Need help !!

A place to talk about your experience of living with Dyspraxia

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Princessfairey
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Need help !!

Post by Princessfairey »

I am trying to find out if there are any support groups around, my 25 year old son needs someone to talk to I feel, he seems to have entered a new faze of his life and I am worried about him, I do talk to him about it but I think he needs someone who also has dyspraxia and will understand how he feels, it has been a very lonely journey always for us, no one since his diagnosis as a child has been there to help us, the system for dyspraxic children is terrible and seems no better for adults .

I would be very grateful for any advise I can get on here, thanks in anticipation Pauline .
Captain_Ludd
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Re: Need help !!

Post by Captain_Ludd »

Hi Princessfairey,

I'm 31 and I've been looking for something similar for years, unfortunately in my area at least there doesn't seem to be much.
There is the dyspraxia foundation but that seems to be mainly for kids and I definitely found that there was plenty of support up until 18 ish and then your on your own
I also felt quite "lost" for a while so I can kind of understand what your sons feeling, that why I come here I can actually talk to people who get it.
I've been to a couple of support groups for other ND issues like autism and dyslexia but they don really seem to know about dyspraxia which is quite sad and isolating, even among other N.D's we seem to be quite niche.
I can only make a couple of suggestions:

1.) Tell your son about this place it certainly helps me.
2.) If your feeling adventurous try setting up your own group.

Hope this helps :) , and tell your son there are people out there that go through the same sort of thing, he's not alone.
Creative
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Re: Need help !!

Post by Creative »

I'm 28 and am also looking for something similar.

I'm from Norfolk and there isn't anything for adults in my area. I did belong to an Aspergers support group but this wasn't helpful for me so I stopped going to it.

Going on here helps and you can make friends. You can message people and I have made a really good friend with dyspraxia this way who I now chat to a lot on facebook. Facebook also has lots of Dyspraxia groups and several which are just for adults.
Captain_Ludd
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Re: Need help !!

Post by Captain_Ludd »

You know following this thread I've been doing a bit of Googling about Dyspraxia research and support (which is kinda bad cos I'm supposed to be writing a report on something totally different :) ) and I've found the vast bulk of stuff really is aimed at kids and teenagers.
Does any body else find this a little depressing? its almost as if the whole world says: "Dyspraxia is a developmental disorder when you get to 18 your an adult therefore you've stopped developing so we don't bother".
OK so maybe that's major generalization but I think there's some truth in it, probably also something to do with the fact that Dyspraxia as a diagnosis in its own right has only been around for about 25 years, but still there doesn't seem to be much research going on targeted at people over 18-20, or is it just me? :S
AlleyCat
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Re: Need help !!

Post by AlleyCat »

its almost as if the whole world says: "Dyspraxia is a developmental disorder when you get to 18 your an adult therefore you've stopped developing so we don't bother".
I agree, Captain Ludd. There is nowhere near enough awareness and support for adults with dyspraxia. It's ironic that I've had serious problems in employment and higher education due to dyspraxia, yet I wasn't even diagnosed until adulthood. I was basically only diagnosed once things started going wrong on a teaching course, which makes me angry as I knew things weren't right when I was secondary school age but didn't get taken seriously by my parents.
Moot
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Re: Need help !!

Post by Moot »

I agree! Thank goodness for this forum and the Dyspraxia Foundation section at least having some stuff for adults.

As to the initial question, maybe your son could join up here as a start? There'd certainly be support, even if it's not necessarily localised advice, as well as people of similar ages, like myself. I haven't really found any extra help so I can't advise you there.
Hopefully not making too many moot points... heh... *ahem* :D
Princessfairey
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Re: Need help !!

Post by Princessfairey »

Thank you so much for all your replies, everything you say is true of my son, no funding is the favourite, this of course means that no one really takes it serious enough!! How bad is that when they have a medical term for it?

They don't seem to understand that when a dyspraxic child grows into adulthood he is expected to run his own life, no longer has the control of a parent, surely this is when they could do with some real help,advise and support.

My son is lucky because I understand what's going on and try t be there for him whilst at the same time allowing him total control of his life.

It is very hard for other people such as lecturers and particularly employers, to understand this condition, plus my son doesn't like telling people he has it, which is his decision.

There must be so many people out there who suffer in silence not knowing where to turn for advise or help, I feel it really is up to Dyspraxic sufferers to take control and form their own support groups, because no one else will.

I have told my son to join this site where at least as has been said, he will be able to chat here to people who know exactly how he feels. Many thanks again for your replies Pauline
Princessfairey
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Re: Need help !!

