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!)

[HardwickWhite]

DD has managed to register at the GP today. It took another couple of hours, but it is done. An appointment next week to ensure medication etc is all in place.

She also heard today that since she is in Scotland, the university will be paying the £200 contribution to her laptop. She is having one significantly upgraded from the one she spec'd up, but still £200 is not to be sniffed at! She gave the go-ahead for it to be ordered yesterday, so hopefully the physical thing will materialise soon-ish.

She is retreating slightly from the others on her corridor (all posh and super confident apparently) but has found others in the block that she feels more secure with. I am trying not to worry about that.

[TheThirdOfHerName]

That all sounds very positive! It's good that they're waiving the £200 student contribution. DS1 paid £385 (£200 plus £185 for upgrade).

DS1 is eligible for the flu jab but has severe needle phobia. It turns out that he might be able to have it as a nose spray, which means he might actually have it done before he goes.

[FishSupperForOne]

Do you mind if I butt in to ask a question, you seem a very knowledgeable lot

Dc was diagnosed (by a CAMHS clinical psychologist) with ASD in yr 9, which enabled 25% extra time in GCSEs. Dc is now in yr 13 and SENCO says we need another report to get extra time in A Levels and also to qualify for DSA.

We are happy to sort this out but have a niggling feeling that it’s not strictly necessary. Can anyone advise?

[TheThirdOfHerName]

SENCO says we need another report to get extra time in A Levels
DS2 was diagnosed with ASD in Y5 but has never been elegible for extra time in exams. The school did their own tests in Y9 to see whether he would need extra time in his GCSEs - they did not ask for extra reports from a healthcare professional.

and also to qualify for DSA
We're not quite there yet, as DS2 is in Y12. I'd be interested to know if the DSA requires an up-to-date assessment for ASD.

[TheThirdOfHerName]

Have looked at the NAS website and they imply that a letter from the GP is fine, although it does have to specify how ASD affects their ability to study.

www.autism.org.uk/about/transition/starting-college-uni.aspx

DS1 does not have ASD, but all he had to provide as evidence of long term illness was a letter from the GP.

The GP letter included evidence of how his illness had affected his studies from Y10 to Y12, e.g. having to drop from 11 GCSEs to 8, being on a modified timetable rather than full-time, not being able to do an EPQ.

[HardwickWhite]

DD got extra time (and a quiet room) for A Levels, and now uni?DSA on the basis of a letter from her therapist.

Perhaps it is a school quirk? I did read about someone on another thread who had a spectacularly unhelpful/destructive school.

[HardwickWhite]

TheThird I spend a lot of time in primary schools, and last winter lots of children got the flu vaccination - almost all of them got it up their nose.

[TheThirdOfHerName]

HardwickWhite that's reassuring. He is 6 foot and 13 stone, so a bit big to sit on my lap in the usual parental hold for vaccinations.

When he had his MenACWY, the school nurse had to make a special trip to vaccinate him separately. Part of my job involves facilitating vaccinations in a secondary school and he is definitely in the worst 1%.

[TheThirdOfHerName]

This morning DS1 planned his budget for the term and sent off the paperwork to claim back the costs for the printer paper & ink he bought. All went well.

Then I suggested he log in to the university website to see how to access the reading list. Some of the books for background reading and week 1 are available online, so he tried downloading one (this didn't work because it went into Zotero which he doesn't know how to use) and then accessing it via the English Historical Documents website (he couldn't find it using the search facility).

He then started catastrophising, and now feels disheartened and thinks he will be behind from the outset.

[NoHaudinMaWheest]

the third that's a shame as he has been doing so well. I seem to remember background reading being pretty irrelevant but I was doing a different (arts) subject.

Ds is duly delivered to his university town. He and 5 friends are living in a converted pub this year.

The engineer who came to put dd's ergonomic seating together on Tuesday failed to contact her until he was actually at the halls. She wasn't there and phoning home which is hundreds of miles away and I was another few hundred miles away in a different direction didn't help either.
Which means that she has to wait until the week after next for it to be constructed when she will be well into studying and really needing it.
Being well ahead with preparations doesn't always work. [sigh]

[NoHaudinMaWheest]

Fish supper I have more recent experience of universities so can confirm that it is not necessary for DSA to have a recent autism report. As his dx is fairly recent I would send that and possibly a GP letter.
The only post 16 evidence DSA ask for is if you have SPLD (dyslexia etc). Then you need a educational psychologist's or specialist teacher's report done after the 16th birthday.
Universities make their own exam arrangements so each one will have their own requirements. You should ask what they are when looking at universities. The disability services will know.

I am more out of date with A levels as it is 2 years and 5 years since mine started theirs and I know exam boards have been getting tougher. However neither of mine (both of whom have ASD and dyslexia) needed extra evidence for A levels even though they both changed schools for 6th form (both different schools).
You can find each exam boards regulations by googling. It would be worth talking to the school again.

