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]

His new phone arrived this morning, so he spent half the morning setting that up and sorting out mobile banking and the university app that shows him his timetable etc. After the equipment delivery guy left, he finished the laptop set-up, tried to request an insurance quote using their online form, then phoned them when that didn't work. Then he researched deals for printer cartridges and paper and ordered those. By that point he understandably felt he had done his fill of admin for the day!

He is working tomorrow morning, but is planning to look at a couple of YouTube instruction videos for the audio note-taking software.

He was encouraged to hear that your DD was able to do her training online.

[NoHaudinMaWheest]

We did have a clash. The trainer contacted her just as the wheelchair engineer knocked on the door.
However the trainer waited until she had tested the chair which is fine, just seatbelt and stick holder to sort out.
She says the training was very useful and definitely worth doing for her.

[TheThirdOfHerName]

How was the training delivered? Did she have the software open in front of her while the trainer explained through speaker/headphones?

Good to hear that her chair has arrived.

[NoHaudinMaWheest]

Yes as you described but there was a system which meant that the trainer could see her screen and so it was easy to guide her.

[TheThirdOfHerName]

Thank you

[HardwickWhite]

That is really good to know about the training. DDs equipment won't be in place before she starts, and I'm sure she would be happier doing it with a trainer online and in private rather than having to do it face to face.

Approvals are all in place now, and she admitted it had arrived when we were away, but she had not read it properly and did not realise she needs to make some calls to get the ball rolling. We'll get to that tomorrow. This is the bit that is worrying me. She will just do nothing and say nothing, rather than ask for help.

I had a horrible phone conversation with DDs therapist last week, that has left me feeling very battered. At risk of oversharing, it reminded me very much of a conversation I had when DM was very, very ill in hospital, but had not eaten for a whole day (trays taken away untouched). The nurse looking after her insisted it was empowering for her to be left to feed herself, and that to help her was detrimental to both her recovery and her rights. I had to point out that someone with two broken arms and a broken collar bone, and a disintegrating spine was physically unable to feed themselves, and the reason she was in hospital was for nursing care. My conversation with the therapist was very similar, and it only occurred to be later that she said the things she said so that she could pat herself on the back for a job well done, and not out of any concern for DDs actual mental health and well being. I'm glad that we have taken steps to ensure she will have local support in place when she starts at uni.

I know others have it much harder than DD, but I am so worried about her being so far away. I know how quickly, and how quietly she can retreat in to herself...

[TheThirdOfHerName]

HardwickWhite that's really hard.

When DS1 is well, he can seem like any other 18 year old, but when he becomes unwell he avoids going out or interacting with anyone, so it's difficult to see how he would access support in that scenario.

In an ideal world, he would be expected to attend weekly mentoring (and perhaps an appointment once or twice a term with the GP) as a default, and him missing those would be recognised as a sign that all is not well.

He is an adult now, and is expected to be responsible for being proactive about his own health. The reality is that he tends to be more like an ostrich, and just buries his head in the sand in the hope that it will all magically turn out fine.

[HardwickWhite]

TheThird DD is very similar. I am so glad a mentor is part of her support package and can only hope it is someone DD will trust (she is very black and white about people). In fact that was all I was hoping for when we applied at first. Everything else is a bonus (for me) and I can see now what a difference the other things will make to DDs confidence in her ability to make the most of her studies.

Some of the software she will be given on her new laptop is free to download, so we'll get that in place on her old laptop so she can use it from the off. It isn't much, but something at least.

[TheThirdOfHerName]

DS1 is supposed to be using audio note-taking software during lectures but doesn't want to use the supplied microphone to record audio "because that would look weird". I tried to explain that he won't be the only one in the lecture using assistive technology.

[HardwickWhite]

Indeed! DD will have that too (eventually!) and only had to get a mic because she refused to change her phone. Some of her lectures will actually be recorded by the uni for them to access later anyway, so it won't be every lecture she has to (or can) use it in. Of the unis DD considered, the one she is going to actually records the fewest lectures at the moment. Even they said they hoped to record all of them within the next couple of years.

