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!)

[TheThirdOfHerName]

That sounds really encouraging Margo

[MargoLovebutter]

Thank you NoHaudin and TheThird, if he manages all of this, it will be a triumph. Thankfully, he probably massively over-shares with me, so I can help him remember all the bits of admin he has to do to make it happen.

[TheThirdOfHerName]

DS1 is already starting to feel unwell. The combination of homesickness, drinking too much, not eating properly and disrupted sleep patterns probably didn't do him any favours. He is going to go to the health centre tomorrow and ask for an appointment. He says he wants to go back on medication, which for him is a sign that he is really struggling.

The silver lining is that he decided to make that appointment with disability services after all.

[NoHaudinMaWheest]

the third sorry that he is not well. It is good that it has prompted him to get help but rather a brutal way for it to happen.

[HardwickWhite]

TheThird i’m Sorry your DS is struggling but you must be relieved he is seeking help.

DDs laptop and transcription stuff is finally being delivered this week, and she has changed her training to Skype. She hasn’t mentioned her mentor again and I don’t want to push it, but I am concerned that she is spending a lot of time in her room (going back there for lunch even sometimes) and isn’t doing any sport. She has had a chest infection and is blaming that, but I can’t help but read more into it! I will be much happier when we see her in half term, even though it is only for a couple of days.

[TheThirdOfHerName]

I managed to speak to DS1 today. He has not left the flat all weekend and is spending a lot of time sleeping. He has already missed some lectures and is already feeling behind. He has an appointment with disability services tomorrow and I'm encouraging him to make an appointment with the GP too.

[TheThirdOfHerName]

DS1 managed to go and see disability services today! He's been given exam arrangements: 25% extra time, 5 mins break per hour and can do them in a quieter room. He has also made an appointment with the GP.

[NoHaudinMaWheest]

the third that is a relief. Hopefully it will encourage him to ask for help next time he needs it.

Update on the laundry situation. Accommodation have asked estates services to improve access to the laundry room. They have also asked the contractors who manage the laundry machines to improve access when they are replaced (which is due to happen soon).
All good for the long term. In the meantime they have agreed that the resident assistants will continue to help her.
Mama bear letter was obviously effective .

[TheThirdOfHerName]

I'm pleased to hear that they are going to consider accessibility going forwards. I hope the commitment to help her with her laundry continues.

DS1 has been re-started on medication that he has taken in the past. Hopefully it will work.

[NoHaudinMaWheest]

Here's hoping.

[HardwickWhite]

That is brilliant news NoHaudin. Well done.

DDs equipment has arrived. We got lots of photos, then a flurry of texts when she realised she needed more USB inputs than there are. That is all sorted now (DH loves that sort of crisis), and she is mid training.

I hope that with this in place she will feel more confident to go and get some exercise other than walking between lectures (by herself). She says she is averaging 16k steps a day, but I'd rather she went for a swim or something. And rather she would walk with someone else! I'm fussing too much...

[MargoLovebutter]

Great news NoHaudin about the laundry issues.

TheThird sorry to hear your DS has been struggling but it is good that he was able to get to the GP before he hit crisis point.

Hardwick glad to hear your DD received her equipment.

My DS is not happy. It seems that after the initial flurry of 'support' from the Accommodation Officer, nothing much has happened and it all seems to be down to DS to re-let his current room before a move to closer halls can be facilitated. He has put ads up but no one is interested. He is also not well and has been referred to hospital under the two week rule, which is all a bit worrying. I won't go into more detail, because it is so unusual I'm worried it could out him or me in some way. No doubt the appointment will come through for a day in half term when he is hundreds of miles away and we will have to do an exhausting round trip to keep it.

I'm so disappointed with the uni Accommodation people but I'm not sure how to do more.

[NoHaudinMaWheest]

hardwick good training and equipment in place. At least she is getting some exercise.

margo That sounds worrying in re the ill health. Just leaving it to him to relet his room is actually not that helpful. He probably needs to go back to accommodation and ask for more proactive input.

[MarchingFrogs]

@MargoLovebutter, has your DS tried starting a thread on TSR (The Student Room) to advertise his room? Or looked on there to see whether at one is looking for a room in halls, either at his university or at any of the other ones which use that hall of residence, if his room isn't in an allocation restricted to his one? If he does advertise on there, he should ask people to contact him via private message, rather than include his phone number in the post, obviously (at least, one would think it was obvious, but a worrying number do post their phone numbers). Or you could post on his behalf?

