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Here are some suggested organisations that offer expert advice on SN.

DCD (Dyspraxia) young adults chaos...
17

WaxOnFeckOff · 24/11/2019 18:40

Well, to be fair it's not chaos but not really sure how much of this is dyspraxia and how much is just him.

DS2 only diagnosed at age 17, less than a year ago. Now 18 and living away at Uni. His motor skills are about 5th centile but it's more his mental disorganisation that is the issue.

He's a clever lad and really lovely, thoughtful and kind and is away having an absolute social blast. he does seem to be coping well but has only recently managed to get himself to the disability service for support. He needs a new laptop as his old one isn't portable and is very slow. Disability team said not to buy yet (when asked last August) as he will probably get a contribution towards it. So, he has been going to the library to use the computers. he took his desk top with him but doesn't have a wifi dongle away with him so hasn't been using it.

I'm just finding all this out now as he's been home for the weekend. Add to that that he's smashed his phone, decided he'd take his old laptop up to uni to tide him over - discovered it also has a smashed screen, can't find his dongle, can't get a new one as his disk drive doesn't work to download the drivers. Hasn't completed the forms for the funding, decided he's going to a dance next week, hasn't got the jacket he needs etc etc etc. None of this revealed until Saturday night so no chance of sorting anything before he went back.

So basically, he constantly fails to plan and prepare and then it's chaos and cost to get him back on track. Last time he came home he lost his wallet on the bus on the way home. He really struggles to keep track of his stuff and always has.

Is this what others experience? I'm hoping he learns from his mistakes and I really thought he's made progress but seems not in all areas.

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BlankTimes · 24/11/2019 19:42

That's all part of his condition, he won't/can't learn from his mistakes, he's not NT. He needs help and guidance to be able to complete his course.

Read up on executive function, there's loads of 'how to plan' things online. Read up on processing speed too.

Shouldn't he be having weekly meetings with a member of staff to check what he's done and what he needs to do for the coming week?

Can you contact the disabled students office yourself and let them know he's not coping, then work with them so they can support him enough to be able to do his coursework. Right now, all he's doing is missing out because he's in a disorganised mess (focusing on all the bits and pieces but entirely missing the bigger picture) and someone needs to step in and help him.

Do understand he may not be aware of his own exact needs or he may not be able to verbalise them in that situation to request the help he should be given.

As he's recently diagnosed, his diagnostic report should have sections on his good points and his weaknesses, so go through that for a start.

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WaxOnFeckOff · 24/11/2019 20:05

Thanks, I wasn't angry with him and I'm trying to give him tools to help and he is a lot better in himself and I'm glad about that. i did contact student services both before he went and after he arrived but basically he is a grown adult and I really can't get involved unless he gives me permission to. I've been nudging him since but I really don't want every encounter we have to be me nagging at him and getting him to sit with me and do things.

To be honest his report doesn't say very much, it just repeats back what we said to them in terms of the difficulties he has, the charts they use for the physical issues run out at age 16 and 11 months and he was 17 and a half so they only refer to those rather than stating as a fact.

I have a plan of action for when he gets home at Christmas in terms of trying to send him back a bit more organised but it's a bit like herding cats. I'll look into the executive function stuff too.

His handwriting is illegible so he finally went and spoke to them to get the permission to type his exams and they've also allocated him extra time which he didn't get at school (they insisted there was nothing wrong with him!). he went back for a full assessment of his needs on Monday past which is why we now have the forms which I've helped him with. I'll just need to keep at him to email them back/drop them in.

I saw on the email that they had offered him a laptop loan but I have no idea if he has been offered other support. He has done well in the tests he has done and in the essays he has submitted and he says he's on top of it. Term has ended and he's on a study week next week and then he has only 2 exams to sit but I know he also has at least one essay to submit - that one represents the entire mark for that course.

I've now got him taking photos of important things so he has them to hand and that seems to be helping. He's downloaded his timetable and finally allowed his emails on his phone which he wouldn't do before so he is making progress on things to help himself.

I just find it frustrating when they need him to overcome the stuff he finds difficult in order to access help with the stuff he finds difficult.

have a similar issue with DS1 who is struggling with self esteem and struggles to talk to people. Dr has referred him for counselling with a local charity but in order to get on the list he needed to phone, which is precisely what he can't do - anyway I digress..

