. strange gait)
4 years: "atypical asd" (loads of noises distressed me, I wouldn't 'iniate' play etc)
6 Years: AS queried. Provisional Dx made. (asked too many questions, made mobiles (liked watching them swing!), found it V. hard to tell when someones bored, various specialist subjects, used langauge more than expected, photograpphic long term memory, sociable but 'odd'. Ticked a couple of AS boxes, but not enough.
10 years: PDD-NOS Dx Speech 'Apraxic' (still no TOM..speech odd)
10 1/2 years: Informal Dx of Severe Dyspraxia (co-ordination/spatial awareness poor, bad STM, sensory probs, bad handwriting, slow etc)
16 years: Severe Dyspraxia informally confirmed by OT. Tremor and SPD (SID) diagnosed. (Really sensitive hearing, touch, smell etc, hands shake)
17 Years: Dyspraxia, Mild CP (really bad co-ordination, stumbling) and Non-Degenterive Ataxia (odd gait, poor propioception, balance goes to pot, very wobbly, occassionally signals from the brain 'just don't get there' even though I have the splinter skills where it should) DIAGNOSED YESTURDAY!!
So, I 'have' if you will:
'Ataxic Dyspraxia' including tremor and SPD (sensory processing disorder)
Mild CP
Hypotonia
Inturned Femurs
Nut allergy (carrys epipens)
This is my provisional entry (not particularly well written, it's only a rough draft). I still need to add more to the final paragraph ("what I've discovered" ) but it's pretty much done. Just some cosmetic changes. I may add more about DSA but, then again, I could easily add that into the new DSA article (if I chose to do one).
It is very, very long. I may shorten it but, even if I don't, I really do not expect anyone else to write was as long as this. It only really needs to be three paragraphs (more if you want). My problem is that I'm trying to cover seven years and a hell of a lot has happened.
I have epilepsy (simple partial seizures, started at the age of 13 and diagnosed at 18), bipolar disorder and dyspraxia/pervasive developmental disorder (diagnosed at 22). I suppose you could say my experience at university has been a mixed bag. I’ve certainly had obstacles to overcome and many ups and downs.
My A-levels were a very stressful time indeed. I was the victim of an assault the month before starting my AS levels and I found this difficult to deal with. I plunged into a major depressive episode and, due to this (and the usual stress of A-levels) my “seizures” (remember the epilepsy still wasn’t diagnosed) became even more frequent. I was also taking three essay-heavy subjects (English literature, Theology and, to a lesser extent, geography) and this didn’t help.
I worked my way through my A-levels with little support from school or my family (but, to be fair, even I did fully appreciate how unwell I was so never asked for help). I seriously underperformed in my A-levels. Due to illness my performance in the exams was quite inconsistent. My module grades would usually be high As or C/Ds (those low grades usually in exams taken just after a seizure). I wasn’t really able to get any concessions or special consideration from the exam boards. Few were able to at that time and, besides, I didn’t really have any firm diagnosis.
I finished my A-levels and, in that summer, I was diagnosed with epilepsy and, with medication, my seizures were controlled. A week later it was A-level results day and, rather disappointingly, I only achieved three Bs (the conditional offer, from Durham, was ABB). At first they wouldn’t let me in. I tried to explain my mitigating circumstances and why I had underperformed but it didn’t move them at all. I persisted though and, after speaking to someone more senior, I was told that if I gave the university medical evidence then they will reconsider my application. I went to my GP, got a letter and the university did agree to let me in after all, success!
So here come my first words of advice. First of all, if you are experiencing difficulties during your study (at A-level or university) don’t be afraid to speak up. Fortunately it seems as though exam boards do take mitigating circumstances into account these days and there is a formal system in place. Also, if you think your studies or results will be affected by illness or disability get advice from your school/head of sixth form. It may be worth asking your GP for a letter; just in case it’s needed (you’ll need medical evidence when it comes to applying for DSA anyway). Just be aware that GP’s are entitled to charge. Most will try and by sympathetic and keep the charge down (if they charge at all). Finally, if you are in the same position I was and you fall short of your offer then be persistent and don’t give up. Inform them you do have medical evidence.
