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do I step in or leave ds to it?

(65 Posts)
sisyphusisalive Wed 22-Jan-14 14:36:27

ds1 is having mh issues and last week the GP told him he has anxiety and paranoia issues and prescribed ad. he thinks (and I sort of agree) it may be related to autism and she told him it was very hard to get an adult dx but would find out. His db has severe autism and these issues are more like ocd/anxiety/panic or poss ptsd

last week (before he saw the GP) he rang crying as he was in the middle of what I interpreted as a panic attack - he was standing on the street unable to move and petrified not knowing what was happening to him

he told me he had been self harming and when on the tube wondered what it would be like to jump on the tracks though he didn't think he'd ever do it. he has missed some lectures and said we might get a letter home

I managed to talk him through going to the walk in centre by the uni but when he went in he came straight out and rang me crying again because he said everyone was looking at him. I then persuaded him to go up to the student services to see the counsellors there but when he went he just stood at the door unable to go in as he could see lots of people in there. that's when I rang his GP and got him an emergency appt when she gave him ad

I am trying to persuade him to let uni know he is having mh issues so that they can either support him or at least bear it in mind should his absenteeism get worse or he walks out of an exam with no explanation but he's too scared to email or go to see them because they will want to talk to him and he finds it too intimidating

Should I email his tutor or the disability department? I know he is over 18 and so it has nothing to do with me but I want to help him as he doesn't seem to be in a position to do it himself. He has said he doesn't mind but he won't talk to anyone from uni about it and I'm reluctant to be seen as a parent interfering

Sorry its long

MariscallRoad Wed 26-Feb-14 14:41:30

son sees mentor once a week. he is important for many functions and helps son organise many things. They are trained and great support. Grateful they are in place. Encourage son to apply to get a mentor asap. smile

sisyphusisalive Wed 26-Feb-14 12:18:09

Thanks for the replies. Ds has officially registered with the disability support unit now (albeit by email) and they want to see him face to face before March 20th as that seems to be a deadline relating to exams.

His ad medication is having no effect and he has stopped taking it. I have told him that is very unwise and potentially dangerous so I am going to his next GP appt with him as he has said he sometimes can't articulate to her how he is feeling and I don't trust him to tell her he's stopped the tablets. I will ask her to write to the uni if she hasn't already done so. The uni sent him the forms for dsa but he is reluctant to fill them in as it involves seeing someone face to face. Not sure why he would be entitled to any extra money though, his prescriptions are free as he's living off a full student loan. In the meantime he is on the waiting list for CBT at Guys.

I think it has come to the point where I just have to take the reigns, make the appointment with the disability unit on his behalf (if they let me) and take him there myself although I risk going all the way to London to sit in front of someone with a ds who remains mute. My only hope is to have prepped them first. In the back of my mind too though is the thought that it sends him into meltdown and he ends up gnawing his arm again.

Re the feedback - what upthechimney said about DH Lawrence makes a lot of sense and I will pass that on to ds. He is quite buoyant at the moment so I am going to seize on that positivity and draft an email for him to send to the tutor asking for a feedback tutorial appointment and explaining why he has not collected his work since before Christmas.

Can anyone tell me what a learning mentor's role is? I need to have an idea of what type of support he should be asking for at the meeting.

UptheChimney Wed 26-Feb-14 09:04:19

The real crux of the OP's issue is that eventually her DS will need to disclose to the University, and probably have a face to face discussion with the student disability support people. Until he can do that (with or without the OP's support), academic staff and administrative support staff really cannot do anything officially. And while academic staff can be sympathetic, it would be inappropriate to act on our own judgement of the case.

I've recently seen a personal tutee of mine for a progress supervision. I first saw him almost a year ago, when I suggested that he may have a specific learning disability, and that he needed to go & get himself tested. He did, and yes, I was right. I could have been wrong, however. And until it's all signed & sealed with an official indication of how we now assess this student's work, we can't change anything.

