Ds with CFS, Needs assessment for DSA, what might help him?

[northender]

Ds has a needs assessment for DSA tomorrow. His CFS was diagnosed just over a year ago. College arranged extra time and rest breaks for assessments and the A levels that never happened. He struggles to concentrate for long periods, particularly with uni being mainly online at the moment. He gets "brain fog" and finds it hard putting his thoughts down on paper quickly enough. I'm new to all this and just wondered what things others have found beneficial. He is hoping to be approved for a newer lightweight laptop but not sure what other things would be useful. Just don't want him to miss out at this stage.

Additional tutor meetings to go over anything he’s struggling with? Voice to text software. Breaks in exams. If appropriate, additional consideration in timetabling so he doesn’t have to go back and forth across campus.

I've had CFS since I was 13 (now 36) so if you have any questions, I'm your gal.

He needs a LOT of sleep at night. 10+ hours if possible. Plenty of rest breaks (not too long each time) and plenty of vitamin C. I find Berocca helps when concentration & energy is paramount for something I have to do. Don't have it every day though and obviously be careful not to overdo the Vit C.

I'm typing this whilst fighting an almost overwhelming urge to lie down. I spend my 'bad days' laid down whilst doing whatever I can do whilst in that position (emails, bill paying, planning etc). It really helps.

When it comes to getting stuff done, I have to compartmentalize each task and have a lay down in between each short stint.

Most importantly, I can't stress enough how much he MUST NOT do too much on the good days - seriously. Even after 23 years, I still haven't mastered the art of knowing when to stop, in order to avoid suffering the next day and in most cases, that evening. It hits you like a truck.

Check and see if your local NHS trust have their own Chronic Fatigue Services Unit. Mine do and they're absolutely invaluable when it comes to support, information on understanding how your body is working and why, pain management and most importantly fatigue management. They taught me when I was 18, that my body is permanently in survival mode (be prepared for weight gain. Sadly, it's almost inevitable) and explained how this affects me.

I did however, manage to go on a University course one evening a week and get an A-Level equivalent qualification and go on to work in that field for a while, with the support of my employer. I worked part time and received partial sickness benefits via the Therapeutic Earnings scheme.
Obviously the severity of CFS is different for everyone. Your son may go on to overcome his symptoms and head off to Uni/have a perfectly ordinary work life. I have it particularly bad whereas some don't.
I will say also, the first few years are the worst. Then you reach a kind of plateau and then you usually find your balance :)
I had a period of over 10 years where it barely affected me at all, as long as I didn't over for it. It's only now that I'm older that it's starting to gain a slight lead!

Best of luck and like I said, I'm happy to answer any questions :)

Thanks both. Always that's really helpful. I don't think he has been as severely affected as you and am hopeful he will improve, but realistic enough to know this could always be with him in some form. The consultant who diagnosed him recommended berocca & other supplements, but he has lapsed with them so I will get back on with that. He has registered with Uni for learning support so I hope they will sort out the rest breaks and extra time in exams as it really helped at college.
I think the voice to text software would be helpful too. Pasta the timetabling won't be a problem at the moment as almost everything is online, but worth thinking about when normality resumes at some point!
He is on with the local CFS service which was reinstated just before he was diagnosed so we have been very lucky with that. His physio has been great

Hello I hope the assessment goes well tomorrow. In my experience the assessors are good at suggesting things that might help.

I have two dcs at university both with disabilities. Although neither have CFS they do have conditions which cause pain, fatigue and difficulties with concentration over long periods.

Things they have had through DSA which have helped to varying degrees are:

suitable laptops

ergnomic equipment to use the laptop (stands, adapted key board, adapted mouse, wrist rests) which all reduce the fatigue involved in typing

suitable bag to take equipment around campus

software (speech to text, text readers, programmes to help with note taking and structuring essays)

small recorder to record lectures so they don't need to take notes - obviously not necessary when lectures are online but useful once things are live again.

a printer and paper/ink allowance to make it easier to print off or photocopy study material

taxi fares to and from classes if public transport is difficult (obviously once face to face teaching resumes)

an ergonomic study chair which reduces pain and fatigue from sitting.

a mentor to discuss how they are coping and to help with structuring work

They also have exam arrangements. The DSA assessment can make recommendations but the university needs to make the actual arrangements. These can be extra time, rest breaks, small room, taking something to eat into the exam (with rest breaks and extra time exams can get long)

DSA will send his assessment to Disability Services at the university but it is essential that he makes contact with them himself for exam arrangements, so that they can liaise with his department if necessary and to make any physical access arrangements once he is back to face to face teaching.

Is he planning to live at home the whole time?
If not there are also adjustments that can be made to university accommodation.

I hope that is helpful. I would be pleased to answer any further questions if I can.

Just a last bit from me - as you’ve mentioned not all elements suggested in this thread will be appropriate for right now because of the COVID situation, but you and your son should push for the DSA assessment to cover all scenarios. So what does he need right now specific to the online situation AND what does he need when things are back to normal. You can be reassessed but it takes a while and it’s best to have all the support possible available from day 1, even if he doesn’t take all of it up, or take it up right now

Current student with a fatigue problem the most helpful thing I get from Das is the funding for a specialist mentor he has helped me lods with reminding me things like my Health is more important and checking in that my work lode is not to much and advising me to go part time as well as taking thru some of my work with me ( I developed the problem at uni I got the support I get is off the back off over diagnosis I have but a specialist mentor is awdord to a wide range of diagnosis I Believe) when and if in person lecture/stuff resume a dictaphone and possibly the note capture software ( this lets you link slide from a PowerPoint to chunks of audio and tiped notes together) will be good I have sat in and sometimes outside of lectures and can not tell you what was going on as I was too out of it and my note takers notes are all I have
( I have the note taker because of something else)

What can I say? Thank you all so much for your responses, it's exactly what I was hoping for...and more. I will have another read through later & then come back with some questions.

I'm just having another read through your responses ahead of his assessment this afternoon. It was postponed last Monday as the assessor was ill. Thanks again, I'll let you know how it goes.

I had DSA for CFS when I was at university. When I had my assessment they were great - really thorough! I was given a laptop with all the software I would need and printer supplies so I could work from home when needed. Also ergonomic mouse, desk and chair etc.
In addition I had a recorder for lectures as well as having extra time given for assignments and exams.
And finally we had a seperate library section for disabled students with 24 hour access.

I would recommend that your son also has a chat with the disability coordinator for his department - they provide an insight into how adjustments can be made for him on his particular course.

also assignment allowances - DD got a two week automatic extension on all submissions (although a friend in a different department had to request each time). She also had exam allowances - she could decide up till the minute the exam finished that she could resit, but as a first sit (so grades not capped at 40%), partly because of the brain fog, and partly because of another symptom.

Also being able to sit down while giving presentations if needed, again not so important during covid, but could be needed when/if things go back to in-person.

Thank you for all the comments, it helped me to feel much better prepared. Ds spoke really well, the assessor was lovely & he is getting a laptop preloaded with useful software, a printer and has the possibility of a mentor but will have to apply with another condition for that. He's not keen on that idea, but we'll see.

Sorry if someone has already mentioned this but you can go back to them and ask for other things that you need at a later date if necessary. One thing that I don't think anyone mentioned that they often include is insurance for the laptop - they are keen to make sure that your studies wouldn't be disrupted should your laptop break or get lost/stolen etc.