[NoHaudinMaWheest]

Hardwick and the third dd is another one who will be recording lectures.

Hardwick I am sorry you had an upsetting phone call with the therapist. Many health professionals seem obsessed with independence and 'normality'. But the truth is everyone is interdependent and recognising that building it into one's life makes everyone happier.

DD and I leave tomorrow. It has been such a short time since results that I don't feel fully prepared.
Dd has only been away from home on her own on school trips or in hospital. We have prepared as much as we can but we are both still apprehensive. I am trying to hide it of course but she knows.

[TheThirdOfHerName]

DS1 finally managed to book his assistive technology training; the first online slot he could get is 5 days before he leaves.

[TheThirdOfHerName]

NoHaudin hopefully by now you and your DD are there and starting to unpack. Hope it's all going OK .

[HardwickWhite]

So DD is in halls. None of her extra bits are even close to being delivered, and she says she asked for face to face training, which I am really surprised about. She got an email from them saying that since she wasn’t starting till next year they were putting it on hold and someone would be in touch nearer the time. She pointed out that her start date is actually tomorrow! A very rare moment of assertivness from her.

Her room isn’t huge but I think there will be space for the printer on her desk when it eventually arrives.

I hope it all went smoothly for your DD *NoHaudin”.

[TheThirdOfHerName]

Well done HardwickWhite (& DD)

[NoHaudinMaWheest]

I hope she is settling in well hardwick. And well done on the assertiveness.

Dd's extra bits haven't arrived either although they were supposed to come on Friday. The stuff we sent via Parcelforce didn't arrive either.

Dd's room is large but it does need to be. She is in the 'party' hall so I hope it isn't too noisy.

We managed to get an early appointment with a GP at the university health centre so that I could go with her. We were both rather nervous as medical responses to undiagnosed problems can be very variable. However he was unfazed by her unknown diagnosis and very helpful altogether. He also offered without my asking to have a record saying that they could contact me or I could contact them about dd.
Obviously this was with her agreement and she has to confirm it in writing but she was as relieved as I am.

[HardwickWhite]

I get really frustrated when stuff doesn’t arrive or doesn’t happen when you need it to.

I’m here till the end of Wednesday NoHaudin and have the car, so can pick up/drop off anything your DD needs. I can leave it at reception, she needn’t encounter me!

DD plans to register at the GP today. She has almost a month of medication with her though.

[NoHaudinMaWheest]

Thanks Hardwick. I will bear it in mind though I think we are mostly sorted if only her boxes would come.

[HardwickWhite]

Fingers crossed!

[HardwickWhite]

NoHaudin I'm sure she will be fine. I am looking for displacement activities tbh...

DD has spent three hours today queuing to register with the GP, and has had to leave to go to her department welcome. I do hope they have lots of space on their list, since she can't go back till Wednesday.

[TheThirdOfHerName]

DS1 has managed to make an appointment with disability services for 2 days after he arrives. If he manages to register with the GP in the first week, I'll be cracking open a bottle of champagne.

[NoHaudinMaWheest]

I would think she will be ok Hardwick. The queuing sounds horrendeous though.

If she can't the St Leonards practice just along from the halls sounded good when we investigated.

The third he sounds as if he is on a roll. I'd get the champagne in now.

The boxes have arrived!

[HardwickWhite]

Hurrah for the boxes!

Thanks for the tip about the GP too.

[NoHaudinMaWheest]

How is your dd doing Hardwick. Has she met anyone congenial yet.

[HardwickWhite]

It seems like the others on her corridor are a nice bunch and a mix of international and Scottish students. The girl opposite her comes from only a few miles from us. She has gone to a freshers event tonight with them, despite telling me earlier that she was too tired. I am meeting her for lunch tomorrow, and hopefully one final hug before I go home.