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BackforGood · 24/11/2019 21:20

I don't have any advice (sorry) but am jumping on thread to see if any arrives.
My dd2 is exactly the same. Today, I found the form that she needed to have handed in to school by last Wednesday, in order to help them look at how they can help her manage exams, due to the fact she can not cope with the organisation / time planning !!! Ironic really.

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WaxOnFeckOff · 24/11/2019 21:39

Back, it's just really frustrating isn't it? I've lost track of the amount of things he's missed out on because he's not been organised and the amount of stuff he's lost. Including glasses etc.

School both primary and high school have always complained about his writing but him being clever has masked a lot of his issues. I discussed dyspraxia but was dismissed and told that he definitely didn't have it as he can play the guitar. he can't make a sandwich without poking holes in the bread and cutting himself and can't open a tin. He has hypermobile joints too. School arranged for him to type exams but he didn't have a diagnosis so we went directly to the GP when he was applying to uni as I suspected his results were compromised by his issues and also we needed to ensure he'd get the support with typing at Uni if he got in.

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BlankTimes · 24/11/2019 21:44

I just find it frustrating when they need him to overcome the stuff he finds difficult in order to access help with the stuff he finds difficult

This is the whole problem with "provision" for AN, it's not offered in the way a person with AN can take it up on their own, they need help to access the NT-structured "help", but the NT providers just don't understand that or even see the huge difficulty they have created.

That's where dd's education blipped at secondary school, she was supposed to tell learning support what she needed help with. She absolutely couldn't do that because she didn't know. They couldn't see that, I had to go in and lay the law down explain.

You'll find that throughout life. Every time it happens I think people who are offering what they see as "help" cannot really be that stupid to offer a disabled person something their disability precludes them from doing, then it happens again. I just wade in and let them know exactly how absurd they are being, but often they really can't see what they are doing wrong.

I see you're already familiar with talk therapy being offered for people with social and communication difficulties.

I've had a medical professional want to speak to dd alone, when dd specifically wants me there because she can't articulate what she wants to say nor can she take in everything that's being said. Medical professional in question had already been told dd did not want to see them 1to1 and had been told why, yet persisted in asking in the middle of a crowded waiting room. DD was embarrassed and terrified.

Friends son has ADHD, his mainstream school report said 'Freddy would learn much more if he sat still and concentrated on what he was being taught'

So far we've not encountered anyone offering "help" who has been prepared to acknowledge that a person with AN likely has a very much younger emotional age than their chronological age. All they can do is harp on about the person with AN being immature.

Makes me wonder who actually has the communication and comprehension difficulties Angry

Sorry, back to your DS2. I'd definitely ask him to let you approach learning support on his behalf, then you can come up with some solution to give him his independence whilst getting help tailored to the needs he can't express himself.

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WaxOnFeckOff · 24/11/2019 21:55

Blank I see this is common then. Sorry you are having bother too.

I see you're already familiar with talk therapy being offered for people with social and communication difficulties. Not only that, it's the fact that they require him to phone them to access it too. I phoned in the end and explained that he couldn't call but it went over their head and they are going to call him to arrange when they have availability. he knows he needs help but he wont answer and wont tell me if they've called but they wont speak to me because he is 19. he has suffered from selective mutism in the past. What do you think he should be offered?

DS2 is quite good at communicating (if he gets there) but does tend to minimise his issues as he thinks he copes better than he does.

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BlankTimes · 24/11/2019 22:56

What do you think he should be offered?

I think he should try and take what's offered to be seen to be co-operative and if it was my teen, I'd write and let the organisers know exactly how they make their services difficult to access for people with AN and ask them what alternatives they propose for people with communication difficulties because not much that's aimed at NTs actually works well for people with AN.

As a parent, because I know how my dd likes her information presented, I'd be all over youtube looking for supportive videos from young people who have found they have similar problems and have learned how to manage them and want to show other teens what they did. That takes away the need to be seeing someone face-to-face, it removes all anxiety and there's no pressure to be at a strange place at a certain time etc.
In a 1to1 situation with a stranger my dd either goes mute or says I don't know, ask my Mum. Her anxiety is through the roof, she twists her fingers so hard it looks as though they'll dislocate and she'll agree with anything anyone says if she thinks that will end the appointment and she can get out of the room and go home where she feels safe.

It depends how your DS1 learns best, how he's most comfortable and how he assimilates the information he's given. If you can provide the information he needs in a way he's happy to receive it, then it's a win-win.

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WaxOnFeckOff · 24/11/2019 23:17

Thanks Blank, that's really useful. Such a shame for your DD.