So, I took a year out, did some voluntary work and also sought treatment for the depression. I was placed on Citalopram and things did improve. I was eager to start university and a new phase in my life.
Just before I started university I had my needs assessment. It was a private appointment with the one adviser, the director of the disability service, so she was very experienced and fairly knowledgeable. It was fairly informal, relaxed and comfortable. I gave an overview of my condition and then asked what adjustments could be made. I think my adviser suggested more things that I was able to. A number of things were arranged, including money for books and photocopying and a voice recorder for recording lectures. I was also able to meet with the Disabilities service’s IT technician and familiarise myself with the specialist software and equipment the university provides.
I received my report two weeks later and managed to all the adjustments and equipment sorted the month before I started university. I know that some LEA’s aren’t quite as organised and may take longer.
So, I started university and things were going fairly well. I loved the added freedom and intellectual stimulation university provided. The voice recorder was very useful, I was able to record lectures I also became my college’s “students with disabilities” representative. This position involved listening to the concerns of the other disables students in my college, being an advocate and raising their concerns at the weekly meetings. All the college reps would meet each week and try and resolve any difficulties together (such as trying to persuade the university to improve the student union building’s accessibility). IT was a great, worthwhile experience and, if you ever have the chance to do something like that, I can really recommend it.
Unfortunately, in the second half of my first year, things started to do downhill. My mental health started to suffer and I was referred to a psychiatrist. The depression never really left me, not since the assault (now 3 and half years ago) without going into too much detail; I didn’t get the best of treatment there or even a solid diagnosis. As time went by, my physical health started to deteriorate and I started to suffer from chronic fatigue. Even so, I passed that year and proceeded to the next (my third of four years). I don’t know how I really got through that fatigue, it went on for months. Still, I found my departmental staff quite sympathetic and were willing to give extensions of my essays if needed. By the summer, after nine months of fatigue, it gradually started to ease.
So, I got to the third year and, although the fatigue had gone, I was still no closer to receiving an adequate diagnosis. I knew that I definitely did have Asperger’s or dyspraxia (I certainly met the profile and my brother was diagnosed with dyspraxia during his time at uni). So I got fed up with the inadequate treatment I was receiving and, knowing that I wasn’t going to pass my penultimate year at (my motivation and passion had just gone) I went to university for help.
They arranged for me to meet with a private neuropsychologist (I was reimbursed the fee through the access to learning fund). This was a great help. During our first session we discussed my mental health and epilepsy. I was finally given the diagnosis of bipolar (something I suspected) and he also drew the link between this and the assault, all those years ago. During the final two appointments I was assessed for Asperger’s/dyspraxia. I was then diagnosed with a pervasive developmental disorder/dyspraxia.
It was a great relief; I finally had the diagnosis I was looking for and clear recommendations from the psychologist. I could really see a way forward. Unfortunately, this was still a little too late. I still wasn’t well enough to take my penultimate year exams. As a result I was forced to withdraw from a year (stay at home and not attend teaching sessions) but the university agreed that I should take the exams as a first sit the following year.
So I was slightly disappointed about this but, then again, it was the only real option. I was concerned that I wouldn’t feel like I was part of the university anymore and, as a result, feel out of touch. I’ve been able to prevent this by still making trips to the uni library a couple of times a week, or popping into college and spending some time there. Because of this I’ve been able to keep my relationship between the university (including important staff) going. It has also given me time out of studies to think and reflect. I’ve really been able to regain a sense of how I was (before the assault) and can see myself becoming not just the person I used to be, but a new and improved, stronger version. Also, as far as studies go, I’ve started to regain that passion and interest I once had for my subject. I think the counselling I’ve had (provided by the university as, even with a proper diagnosis, I still couldn’t get any on the NHS) helped enormously. I’m now looking forward to passing these exams and entering my final year (meeting a whole new set of friends) then onto my masters.
