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

(247 Posts)
NoHaudinMaWheest Mon 30-Jul-18 11:03:23

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!)

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EllenJanesthickerknickers Mon 30-Jul-18 11:23:05

Hi NoHaudin!

DS2 is starting back at college but has transferred to HE as it's an HNC. So no more EHCP, have got some funding from DSA but it's all change.

My group of 6 mums with DSs (all DSs!) from when my DS2 was in a special preschool, 15 years ago, have one young man starting at Portsmouth. It's very exciting that one of our boys is going to uni! Even if it's not DS2.

DS2 is staying at home. He's not ready to move away and doesn't really like studying that much, but it's better than the alternative which would be trying to find a job. He has ASD and is really quite badly affected by it. He doesn't 'pass for normal' at all. Staying in education for him is just delaying the transition to adult life, to give him a chance to mature a bit more.

Our experiences will be a bit different from any others actually leaving home and going to uni but some things will be similar.

NoHaudinMaWheest Mon 30-Jul-18 11:50:17

Hi Ellen.

That sounds like a good next step for your ds.
My ds doesn't really like a lot of studying either just some bits that interest him.
I know the mother of someone who was at secondary with ds as his brother is at dd's 6th form. He (the older brother) has gone a similar route to your ds and is going to convert his HNC to a degree next year so it has been good for him. He is going to a local university so still living at home. He also has immediately obvious ASD though amazingly didn't get a dx until he was 17.

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EllenJanesthickerknickers Mon 30-Jul-18 12:20:40

Gosh, no DX until 17! His parents must have been making adjustments for him really well, maybe too well? DS2 was 3 when he was DXed. It's always been really obvious.

TheThirdOfHerName Mon 30-Jul-18 12:28:02

Thank you for starting the thread. DS1 is hoping to start university this September.

He is well at the moment but from Y9 to Y13 he suffered from physical and mental illness including severe anxiety, depression and gastrointestinal issues. He was on a modified timetable at school.

DSA will pay for some equipment, software and mentoring at university. The challenge is going to be encouraging him to actually use this support.

His pattern is to say he is fine and doesn't need any support, then as academic pressure builds, he becomes more stressed and tired until he becomes ill.

NoHaudinMaWheest Mon 30-Jul-18 12:51:35

the third nice to see you.

Your ds's pattern sounds very like my ds though he doesn't become physically ill just sleeps almost all the time.
I did tell his disability advisor that he was likely to do this and she had spotted that his 'fine' didn't always mean that he was fine.
You need the student's permission to have a conversation with disability services but there is nothing to stop you passing on relevant information.

Ellen his mum had been trying to get a dx since he was 5. She has been very good at supporting him but I don't know how the professionals managed to miss it for so long. I only knew him slightly from school and even at that it was obvious. I couldn't believe it when his mum told me he didn't have a dx all the time he was at school with ds.

OP’s posts: |
Somewhereovertheroad Mon 30-Jul-18 13:29:30

Thanks for the thread NoHaudinMaWheest Dd has two ASD student orientation days this week but I have no childcare for Ds2 (complex needs) except Ds1 who us 16 and doesn't want to do it. Arghhh which one to prioritise??

Feeling very stressed confused


NoHaudinMaWheest Mon 30-Jul-18 13:49:43

Difficult one.
The orientation days have been very useful for both my dcs so if it is at all possible to get dd there I would prioritise that. You wouldn't normally need to stay with her but I don't know what your logistics are.

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Somewhereovertheroad Mon 30-Jul-18 14:25:48

NoHaudinMaWheest the college has put on a few sessions for parents, time management, stress reduction etc and I really found it beneficial to talk to other parents with young people at the same high functioning level. In some ways I wanna go more for me than for Dd.

She has now decided she doesn't want to go.hmm

NoHaudinMaWheest Mon 30-Jul-18 15:11:59

Oh that's a shame. And I can see why you would want to do the parent sessions. I don't suppose you could leave them all together and just go yourself?

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chocolateworshipper Mon 30-Jul-18 16:51:53

Slightly off topic, but may be of interest. Some DC with special needs could consider a higher apprenticeship. I know of a young lad with ASD & MH problems who is doing an apprenticeship and the college helped him to find a very sympathetic and supportive employer. He benefits from being in that environment at work, but still having support from the college that offers counselling and regular reviews re safeguarding etc.

NoHaudinMaWheest Mon 30-Jul-18 18:17:20

Thanks chocolate. It is good to know that there is support available for dcs going down other routes.
Sometimes work may be better than more study but if there is no support, it is tough for those who are not ready yet for full independence.

