Student starting HE who have disabilities, additional needs, mental or physical health issues -support thread

[NoHaudinMaWheest]

I find general support threads very useful but there are additional issues when our dcs have needs beyond the standard. I thought that it might be useful to have a place where we can discuss our concerns, pass on tips and information and support each other.

My dd is (results permitting) starting a degree at a university hundreds of miles away. She has mobility and chronic pain of unknown origin, ASD, mild dyslexia and a variety of health problems,
none of them serious but adding to the complexity.
We have had her needs assessment but it has needed some tweaking so isn't finalised yet. She has also done a transition course for students with ASD which has given us a chance to see what the difficulties might be and put some plans in place.
I am still terrified of how she will cope though.

For context I also have ds (ASD, OCD, dyslexia, hypermobility) who has been away at university for two years. He has struggled a bit (a lot at times) but the disability services at his university have been very supportive.
Anyone with dcs already at university or studying themselves are also very welcome. (So that we can pick your brains!)

F

Catblues could he set himself a target of trying to talk to one person? Walking into a kitchen full of people would be intimidating for many teenagers, but if he props his door open, someone walking past might say hello, and then he only has to talk to that one person to start with.

Thanks Thethird - yes I've left him with a doorwedge and suggested he sees if anyone wants to join him on his PS4 as a sort of icebreaker. Just wish I could help him as I can feel his anxiety rising from his texts, wish everything was not so hard for him...he doesn't drink or party either and I don't want him to isolate himself.

I hope things start to feel a bit easier for him soon.

DS1 is going to have to talk to someone tomorrow morning if he wants breakfast - his sense of direction is almost non-existent, so he's going to need to tag along with others if he wants to find his way to the food court again.

Hey all.

I am not a parent, but had severe mental health difficulties - depression, severe social anxiety, eating disorder - throughout uni - as a bit of a summary, dropping out in Freshers' Week after an overdose, returning the next year when I was more ready but experiencing the death of a grandparent in first year and my mum's terminal cancer diagnosis in second year, which basically resulted in absolute crisis for me (police mental health sections and all sorts).

I did well in my degree (and my lovely mummy died the month after I graduated), and started an MSc 2 years later (different university, far smaller and better for my needs), where I was diagnosed with anorexia and spent 5 months in hospital!

I had a lot of difficulties throughout uni, and various support - whether from the uni (student advisor at undergraduate, supervisor and lecturers at MSc) and finding my own strategies to cope.

It may not be useful, but I just wanted to say that if anyone has any questions or would find it helpful to ask anything or hear any experiences from the mental health and university side of things, please do feel free to ask.

Thank you Livness12

Just had a text from DS1 - he has decided not to visit disability services or arrange to meet the specialist mentor - he says he doesn't need it.

I'm just hoping he feels able to access the support when he does need it.

TheThird I am projecting massively here, but how about suggesting to him that he sets up one meeting with the mentor, then asks not to see the mentor again unless one of them has a concern? Is his personal tutor aware that he may need support?

He is planning to contact the personal tutor anyway (his idea) to ask about alternative assessment for one module. 25% of the marks are from an oral presentation made to the class.

I will wait for a few days until the dust settles, then gently suggest he makes contact with disability support and perhaps arranges a trial session with the mentor.

the third sorry to hear that ds isn't taking up his opportunities for support. However if he decides he does need it the fact that it is already in place will make it much easier.

I went to see dd for a couple of days this week and sorted out various admin things. Laundry is still a problem. I had looked into getting a care agency to do it and had actually found one that could. However I don't think it is going to work as there is no way to guarantee that there will be a machine available when they come. There are only 3 machines for 330 students and at least one is usually out of order so it
is just luck or sitting in the laundry room for hours that enables you to get one.
I haver written to accommodation services (with dd's permission) asking that they rethink it. It isn't actually an issue with dd's disability per se which would be a social care matter but an accessibility issue with their service which means they ought to do something to remedy it.
I am not holding my breath though and now seeing if a laundry collection and delivery service would work.
Sorry to go on about this but as dd likes clean clothes it is a really significant factor for her.

Hello, just found you all.

DS has gone to uni. He is high functioning ASD / Aspergers (high anxiety being one of the biggest issues) with a host of specific learning difficulties.

He found freshers week very difficult and is now at the weeping stage on the phone to me constantly and clearly not coping.

The biggest issue, is that because he went through clearing he is in halls that are miles away from the uni and he is mixed in with older students from different unis, none of whom are really looking to make friends. He feels super isolated and lonely and his anxiety is ridiculously high.

I've just talked him through an email to make an appointment with the DSA team, who he has already been to see, to see how his DSA is progressing.

Can anyone tell me what help he could get or how the uni might be able to support him?