So, I think there are a few things I’d like people to take from this. First of all, don’t be afraid to ask for help when you need it. Don’t be afraid to speak up and make your voice heard. I spent far too long receiving inadequate care from the NHS. The help and support was there from the university, if only I’d asked. It would have saved a lot of time and anxiety. Universities want to help their students (it’s in their interests, as much as yours).
i think this is a good idea. i will write something later on, if you want. i have been diagnosed as dyspraxic with autistic tendancies. and visual dyslexia/irlen syndrome. will write when i have got some lessons planned.
I will do this later I think. I'm in my third year of FE - do you want stuff about the other 2 years when my visual problems weren't that much of a problem?
Just one little thing, we need to try and avoid using too many abbreviations in this forum and definitely on the wiki.
There are a couple of posts in this thread I can't understand because of the abbreviations.
I know I used LEA (Local Education Authority) and DSA but I will change that in my final draft,
But you do have a point. It needs to as simpistic as possible. Assume that whoever is reading it knows nothing (or very little) about higher education.
Anyway, need to rush. Have a two hour trip to Durham ahead of me, can't be late....
Ive applied to the DSA (months ago) and apparently my LEA have not even got round to it yet, its just been sitting around for months
Been told it will be at least another month until i can access my funding.
River85 - i think im at the same university as you and i have epilepsy.
Dont have time to write an account now but mine with regards to the epilepsy would be pretty much the same as yours.
Mine are fairly common, dyslexia and dyspraxia. I'm willing to write about studying an essay subject (history) with dyslexia if you like? Although I was only diagnosed last year (my second year of uni) so I couldn't advise on the application process.
I am a 3rd year medical student and since Easter of year 1 have been having breathing difficulties which result in shortness of breath after walking a minimal distance and fatigue accompanying it. Despite numerous tests and a stay in hospital, the doctor’s have been unable to give me a diagnosis which makes it very difficult to access any assistance. The idea is to watch and wait at the moment which is extremely frustrating for me and anyone who wants to know how long to expect a student in a wheelchair around the hospital.
For almost 2 years, I kept quiet about my problems at university and ended up failing an assignment purely because I was unable to get to the teaching sessions for it. I had to resit it paying more than £100 to do so. If I had filled in the appropriate forms, I wouldn’t have needed to pay so have learnt to keep the university updated with my condition, continually filling in extenuating circumstances forms and arranging doctors certificates.
In August, I decided I couldn’t cope with struggling to walk round campus, missing numerous lectures and seminars and missing placements as well, so I bought myself a wheelchair. I was under a lot of pressure from the university to take a year out or intercalate and just decided a wheelchair was the only way they would let me stay on the course. I also applied for DSA. About a month after applying for DSA, I received a letter confirming that they’d help which was quite a relief! The needs assessment was set up for 10 days later and would be a home visit to avoid me having to get there to meet with them. It only lasted about an hour but in that time, the guy managed to work out what sort of equipment might help me and anything else that might be useful in order for me to keep studying. 3 weeks after that I received the report through in the post with his recommendations and I am currently waiting for the LEA to confirm that they will provide what he suggested. I have found that DSA is a scheme whereby they actively want to help you, in comparison to DLA where they’ll do anything to stop you getting the money!
At university, I have had to meet with many different people to discuss what could be done to help. The disability coordinator at the university was very helpful, suggesting both the wheelchair and DSA. The medical school advisor arranged for all my placements to be in the local area for the year so they could keep an eye on how things were going and avoid me needing to travel on non-wheelchair accessible buses. More recently, the medical school appointed it’s own disability officer, to make sure that everything on the course was accessible to me and to provide extra support where necessary.