So my recent conversation with this student was explaining the mitigation process, in which students can make a retrospective claim for adjustment, particularly if results are on a borderline number, that is, between class marks (eg 59%).

So OP, your DS may still be able to have learning or other disabilities taken into account for past work. But -- and you know this, it must be so frustrating -- he needs to disclose & submit expert ed. psych. and other specialists' diagnoses.

MariscallRoad Wed 26-Feb-14 08:51:39

I agree with Shoot when the DC has a condition parent needs to help. I do the same. There is no substitute for a parent. Several other conditions can also produce panic attacks. I have given up a lot of my time to help ds.

I have seen several feedbacks on academic work of students before their diagnosis of a med problem and afterwards. For a feedback to be of benefit l feel it depends on whether the student has disclosed his problem and the tutor knows the difficulties. I had taught in US Unis. Students informed me of their problems so I had to take this into account in my feedback.

I understand the concerns of your son. Some unis in UK - i experienced this - have a policy 'fit to sit’ but can take account of undisclosed extenuating circumstances even after the exams.

UptheChimney Wed 26-Feb-14 07:12:02

I don't know how these things work but would there be any negative repercussions if he left the feedback unfed?

Short answer: no.

Longer answer: like PenelopePipPop, I find it extraordinarily frustrating that the lengthy time taken to write constructive & helpful feedback goes to waste.

Students fixate on the number/mark/grade, which is frankly the least useful thing, and which I don't actually count as "feedback" -- it is simply the number.

And as someone said on this thread ages ago, sometimes we do less well when discussing "favourite" books or authors. I really dislike the fiction of D. H. Lawrence but if I have to teach his work, I give brilliant classes. I find other far more congenial authors harder to teach because I don't have such easy access to an analytical point of view. Studying/professing literature isn't about "Oh I love this book." That's for book groups ...

When we give essays back at my place, students have to sign up for a 10-15 minute one to one tutorial to discuss feedback -- he could ask for that via email maybe? His tutor is unlikely to want to mention the mark, but will want to go over ways he can improve his writing.

But honestly -- I really wonder if he's ready to cope with university. It gets much tougher ion second year -- NT students find that, so for someone who's NAT, it's likely to be really tough, until he has support in place and has started to learn (be coached?) in coping strategies.

MariscallRoad Wed 26-Feb-14 01:30:05

Sisy my son has a number of disabilities . He has great anxiety too. This is common. He is kept awake from worry. he missed classes sometimes and projects but this due to extreme fatigue and his condition. He has a mentor in addition to a tutor and such should be provided by the services at the uni. Not all student supports work at the same rate. Not all unis are the same.

You can tick the box any time. It does not matter he is over 18. he needs you. A mentor is very good service to have. Surely he is entitled to dsa which is some help.

I have found very many differences in competence between people who assess disabilities of students.

Now, since the EA 2010 universities are obligated to make reasonable adjustments for students with special needs. This means unis - after the student has disclosed his needs - must anticipate and make those adjustments. This I know from my son’s uni policies. Alternative your son needs to contact his student support service and request help. My son tells me some students have alternative arrangements to exams
It might be a good idea if you speak to the student services yourself because they will know how to help students.

PenelopePipPop Mon 24-Feb-14 18:46:20

This is an amazingly common thing for students to do - loads of research has been done into it because students complain we don't give them enough written feedback on their work but studies have shown that depending on course 10-33% of all written feedback goes uncollected.

I have never heard of a sanction being applied for not collecting feedback. Your son should have a course handbook which clearly specifies any sanctions which would be applied for academic offences like plagiarism etc and I'd be amazed if this was in it - punishing people for being anxious would be a bit counterproductive!

(Usual caveats it would be best if he could get the feedback even if he didn't feel like reading it now etc but you know all that.)

sisyphusisalive Mon 24-Feb-14 18:18:07

Not sure if any of you are still out there but have another question. ds has refused to go to pick up his essay for one of his modules. After getting the 2:2 in one of the other modules he seems to think he is crap at english. The feedback he is waiting for is for one of his favourite authors and so he is worried if he can't get it right on that one, he won't ever pass anything.