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wigglybeezer Mon 30-Jul-18 23:14:34

DS2 is off to uni in September, he has a degree of dyslexia, HF ASD and a physical disability affecting his dominant arm and hand. He's also going to be one of the youngest and has bravely agreed to share a room in halls, this meant he could get a room in one of the smaller halls right beside the library and his dept. We're also near enough that he can come home at weekends if needed. It's a very academic course at a sought after uni and we are very proud of him but a bit worried about him getting exhausted.

NoHaudinMaWheest Tue 31-Jul-18 14:11:20

Welcome wiggly. It is very brave of your ds to share a room. I don't think either of mine would have managed that. It is great that it is near his dept and library as he can always go back to his room to rest if necessary.

Dd has just been emailing disability services about an emergency plan for the odd times when she loses function in her hands. However we will have to organise personal care for those times which is difficult from hundreds of miles away. I have no idea which care providers are any good.

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wigglybeezer Tue 31-Jul-18 14:21:56

It was a tricky decision to make re sharing a room but it was the only way to ensure he got a place in a catered hall handy for classes ( so that he could have a break during the day as you guessed). He is quite easy going but like to go to bed relatively early and doesn't drink so I'm hoping he doesn't get a party animal roommate. On the other hand a friendly gregarious roommate could help him meet more people, he can do friendships but is poor at initiating and small talk. I pity anyone having to put up with his smelly feet though.

NoHaudinMaWheest Tue 31-Jul-18 14:57:33

I hope he gets a compatible room-mate which could be really great for him.
Ds went into a quiet flat which we requested mainly to avoid the partying/drinking. However it was really too quiet. I don't think any of them did much more than nod 'hello' to each other in the kitchen all year.

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HardwickWhite Wed 01-Aug-18 10:21:43

Hi, thank you NoHaudin. DD has some MH issues, and we only got a diagnosis last December after a crisis. Everything is still new, and raw, even though she apparently is improved. I just can’t figure out what I should do, what I can do, and what is over reacting.

Both her firm and insurance choices are hundreds of miles from home. If she gets her firm, she starts on the 10th September, so we’ll only have a week from getting back from holiday to get sorted and get her up there.

She (well me) has made contact with disability services at both firm and insurance, and can’t do any more till she knows where she is going. She has an appointment for DSA needs assessment next week. I very much want her to have a mentor, someone who will spot if she is going downhill. She wants things which will make it easy for her to avoid classes if she is having a panic. I feel very strongly that if that is what she is doing, she isn’t well enough to be away from home. That is the bit that is terrifying to me. She just shuts down and hides when she is unwell, and I need her to be visible to someone if I’m not around.

I do realise some of this is my anxiety though. We came too close to losing her for me to lightly skip towards her leaving home and being on her own.

Can anyone tell me if there is anything else I can do?

Thank you for this safe space!

TheThirdOfHerName Wed 01-Aug-18 10:37:29

HardwickWhite we are encouraging DS1 to give Disability Services permission to contact us if he becomes very ill or if they are worried about his wellbeing. We might ask him to do the same with the GP.

TheThirdOfHerName Wed 01-Aug-18 10:42:25

She wants things which will make it easy for her to avoid classes if she is having a panic

DS1's assessor told him that he has to physically attend lectures, seminars etc and there is no way around this.

However, DSA is paying for software to make it easier for him to take notes if he feels too anxious to concentrate properly, e.g. Sonocent, where he just has to press a key to audio record what the lecturer says for each slide.

stayathomegardener Wed 01-Aug-18 11:44:42

Dd has CFS Irlens, digestive issues is dyslexic and also a degree of anxiety most likely from dealing with that lot.

She is going into her second year and has her needs assessment in a few weeks.

I would really appreciate any advice on what support she could ask for to help with the fatigue as that seemed to hold her back the most.
Dyslexia and Irlens support is quite obvious in comparison.

In our experience in first year we gradually provided a car, fuel and high food budget for quality ingredients but it cost a fortune. I'm dreading doing it again this year as DH has now retired.

HardwickWhite Wed 01-Aug-18 11:52:40

Thank you TheThird that is good advice and good to know.

TheThirdOfHerName Wed 01-Aug-18 11:53:28

She could ask for accommodation as close as possible to lectures, I'm not sure that comes under DSA though (unless it would cost more).

If they can't provide accommodation very close by, she should ask for approval to claim fuel costs to be reimbursed under 'general allowance'.

NoHaudinMaWheest Wed 01-Aug-18 15:51:42

Welcome Hardwick and stayathome.

Hardwick I would expect that your dd would qualify for a mental health mentor. They would hopefully notice if things were going downhill and certainly spot if she misses appointments with them.