The biggest obstacle so far has been my GP tutor. A failure of communication between him and the medical school meant that when I turned up for my first placement, he was not expecting the chair and the main meeting room, where drug rep lunches were held, was upstairs without a lift to get to it. At the end of my second week there, he told me I had to contact the dean. 2 weeks later, my meeting with the dean informed me that the GP tutor had decided (despite my occupational health clearance) that I was unfit to continue on the course! I was so angry with him and was glad that I could clear things up with ‘the guy at the top.’ Since then, my GP tutor has still been a huge problem. One week, we were spending the morning at opticians – 5 different places were chosen and the group split up so two went to each. 4 of these places were wheelchair accessible. The 5th was not and that was the one he sent me to, and he was well aware that it wasn’t as well. I’m just annoyed that I have to put up with this attitude once a week for the whole year.
I am currently applying for a blue badge and DLA to get some more help as parking at the university is a nightmare! While they eventually gave me a parking permit, the car parks tend to be full by 8.40 so I either need to get there very early or I can’t get to sessions that start later in the day.
Don't be too upset it's last, I'm just putting them up in the order they were completed. I may change the order later (put mine nearer the bottom as I fee it's too long and will put readers off). But, can I just ask, for the title I use peoples user name and their disability/medical condition. Are you OK with being called a "wheelchair user"? If not, just edit it and change it yourself or let me know.
I have anxiety and depression, and would be happy to write about it for the wiki once I've started at university next year and can talk about the support provided, etc.
K9rubys experience: Severe Dyspraxia (Including SPD (SID) and Tremor) and Mild Ataxic Cerebal Palsy, Hypotonia, Inturned Femurs
My parents always knew that I was 'different'. When I was a couple of weeks old I made strange punching movements as though I was angry. I was quite physically delayed- I sat up late, and took my first step at 18 months, I cannot ride a bike, balance for long when I stand up/stand on one leg etc.
When I was 18 months old, whenever I heard a noise such as a vacuum cleaner, hairdryer, bang, babies crying etc, I would get so distressed I would cry for over 2 hours. I also didn't start speaking untill quite late.
When my parents first took this up with the doctor, he reffered us to a consultant that basically told my parents 'There is nothing wrong with her- shes got you wrapped round her little finger'. Both of them became extremely upset.
When I was around 2, I developed extreme sensitivity to certain textures. This is still an issue for me- I cannot bear to wear anything with denim, wool, lace, lots of stitching/seams/labels. I am very fussy when it comes to tempreture and pressure of water as well- when I was younger I would scream if it was too hot/hold, now I can operate the taps myself, so in a way that bit has got a little easier. I also get annoyed if anyone touches/pokes me without warning- the lighter the more annoying. Mild Cerebal palsy queried.
Tactile sensitivity is basically when you have skin that is way, way, way too oversensitive/undersensetive- I have the over version! It is equal to being sunburnt and having some scratch it. Painful? Anoyying? YES!!!
A couple of months later I was reffered to another consultant (Who I still see every year- she is also our countrys goverment expert on neurological conditions).
Later on, I was diagnosed with mild developmental delay, hypotonia (I'm very 'floppy' and get tired easily- Low tone) and inturned femurs (my legs turn in).
When I was 3/4 someone came to observe me at nursery as when I was little my parents were worried that I tended to just watch/play alongniside other kids, rather than join in/iniate play.
I was then statemented because of this + the fact I was hypotonic.
When I was around 6, my school nurse thought I displayed signs of mild aspergers- by this time I was quite socialable- but still a bit, well, odd! (I could talk inccessantly about insects and dogs (still do lol), I would make 'mobiles' as I loved watching them, I had a very wide vocabulary, I kept on asking loads of questions and didn't seem to be able to tell when people were bored) and had a really, really (photographically good) long term memory. I also had (still do) a very, very bad short term memory (don't ever tell me to do more than 2 things in a row- I will forget them :P ). My balance and co-odination/spacial awareness was pants. (nothings improved there!).