I don't know how these things work but would there be any negative repercussions if he left the feedback unfed?

PenelopePipPop Wed 05-Feb-14 19:09:01

It is a relief the Uni are aware and you are seeing to some action Sisyphus. I hope the medication starts to help soon.

creamteas Wed 05-Feb-14 16:32:30

It sounds like things are moving forward, hope it all goes well

sisyphusisalive Wed 05-Feb-14 14:20:54

I had a response from the disability unit and they can support him via email though they said they would need to see him at some point and asked for his mbl number so they could contact him rather than the other way around. He has also had an email back from his tutor though I don't know what she told him but it can only be positive.

He did also say he got an email from someone asking him to fill in some forms so I assume that was the disability unit and he must have given them his name which is a step forward. Filling in the forms himself though he thinks is too much for him at the moment so I told him I would do it with him. At least things are moving in the right direction. The ad medication doesn't seem to be kicking in so that will be the next thing to tackle.

Shootingatpigeons Fri 31-Jan-14 12:54:51

Slow the starting point for DD getting support was the GP writing to the Tutor. She put in place the process for extenuating circumstances to be taken into account and then for a year out to give her the time and space to recover, and DD followed her suggestion to switch to two different modules which she attended uni part time to study in the final term (one of her issues was with two particular courses that she had allowed to over face her when she was feeling vulnerable, and she had not been able to catch up and gain the understanding, she is a Scientist) . They also referred her to a Counsellor for treatment. We only involved the disability people in the context of getting her some better equipment for taking notes in lectures, she is dyslexic, before she went back. She is now doing very well, as I mentioned before.

It was the universities GP practise and it was their Counsellors she was referred to, but I see no reason why the same would not have happened if it had been our GP.

Can you circumvent this non functioning unit?

And please take all the advice, supporting and acting on behalf of a DC with mental illness is not helicopter parenting and no one will think it is. It is right to leave them to fight their own battles but not when they are ill. If he had a serious physical illness you wouldn't think twice. Whilst they may not be able to reply without his permission I am sure his tutor would be grateful for the information they need to make sure he gets the right support.

UptheChimney Wed 29-Jan-14 19:17:44

Some universities also have specialised autism/neuro-atypical support. There can be procedures in place around exams, anxiety, dealing with melt downs, time out, silence etc.

SlowlorisIncognito Wed 29-Jan-14 18:56:28

I hope they get back to you soon. It seems like their disability department is currently struggling a bit, which is not good. If they don't get back to you soon there might be someone within the students union who could help a bit, maybe? Mine has a VP for welfare who would try and help if the disability department were being useless.

Unfortunately it is unlikely he will be allowed to resubmit any coursework unless it is agreed due to extenuating circumstances (and even then it would not usually be the same piece of cw).

WRT exams that number sounds possible. With exams it is more that arrangements like not being able to cope with being in an unfamiliar room with lots of other students (many of whom may be from other courses) and invigilators who he won't know. Some people with anxiety find this very triggering, and are allowed to take their exams in seperate rooms elsewhere in the university. However, this does need to be organised well in advance if at all possible. If it's not something your ds would have a problem with, then hopefully you don't need to worry about these just yet.

creamteas Wed 29-Jan-14 17:56:28

Sorry you are not getting a more immediate response and hope they get back to you soon.

BTW the unistats website is only accurate if there are no options to choose for as the numbers are based on a typical pathway which can vary enormously.

sisyphusisalive Wed 29-Jan-14 16:27:11

ds approved the email and it has gone off. Automatic reply bounced back immediately to say the unit is short staffed, the email might not get a response until the end of January. The suggested alternative is to call in at the office. No telephone option - will keep trying the answerphone. Sods law, but thank God its nearly February. Feel like the first hurdle has been jumped.

sisyphusisalive Wed 29-Jan-14 15:56:10

Today he is much brighter - (he met dh for lunch) Seems much more open re communicating with the disability dept if its all via email so I need to capitalise on his willingness in case he changes his mind again.