[MargoLovebutter]

MarchingFrogs thank you for that suggestion. At the moment, he is advertising it some kind of special board for the various students in the city that he is based in. There is also a FB page as well. I'll suggest the Student Room to him as well.

He is very despondent, thinks he is going to be stuck there for the year. The managing company have just fined each member of his flat, saying that the communal areas weren't clean enough. DS is really upset as he is clean and tidy and always washes up and puts his things away. He says the communal areas weren't even that messy, there were just some unwashed pans. He also says as the youngest person in the flat, with people he hasn't even had a proper conversation with yet, he has no idea how he is supposed to galvanise them into doing washing up! I had no idea that fines could be levied on an ongoing basis. I thought that you paid a deposit and if the accommodation showed more than wear and tear when you left, then you lost your deposit. Has anyone else heard of ongoing fines?

[NoHaudinMaWheest]

I think on-going fines are reasonable common in halls as opposed to flats. I have heard anecdotally that private halls are more likely to fine and to be fussy.
Communal fines are really unfair as there will always be some who are well off enough for them not to affect them and who really don't care about others.
I hope he manages to move soon. Again it is anecdotal but university accommodation seems only to fine if there is really unacceptable mess. They also seem to be more pastorally inclined as they are not just there to make money like private halls.
If it is really affecting his work and wellbeing, he could ask disability services if they could intervene on his behalf.

[TheThirdOfHerName]

DS1 says that in his hall alone the fire alarm has gone off 6 times in the last four weeks. He says he thinks several of these have been planned fire drills, rather than burnt toast etc. He is already hypervigilant and has started getting panic attacks again for the first time in months. He has emailed the accommodation office to clarify how often they do planned drills.

[MargoLovebutter]

That sounds very stressful TheThird - hopefully it might die down a bit now.

[Stressedoverkids]

Oh I feel your pain. Nothing like a fire alarm to tip Dd over the edge.

Emailing them is a very sensible idea.

[HardwickWhite]

We're about to head off to visit DD for a few days. I am so looking forward to seeing her again.

She still isn't doing any of her sports, or music, and hasn't replied to messages today about (the huge list of) things she wants us to bring. Although rationally I know that she is probably absolutely fine, and just engrossed in work, or watching crap tv, I can feel my own anxiety about her MH rising. I'm really hoping that seeing her in situ for a while will help. I keep remembering things I wanted to ask her about at the wrong time, and never ever when she is face timing with her siblings, or her cat... usually at 4am, or now, when I can't get hold of her, and to leave a message would make a bigger deal out of it than optimal. Bugger.

[NoHaudinMaWheest]

hardwick I hope the visit goes well and is reassuring.
Imagining what is happening or not happening can be worse than knowing.
I know it is infuriating when you think of something you need to ask when there is no possibility of doing so and then completely forgetting when you are in touch.

[TheThirdOfHerName]

HardwickWhite I hope the visit goes well.

I just spoke to DS on the phone; he was on his way to the food court so only had five minutes. Instead of having a relaxed chat, I ended up going into professional mode and trying to do a brief wellbeing / health check, so he probably felt like he'd just had a phone appointment.

[HardwickWhite]

Well it was a strange old week. To start with, I think she was excited to see us all, and was very happy. Then unfortunately she had some bad news about a friend, and resorted to monosyllabic answers to questions, and staring at her phone constantly. I'm hoping it was a perfectly reasonable reaction to something upsetting, but I didn't handle it very well and ended up in tears in a naice restaurant on our last evening together.

She is coming home for the weekend though, which I am so pleased about, even though I suspect it is so she can go and visit her friend (which is a good thing).

[NoHaudinMaWheest]

Hardwick sorry that it was a rather tough week. Maybe when she is home for the weekend you will get a better feel of how she actually is. It may reassure her about her friend too (if that is possible of course).

I am going up tomorrow. Dd has her PIP interview on Thursday which we are both dreading. It will be nice to see her though.
I will also see my mum who has injured her leg. She is, as usual, making light of it but it will good to see for myself how she really is.

[HardwickWhite]

I hope your PIP interview goes well NoHaudin.

DD got her exam dates yesterday and she will be there till a few days before Christmas, I hope your DD gets finished earlier - this is such a long semester for them!