When I was around 9, I was diagnosed with PDD-NOS. (This basically means that I showed some signs of AS, but not enough to get a diagnosis).
A little later, I was informally diagnosed by amanda kirby as being severely dyspraxic.
When I was around 10, a neurologist thought my speech sounded very similar to someone with apraxia.
When I was 15/16, I was diagnosed with SPD (A component of my dyspraxia, known as sensory processing disorder) and a tremor. (This explains why my hands shake when I write).
Dyspraxia informally confirmed. OT compared my dyspraxia to someone who had a stroke and if you try and get around places with one eye closed. Certain aspects of my fine motor skills were assessed 10x worse what you would expect in a 12 year old (what would normally take them 20 seconds, I took over 3 minutes to do :O)
When I was 16/17 I was diagnosed with NDD- Neurodevelopmental Disorder.
At 17, nearly 18, I am now officially diagnosed with severe dyspraxia and mild ataxic cerebal palsy + SPD and tremor.
My neurologists basically says I have the 'splinter skills' e.g, kicking a ball (I can look at the ball, I can lift my leg, and touch the ball individually, but I cannot do it all together) so I should be able to do it, but I cant 'link' the movements together.
I also like my enviroment to be predictable- if I don't know what I'm doing for too long, I start to get anxious. I also cannot sleep without my duvvee on me (I need the pressure to get me to sleep) or with the window open (I have hyperacute hearing- I can join in conversations that are 2 storys below/above me :P ) . I also have a very sensitive sense of smell- I cannot stand smoke, I feel like retching when someone does around me. I also can smell my computer, my rug, tv, paper, pens, pencils, bike locks, clothes etc that other people can't seem to.)
I am also very wobbly, have a very poor sense of direction, stumble, fall and crash into things alot :P and use a laptop, seperate room + 25 % extra time in my exams. And if you dare question the validitiy of these, I am very likely to bite your head off. So be careful.
But, having said that, my conditions have gave me some fantastic qualities such as:
- Determination, I will go on, and on until I get something how I like it!
- Motivation
- Perfectionism at school. I get peed off if I recieve anything less than a B. And even if I got that I would be moaning for a A. It can be both a good and a bad thing.
- Creative thinking
- A ability to 'think outside the box'
- Above average IT skills- specialist subjects are useful you see!
- Photographic memory ( I can remember events from 14 years ago in perfect detail)
- My extreme senses come into use. No-one can hide chocolate from me and no-one can exscape from my ears Even if you close the door :P
K9Ruby, it would make it easier to understand and read if you put the full name in the text, followed by the abbreviation in brackets, at least the first time each one is mentioned.
Since the age of at least 5 months, I’ve had problems with my eyes. When I was 3, I was diagnosed with tunnel vision, but they decided later on this wasn’t the case. When I was 4, I was eventually diagnosed with Nystagmus, ( ‘wobbly eyes’ ) Myopia, ( short sighted ) squint ( eyes don‘t look in the same direction ) and light sensitivity.
From the age of about 5-11, I had no problems with reading and writing. After I turned 11, I started having problems reading certain colours and joined up handwriting. Copying from the board was difficult too.
From the age of about 17, I found it hard to read standard (text size 12) but can sometimes read it on a good day, but only for a short while. Reading can be very tiring because of the extra effort needed to scan read.
I’ve never been given the support I needed I school or college. Was promised my own textbook (I can read something when it’s right in front of me) but was never given it.
At college, I was the first person there with Nystagmus (that they know of) so I had to educate them on what exactly it is and what help I need.
From the age of about 7, I started to become really clumsy and got told when I was 18 that I shouldn’t ride a bike for that reason.
I have just been told the cause of my problems is because my brain isn’t wired properly.
Discuss issues affecting disabled students.
Useful Resources:
Students with Disabilities - Experiences
Re: Students with Disabilities - Experiences