Their answerphone however has been on all day. The website says there is a vacancy for senior disability adviser (mental health) but I assume there are other people who would deal with MH issues. There is a contact us form which I have filled out but won't send until ds approves the content.

Yes he has exams in the summer 9 in all I think he said, does that sound right? 3 for 3 modules and one module has no exam ??? He's going to rewrite his 2:2 essay, its the module with no exam. I'm not sure if he is allowed to resubmit but I think it is more about proving to himself that he can do it. According to unistats the course is 38/62 split on exams/coursework for the first year so that may work in his favour as there is less pressure.

Not doing Catch 22 PenelopePipPop I don't know the names of any of the staff and would be reluctant to email a name off the departmental website who may not have a clue who ds is. I think I might be able to get somewhere with the disability unit people though so I'm feeling a lot more hopeful today.

Thanks for all the time you have all taken to post replies - it really is appreciated

creamteas Wed 29-Jan-14 14:17:28

If you left a message the disability unit will hopefully get back to you fairly promptly. If your DS emails them and gives permission, they would be able to meet with you without him if necessary. Not ideal but would be a start.

If you don't hear from them promptly, there is probably an overall Student Support Manager that you could contact.

The system varies from university to university, so where I work, emails to the Head of School would just get bumped onto student support, so that would not make a lot of difference.

SlowlorisIncognito Wed 29-Jan-14 13:28:15

All I can suggest is to keep trying with disability support. They may be quite busy, but hopefully you will get through to someone in the end. If he is unable to speak to them face to face, could he attempt to communicate by email- even just giving them permission to discuss his circumstances with you would probably be helpful. I understand this might be too much for him right now though. Perhaps if he built up a relationship with someone via email, then he might be able to talk to them face to face later?

If he wants to stay at university, then that is fair enough. This may be an option that they offer- but if it's not something he wants, he doesn't have to take it. However, I do think that sadly some students reach a point where they are not well enough to cope with university, even if they desperately want to stay. This does not have to mean dropping out, and there will be options available to him.

However, if he does want to stay, does he have exams in the summer? I am aware this seems a long way off, but if he has any special requirements for sitting the exams then these usually need to be sorted out sooner rather than later.

I really hope you manage to get something sorted, and he is able to get some of the support he needs as soon as possible.

PenelopePipPop Wed 29-Jan-14 12:21:31

They don't need him to say things. He can e-mail disability support if meeting face-to-face is too much. Just as he e-mailed his tutor.

But the needs of people with anxiety are subtle and diverse so we would not make any assumptions about what support would be appropriate without some contact with him. He isn't in a paradox he's in a double bind - if he were well enough to ask for support he probably wouldn't need it. He isn't reading Joseph Heller this term is he!?

So you are trying to break the double bind. He is able to talk to his GP. And he is able to talk to you. So all is not lost. You need someone inside the institution whom he can also talk to who can appreciate the scale of the situation and identify what supports can be put in place to help him. And as everyone said, the university will do a lot once they know what they are dealing with.

So the questions are a) how do you find that person and b) how do you convince your son to talk to that person.

It may take several goes, disability support services may be pro-active once you get through and be willing to approach your son after hearing from you. If they have a good mental health specialist person (we have 2 MH specialists) then this could be a plan.

The personal tutor is an unknown variable but you should keep pushing at that door - as others have said we don't get trained in this. MH happens to be part of my academic field so I tend to follow my students with interest, though I always refer them on to the appropriate specialists. Only disability support and/or the director of undergrad studies can coordinate the adjustments a seriously ill student needs. Has the personal tutor replied to the e-mail your son sent him/her last week yet?

The departmental secretary/most senior admin person responsible for the undergrad programme he is on could also be approached too.

If none of these people are responding helpfully I'd honestly try the Head of Dept just to get things moving. Explain that your son is suffering from severe anxiety, under the care of a GP and you are very worried about his mental state. You appreciate they cannot disclose personal info to you, but you do want to know if disability support services or the dept can make efforts to reach out to him and ensure that he is getting any support/reassurance he needs because he is acutely vulnerable right now.