Margo I don't know what university he is at, but York for example has a whole page in their Accommodation section on Health Disability issues regarding allocation of accommodation. It looks like the gold standard for how you deal with issues such as you describe, where a student needs to go to the top of the waiting list for more appropriate accommodation because of their declared needs.

It sounds like he needs a) to be with other freshers, in a quiet flat (and I know that in some universities they try to group students on their habits, late, early, party, homebird)
c) nearer campus
d) possibly ensuite

York for example mentions that more costly alternatives can be funded with disability funding, and explains how to apply for them.

Anyway, I know plenty of people who faced with a long distance from halls and a non fresher community would feel desperate, ASD or not. I had a friend who went to Edinburgh back in the 80's who was marooned in a similar situation and it was GRIM, only slowly did the course become more bearable when the lectures started and she met people through that. She went on to be very happy there, but the accommodation side put an absolute dampener on her start there.

Also if he has a declared disability, and gives you permission (via an email perhaps?) to talk to the accommodation office, you could do the talking for him?

Definitely talk to both accommodation and the disability service about moving to on campus accommodation. If he can do it himself fine but if he gives written permission you will be able to speak for him.

Do I take from your post that his DSA funding hasn't come through yet? If that is the case but he has been recommended a mentor (which is pretty standard for ASD) then he could ask if the university disability services would put it in place now. It is very uncommon for student finance not to fund anything in the Needs Assessment, so they should be amenable.

Wow, thank you Nettleskeins and NoHaudinMaWheest, I feel out of my depth here.

I think we probably missed a trick with the accommodation. He went through clearing and at that time, the accommodation department for the uni he chose, were all on holiday. All the while, we could see that there was virtually no student accommodation left anywhere at all in the city, so we took the last place at the halls he is in now and we have signed a 42 week contract. I presume he is now stuck with that?

No his DSA funding hasn't come through yet. He's been given a form but he needs help filling it in, so he has an appointment with the disability support person from the university this afternoon.

I've just talked him through what to ask for and am about to email him as well, because he is just weeping at the end of the phone and I'm not sure what he is taking in.

Is he in private halls? If it is university accommodation it should be possible to move the contract. Sorry I don't know what happens with private halls but it should be in the contract.
It sounds really hard for you and him.

Can you contact disability services? You can always give them information even if they won't actually talk to you about your ds.

NoHaudin he had a good meeting with disability services and they are going to try and help him find something else closer to the uni. It is private halls but the uni recommended it.

I helped him with some emails to confirm all the actions that were agreed. He’s a little brighter this evening.

That sounds really positive Margo

Glad it is moving in the right direction margo. Keep us posted about how it goes.

I have eventually heard from the DWP about dd's PIP renewal. I have managed to get the face to face interview moved from here to her university city. She could really do without another stressful thing to deal with but there is no alternative. Fortunately the date is around the time I was planning to go up anyway.

Thank you all. Glad I found this thread. I've had time to read through it properly now.

Fingers crossed for your DD's PIP renewal NoHaudin.

MargoLovebutter

I find the distressed Dc on the end of a phone incredibly hard to cope with.

Fortunately Dd coping ok so far. We have got the DSA report back but no idea when any of the equipment or services will be put in place.

NoHaudinMaWheest if you are her appointee they are supposed to talk to you not your Dd. As far as I know they just need to see her.

Dd's was very straightforward, no issues despite all you hear in the media. The assessor was very fair.

stressed good that your interview went well. I am not sure what to think. I hear such contradictory stories that I am tempted to think that it is largely down to luck. Which is of course totally wrong.

Update - so with the guidance on here, it gave strength to my metaphorical elbow and I was able to arm DS with a list of points to make, when he met the university Accommodation Officer.

She was really helpful and understood exactly why he'd be so unhappy and isolated and she also brought the Disability Officer in to join the meeting, who DS had already met. She is really nice and basically they made him feel like they were on his side and he wasn't alone, which gave him a real lift.

They've been in touch with the people who run the halls that he is in and explained that he needs to move and they have agreed that as soon as he can find someone else to take his room, he can be released from his tenancy agreement - phew!

Rooms in halls much, much closer to the Uni have now become available, so it is looking positive.

I've been able to help with emails remotely and the telephone conversations are no longer teary, which is good. Fingers crossed he can find someone to take his room soon.

He also had his specific learning difficulties assessment report through and that has confirmed to the disability team at the Uni all the additional support he needs and whilst he qualified for DSA because of the ASD anyway, it helps specify all his learning requirements and the bits that he going to find a struggle.

As ever I keep wondering if this is the right thing for him, but he seems determined he'll make it work.

margo that sounds really positive.

If he is determined, it is half the battle. But I know how worrying it is. With ds I was convinced he would be back before the end of the first term. While there have been some rough patches, he is still going forward though.