DS1 doesn't have a diagnosis of anything. We were told after an initial appointment around age 11 that he has some asperger traits but equally had lots of things that didn't support diagnosis. They suggested any assessment would come out borderline. At that time he was doing better after some issues with bullying so we left it at that.

He's had good times and bad times and he basically finished his uni year at the end of March and barely left his room other than with us for 6 months. We were unable to persuade him to do anything until a month or so ago when we went to GP (i went in with him at his request and offered to leave after explaining if he'd prefer). He sleeps okay, eats okay and does well in Uni and doesn't have thoughts of self harm so he is at the bottom of the queue for help. He says he doesn't have any specific physical response to his anxiety so they said medication wasn't appropriate.

I have access to an on line counselling service for family members but I can't get him to engage with it. Currently DH taking him to the gym and making him exercise but he doesn't really put enough effort in to get the benefit. We are trying to engage him more about the house, getting him to cook and socialise with us in the evening. he's been on Roaccutane twice which I think has also impacted. Even his texts to me are one or two words. :(

So, the fact he now has no friends and doesn't go out at all and doesn't/can't speak unless spoken to and sometimes even not then, it's hard work to have a conversation as he has no opinions and doesn't ask anything back seems to be fine....Hmm.

DS2 is great with him and will take him out to the pub and they go for lunch and he invited him up to his uni for a weekend, but he has his own friends and wants to spend time doing stuff with them and not worrying about his brother.

And we thought the days when they were babies were hard work!

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milliefiori · 26/11/2019 19:06

I may be wrong, but I understood that SEN students get a £600 bursary towards laptop and additional needs/costs. So they are slow off the mark helping him replace his laptop. It should be a priority, maybe chase this for him.

Can you help him find, road test and download some work management apps? Also ask for a weekly meeting with a mentor/counsellor who can help him with organisational strategies to manage his workload and his day to day planning.

This from Disability Rights UK (on funding) :
Disabled Students’ Allowances (DSAs)
Disabled Students’ Allowances (DSAs) can pay towards specialist support you need on your course. The four allowances for undergraduate students are:

Specialist equipment - maximum £5,684 per course for full and part-time students.
Non-medical helpers - maximum £22,603 per academic year of the course. For part-time students the allowance depends upon the percentage of study in relation to the full-time equivalent course. The maximum part-time amount that you can claim per year is £16,951.
Other and general expenditure - maximum £1,899 per academic year of the course. For part-time students this allowance depends upon the percentage studied of the full-time course. The maximum amount that you can claim part-time is £1,424.
Disability-related travel costs – there are no maximum amounts.
In Scotland there are no DSAs for travel. However, you may be able to claim extra disability-related travel costs from the Students Awards Agency for Scotland (SAAS). You should write to SAAS to make a claim, preferably at the same time as you send in your application for the DSAs. You must send SAAS proof of your disability (if you’ve not already done so) and give details of the additional costs. SAAS may also consider making a 50% advance payment of normal travel costs in certain circumstances.

DSAs are non-means-tested. This means your income or your parents’ income is not taken into account when assessing the level of DSAs you will receive. Previous study doesn’t affect your eligibility to get DSAs. There is also no upper age limit on applying for DSAs. The allowances you receive are only based on the assessed support you need while studying. DSAs do not fund items or costs related to your disability that you would have regardless of whether or not you were studying.

How to apply

In England you can usually apply online for DSAs at the same time as making your main application. You can also download the form from the Student Finance website. All awarding authorities will have the form available to download on their websites. You can apply before you have a confirmed place at a college or university.

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WaxOnFeckOff · 26/11/2019 19:30

Thanks for that Millie - we are in Scotland. Before he started at the Uni I contacted and asked what he needed to do to continue support for typing his exams, we filled in something on-line to the Uni and gave them a copy of his report from the consultant. The next step was then for DS to go to them for an assessment of his needs which is needed for the application for the financial support.

They started asking him to do this over the summer and he didn't contact them and didn't tell me. I only found this out when I contacted them for advise on what laptop to get him. They told me not to buy anything until he was assessed as he could get support and might need specialist software. They then chased him more at my behest and I leant on him from my side.

He only finally contacted them a few weeks ago in a panic as he needed agreement to type his exams. They put that in place straight away and then got him back for a full assessment and emailed him the support form. That's for the application for funding from SAAS. We filled in the bits they said to and DS now has that to email back/hand in but I don't know if he has. I asked him earlier but he hasn't replied. Hmm I'm taking that as a NO.