[TheThirdOfHerName]

NoHaudin that's really frustrating.
You can prepare and put everything in place and still be at the mercy of logistical difficulties.

[Fishsupperforone]

Thanks so much for the information, it’s so strange to be told one thing by school and a different thing by people who’ve actually been through it. I shall look up the specific exam boards and see what they say.

[NoHaudinMaWheest]

Especially for university and DSA requirements, schools can be very inaccurate. It is better to check for yourself or ask the universities themselves.

[HardwickWhite]

DD got a lovely note from her personal tutor congratulating her on getting everything in place before she started and after a few days back and forth, her laptop is ordered and will be delivered in around 10 days. I am cynical (quite a strong word, but I am exasperated with her today) about her ability to arrange a time to meet them for it, but we'll see.

Freshers ball was avoided. I suspect it was overwhelming (despite her having an outfit chosen) but I had hoped she would have a go at some element of freshers week. She isn't much of a drinker, and there does seem to have been more of an emphasis on that than she expected.

She did actually squeal with delight when she looked at her text books though, so maybe she'll pick up when lectures start tomorrow. Fingers crossed. Even DH is worried about her though, and he is usually super calm.

[NoHaudinMaWheest]

Hardwick hopefully classes starting and more of a structure will help.

Dd is feeling overwhelmed with all the administration involved. She is terrified of asking anyone for anything.
She only got notification of a text book she needs for a lecture tomorrow on Friday. It is reserved for her at the nearest bookshop but that means that she has to go there and ask for it. I think she can manage it. She knows where the shop is and how to get from there to her lecture but her confidence is so low. Fingers X

[TheThirdOfHerName]

DS1 did his Sonocent training today (online & Skype) while I was at work. Then he's arranged some more training (Zotero?) for later this week.

He had a low moment last night when he said that he doesn't know how to make friends. He is actually socially quite adept, and that is the aspect of him starting university that I'm least worried about. I think it was just low confidence and anxiety talking.

[TheThirdOfHerName]

NoHaudin it helps DS1 if he doesn't try to do too many of the most 'costly' tasks at once. So (for example) making a difficult phone call or going to a shop to ask for a reserved book would give you a free pass for the rest of that morning/afternoon/day where you don't expect yourself to do anything else that tough. For someone with a physical illness or disability the most costly challenges might be different.

[NoHaudinMaWheest]

Thanks thethird. She managed to get the text book but got her times wrong and arrived an hour earlier than she needed too. I got a cross text because I had said the main shop was accessible though I knew the academic department wasn't. However the main shop needed a portable ramp too. There were staff on hand to help so it was ok.
However it sort of illustrates that everything involves all the fear about talking to people which comes from the her ASD and the practicalities of getting about.
I am contemplating going up again next week to try and get some of the remaining admin done with her. I hadn't planned to go so soon but there are several things mounting up and now the GP wants to change one of her medications. This is quite significant and he really needs to know all of the back history.
I don't want to baby her but I also want her to be able to concentrate on her academic work and not flounder unnecessarily.

[HardwickWhite]

NoHaudin that bookshop is spectacularly uppy and downy. I did see a couple of stair lift bits but it was quite convoluted to get to the academic department. She has done really well to manage that. Please tell her a random stranger is impressed with her!

[NoHaudinMaWheest]

Thanks hardwick

I am sorry to be bringing endless woes to this thread but we have another problem.

Dd can't manage the laundry in halls. The door is heavy and awkward and she can't get in or out unassisted. The buttons to operate the machines are also at the back and difficult to get at.
We realised in the summer that this was going to be a problem and the accommodation services assured us that help would be available.

Now they are saying that they can't help.

The student resident assistants have helped her once and will probably do so again tonight but long term we will have to sort out something else.

Essentially this means I will have to find a care agency to do it.
I wish they had told us this in the first place so that I could have put something in place from the beginning.
At least I am going up next week and can hopefully sort it then.

[TheThirdOfHerName]

Well that's not very accessible!
I appreciate that the laundry room might have to have a fire door, but how are they expecting students with disabilities to wash their clothes?

[NoHaudinMaWheest]

There are lots of fire doors which have power assist so she can manage fine. But none on the laundry.
Actually there are several baffling things like this. If you know which rooms are designed to be accessible why put the pigeon holes for them right at the top of stack?
Why in a recently refurbished tower block have an outer automatic door and not do the same for the inner ones? and why have glass doors with no kick plates in the same building.?

[eatyourveg]

when ds3 applied last year, he sent in a copy of his original asd diagnosis letter from when he was 3. He also sent in his statement from school.

[Gwynfluff]

Please, please @NohaudinMaWheest ask her to go back to her named disability adviser - maybe help he compose the email and find out who her departmental contact is - all students should have one. Copy her personal tutor into the email as well.

She may well need some additional one-to-one support to help her learn planning skills and managing what can feel like competing demands.

It may be a blip but have a low threshold for getting intervention.