I know if our HoS got an e-mail like that he'd be straight on it. We do have a duty of care to our students (and also we tend to like them and want them to be happy).

Letters from GP explaining the seriousness of the situation are helpful, but not essential. Any or all of these people should believe you and try to help. The real issue is not whether they should help but whether they can help, because to do that they have to be able to build up a relationship of trust with your son, which right now will be hard.

I do sympathise. It must be so painful trying to support him at arms-length like this. I hope that when the anxiety starts to calm down slightly and he feels less fragile he'll be able to see how worthy he is of help and support.

sisyphusisalive Wed 29-Jan-14 11:36:22

Just listened to the Womans Hour clip thanks UptheChimney I followed the link that they recommended and found the service that he has been referred to for CBT.

Long phone call last night during which he categorically refused to go to the disability unit with or without me as it would involve talking to people and even if I did the talking, they would be looking at him. He realises however that that is what he needs to do but kept talking about everything being a paradox. He didn't mind if I spoke to them to find out how they work and what would typically be on offer so I have tried this morning but its an answerphone so I am going to keep trying.

He got very cross when I suggested time out from uni - his course is everything to him and this term they are covering all his favourite authors. I realise that a degree is not therapy but whilst he is happy to be there (as long as he can fade into the background) I don't think change would be very helpful.

All I can do therefore is find out as much as I can about what is out there for him but at the end of the day, even if I do manage to get him through the door to explain his difficulties, the uni will need him to vocalise something and all the time he won't, there is nothing more I can do.

UptheChimney Wed 29-Jan-14 08:41:18

There was an interesting piece I half caught a bit of in the other room on Woman's Hour yesterday about anxiety. Might be worth iPlayering.

SlowlorisIncognito Tue 28-Jan-14 17:45:09

One member of university staff told me that a student's mother phoned up and asked if it was possible to get an end of term report. That is helicopter parenting.

Universities do make allowances for disability. For example, during the first two years of my degree I worked answering phones/emails in my university's admissions office- this included manning the telephones during clearing. Normally, it is very important for the student to ring themselves during clearing- however some students have disabilities which prevent them from using the phone, and in this case we would sometimes use a parent as an interpreter to arrange a more appropriate method of communication.

If going with your son is what enables him to speak to disability support, then do it. Booking an appointment would be a good idea, especially if you can explain the issues involved, as then you can hopefully see a knowledgable member of staff.

Do you feel your son has deteriorated rappidly? If so, it may be worth trying to arrange extenuating circumstances just for a week or two to see if this helps him become more stable and sort out some support without having other pressures on his time. He won't be the first student to ask for this.

UptheChimney Tue 28-Jan-14 09:58:05

Yeah, I've had those sorts of calls too, chemenger. I did once quite deliberately tell a parent I was about to break the law, and then told him just exactly how his child's behaviour had had a deleterious effect on other students' work.

Good luck, OP. But do think about talking your son through a leave of absence. He sounds too fragile at the moment to deal with ordinary feedback.

chemenger Tue 28-Jan-14 08:32:00

You most definitely are not helicoptering by helping your son get through this. I am always happy to listen to parents, even though they have to understand sometimes I can't really reply. Often it is a relief to get the piece of information that makes the jigsaw of a student's behaviour fall in to place. Parents are usually lovely and sometimes my heart breaks for them trying to help students in horrible situations.

Helicoptering is the mother who phoned me in a towering rage because nobody had given her son a timetable and he did not know where to go (in the second week of his second year). I had to point out he was the only student in our department who had failed to meet with his tutor for a 1 to 1 appointment, which I had sent him a letter about in the summer vacation, that I had repeatedly contacted him to rearrange when he failed to turn up. (I can laugh now, but it was pretty unpleasant having this woman haranguing me down the phone, its not as much fun as you think Penelope!)

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