I've stressed that this needs to be done now so we can sort out a laptop while he is home. He's managed to get his PC connected to the internet now so hopefully that's a start but no doubt he will have lost the memory sticks he took with him too.

I'm sure no matter what laptop they support him getting, i'll end up having to replace it within a year as it will be lost or broken.

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WaxOnFeckOff · 26/11/2019 19:37

I don't know what else they've offered in terms of support. i am sure that they are great, it's him that's the problem.

I've only seen him for two weekends since he went up at the end of August and that's been Friday night to Sunday lunchtime with time spent visiting with his friends whilst at home and long lies in bed for him too, so it's not been enough time to drag out the info without going ott on him and nagging which I don't want to do in the short time we have. Communicating at a distance is all very amenable as he promises to do everything and then just doesn't or just blanks it and doesn't respond.

He's an absolutely lovely guy, kind and honest and laid back. Trying to be hard on him is like clubbing a seal. He does his "cat from shrek" sad face and I can't bring myself to nag at him.

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BackforGood · 26/11/2019 21:58

Trying to be hard on him is like clubbing a seal. He does his "cat from shrek" sad face and I can't bring myself to nag at him.

Grin

What a great description Grin

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milliefiori · 26/11/2019 22:12

Hah at cat from Shrek face!

But really, it isn't his fault. DS2 has SEN. I ignore all the snidehelpful suggestions that he needs to learn to stand on his own two feet and I continue to help him and oversee. Not because he never will, but because it takes him genuinely about ten times longer to learn how to organise himself than it does other people.

He couldn't write his name until he was seven, or tie his shoelaces or tell the time on an analogue clock until he was thirteen. He was just slower to absorb the basics. I had to colour code and bag up all his text and exercise books and the stationery he needed for each class and keep them in a crate in the kitchen with a matching colour coded timetable and homework timetable every single year until sixth form when he started doing the same for himself.

He's now applying to uni and I will carry on helping him loads because he want to and eventually will stand on his own two feet. It just doesn't come quickly or easily. He needs to be shown each individual step of the way and reminded of it several times. So, say, filling out and returning a support form has so many stages to it. He may be 'form blind' (all the black lines and tick boxes sort of jump out at you so the content is tricky to read and you end up putting information in the wrong box then feeling ashamed and crumpling up the form and forgetting about it.)

Stuff like that, I'd start by making a few spare copies of the form and sitting down with a coffee and reading out each line aloud, getting him to verbally answer it and then write it down. May sound babyish but with ADD the hurdles are so challenging. Filling out a form can be quite stressful.

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WaxOnFeckOff · 26/11/2019 23:03

I agree entirely millie and he IS getting a bit better. He takes photos of important things and I message him photos of stuff he needs to keep. It's frustrating as hell as I don't want our interactions to be full of me checking up on him, so I offer to help and then I offer again etc etc. We seem to get there in the end but I find it stressful and invariably it ends up costing £££s more than it should as everything is last minute.

He tells me that he is keeping his room tidier and is now doing what I suggested, eating his meals in the kitchen and then washing up before he goes anywhere else. It's taken a few months but he's getting there. He burnt his pizza the other day as someone told him it wasn't a fan oven so he tuned it up higher.

His flat mates treat him as their pet I think although he is bigger than the rest of them, they are all cooking a christmas dinner but he's been put on cracker duty as they don't trust him with anything else Grin

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WaxOnFeckOff · 26/11/2019 23:09

I think the problem was that he was very bright all the way through primary and also impeccably behaved so none of us really identified that he was struggling. He was always a bit of a scatter jack and messy and clumsy and didn't learn to tie his laces until well into high school but was happy as larry and doing well. Given his motor skills are so low, hospital were astonished that he learned to pedal a bike,(no stabilisers) when he was 2 and a half and that he passed his driving test after about 15 lessons. It took him twice as long as it should to cut a shape out of a piece of paper.

So, a lot of the strategies and helpful techniques that we should have started when he was younger just didn't happen.

We are where we are though so just need to crack on and get him to achieve what he should.

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WaxOnFeckOff · 26/11/2019 23:18

Cat from shrek face - obvs can't do a recent one! but it's only got more skilled...

DCD (Dyspraxia) young adults chaos...
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milliefiori · 27/11/2019 07:42

Oh but he'll get wherever he needs to be in life always because he's SO CUTE!

My dyspraxic ADD DS is now tidier than his brother.

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