Ds has had severe OCD and I had similar worries when he started at university. At our initial discussion with disability services at his university, they said this was their standard procedure:
Student misses an appointment, they email them.
If no reply/another missed appointment, they contact their department to see if they have been at classes.
It they haven't been seen, they go and knock on their door (if they are in halls only, I suppose).
I am not sure that all universities would be this proactive but it is worth asking what their protocol is.

I don't know if she is still seeing mental health services but if she is then it is worth ensuring now that a referral is made to the university city's services, even if only to ensure that she is in the system.

If you can encourage her to make sure that her personal tutor knows of her difficulties that would be good too.

flowers it is terrifying when you know how vulnerable they are.

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NoHaudinMaWheest Wed 01-Aug-18 16:10:52

stayathome I have CFS though I didn't develop it until after I was at university.
I have some random thoughts some of which you have probably already tried or put in place but hopefully some might be useful:

- Would being catered help? (Maybe not with digestive issues and it isn't always high quality but at least a prepaid card for bad days)

- Accommodation near campus as thethird said. Accommodation services will usually do their best to meet disability requirements although they may ask for medical proof.

- If travel is unavoidable, DSA will pay for fuel allowance or taxi fares. It can be tough to get but you can go back to your needs assessor to ask for it.

- Ask if the library has quiet study rooms which would cut down fatigue from general noise. It would make it easier to have a short lie down too.

- Recording lectures will help with fatigue and dyslexia.

- Is her department aware? Assignment extensions can be a bit of a doubled edged sword but could be useful if things are particularly difficult.

- I assume that she is in touch with disability services but it is worth discussing things with them again. They may have other ideas.

- Does she get PIP (personal independence payment)? Obviously I don't know how severely affected she is but it is worth considering. There is an extra amount on the student loan if you get PIP as well as the actual payment itself.

- If the worst comes to the worst, suspending studies for a while is not the end of the world (though that was not my initial reaction when ds first told me he was considering doing exactly that shock ).
All students can have an extra year of finance to finish their studies.

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Gwynfluff Wed 01-Aug-18 16:48:18

I work in a uni in a support role - here are my tips (if they might be of help and to add to Nohaudinmawheest)

- ensure they sign up with a local GP - definitely with a University Health Service GP if there is one. They need a GP nearby and uni health services are normally specialists in 18-25 year olds.

- encourage them to make use of any one-to-one support offered via disability support. So mentors or academic tutors. They are specialists in HE and likely to offer a level of support they have not had before. Remember being at Uni is not just about completing the course, but also maturation and learning to manage more indepently. So using the offered support and thinking through beforehand what their needs might be (scheduling, staying on track when anxious, structuring essays etc) will help in the transition to a higher level of study and one in which independence and self-direction is expected.

- encourage them to be open and honest with their personal tutor and if they have someone with whom they have no rapport or who is not supportive, don’t be afraid to ask for someone else. Most personal tutors are trained and some are much better than others at being supportive so do get the right one. The personal tutor is an academic in the department of study and all students have one.

- if you’ve intervened and supported them a lot to ensure A-levels are completed - use the next few weeks to encourage some independence. Make sure you’ve shown them how to use the washing machine and how to do a shop. Encourage habits such as putting all appointments on a calendar (phone or paper - whatever they prefer), setting up reminders and daily checking of what they need to do. Again, only if this is something your child struggles with.

- reassure them they can go back to disability services after the initial contact and appointments if anything changes - they will likely need to initiate the contact again but they can go back if they struggle at all.

- make sure they have read all official procedures for extenuating circumstances for exams and asking for extensions at the start of term. Often students in crisis or times of stress find it hard to find and sometimes follow the policies which can make things difficult - so better to look them up when calm and feeling ok.

-have a low threshold for deciding time out may be required. And also for deciding if your child definitely wants to start uni in September- if you think they need another year, defer the place. SFE typically give one additional year of funding and normally start requiring evidence for further funding, so doing most of the year and then taking leave can make things more difficult in terms of funding as the student has used most of the year’s funding.

- remember HE is about maturing and it is meant to be challenging. Encourage your child to have another go at things and try things out. For example, if they struggled to present at school due to anxiety - encourage them to work through strategies with their learning mentor to try and manage anxiety and have a go. It’s a good employability skill to have and they as much right to think it is something they can learn to do as they mature as anyone else. Good disability support and services give positive support and encouragement to enable the student and to allow them to develop and flourish, without having to struggle.

So be proactive, speak up, access support as early as you can, know who to contact in a crisis (don’t wait until the crisis happens), start to find the strategies that are useful and think about the type of support you need - will all help.

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