Post by Princessfairey »

Captain_Ludd wrote:Hi Princessfairey,
Thank you I have given my son the site to join and really hope he does, just be nice for him to chat to people,like yourself who really understand, wishing you all the best Pauline
I'm 31 and I've been looking for something similar for years, unfortunately in my area at least there doesn't seem to be much.
There is the dyspraxia foundation but that seems to be mainly for kids and I definitely found that there was plenty of support up until 18 ish and then your on your own
I also felt quite "lost" for a while so I can kind of understand what your sons feeling, that why I come here I can actually talk to people who get it.
I've been to a couple of support groups for other ND issues like autism and dyslexia but they don really seem to know about dyspraxia which is quite sad and isolating, even among other N.D's we seem to be quite niche.
I can only make a couple of suggestions:

1.) Tell your son about this place it certainly helps me.
2.) If your feeling adventurous try setting up your own group.

Hope this helps :) , and tell your son there are people out there that go through the same sort of thing, he's not alone.
nickye
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Re: Need help !!

Post by nickye »

Hi Princessfairey
I'm sorry to hear your son is having these problems. I know it's difficult for adults, as I'm 44 now and have just been diagnosed (although I've gone round in circles and had to go privately in the end).

I've found the Dyspraxia Foundation local group really good - if you go on the website www.dyspraxiafoundation.org.uk you can click on local groups and see if there is one in your area. Just being able to talk to other people has been good.

I went to see a specialist teacher in the end who assessed me and she has given me some things to do to help me improve my co-ordination.

There are some good books around "Coping with Dyspraxia" by Jill Eckersley and one by Mary Colley which I think is called "Living with Dyspraxia". I've always struggled organising myself, and this give you some good tips.

I do hope you can find some help. It seems a shame there is not more available on the NHS but I've just seen that the Dyspraxia Foundation has been given a lottery grant which I think will help set up their help line again. It would be worth giving them a ring.

I hope this might be helpful, and I think this website here is mot definitely helpful! I've had depression and anxiety for years, but since coming on here things are a lot lot better! I just wish I'd known about this when I was younger - I'm married now and my daughter is 10. I couldn't understand why I struggled so much when she was small (I know it's difficult for everyone with a small baby but I always found things like putting up the pram, organising my day etc really hard). My life has improved a lot since getting the help. Although I did have to pay for an assessment a lot of the things that help are either free or fairly cheap (like books, on-line games to help co-ordination etc).

Good luck to you and your son. It is great he has a Mum to support him. Sometimes it's hard to get people to understand that you have a problem at all, so at least you are on the right track. :)
Captain_Ludd
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Re: Need help !!

Post by Captain_Ludd »

Princessfairey wrote: It is very hard for other people such as lecturers and particularly employers, to understand this condition, plus my son doesn't like telling people he has it, which is his decision.
I can understand this cos I was the same myself sort of "Just carry on if I Ignore it it might go away, don't want people thinking I'm useless".

But with all due respect to your son I found it to be a really bad decision, from his personal stand point how can people help if they don't know ? They will end up getting annoyed and impatient because they don't realize which will only reflect badly on him.
Also for me at least when I started admitting it to other people I started to except myself a little more which helped me a little with the anger and frustration, I'm not saying use it to open conversations or anything but be open and honest about it (especially at job interviews etc).
As I've said many times (and I'll keep saying it til the world listens :) ) , we have (what the world at least perceives to be) a disability, a recognized neurological impairment and that aint gonna change, so the best we can do is try and except that and make the world more aware.
Any how Ill get of my soap box now, here ends rant :)
AlleyCat
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Re: Need help !!

Post by AlleyCat »

As I've said many times (and I'll keep saying it til the world listens :) ) , we have (what the world at least perceives to be) a disability, a recognized neurological impairment and that aint gonna change, so the best we can do is try and except that and make the world more aware.
Captain_Ludd, you're right that we should be able to disclose, as we have a neurological condition which isn't somehow magically going to 'go away'. However, when I've disclosed dyspraxia in the workplace I've been treated in a patronising way by line managers, who incorrectly assume that it means I shouldn't be given any kind of responsibility, so it has then put me off disclosing in future. Dyspraxia isn't out there in the public awareness enough yet- it's still got a long way to go to catch up with awareness of dyslexia.
Lovethyheart
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Re: Need help !!

Post by Lovethyheart »

I wish there was something like this around, but sadly the system just doesn't think about dyspraxics at all. Ever since secondary school I realised that I couldn't do things like everyone else, I knew something was wrong, and I was constantly getting told off for my presentation and lack of effort. It was disheartening that no-one thought to test me. I eventually paid for a private test in my second year at uni, after my mum had read up about the disability, and realised I had it. Now everyone mocks me when I explain that the reason I'm struggling to do something is dyspraxia, they think I'm using it as an excuse, and have no idea just how much it affects my life. My main problems are social, I'm scared of telephone calls, and I can't go round other people's houses in case I break things. I would love to be able to be a part of a dyspraxic group who just get to rant about how much it sucks!
Captain_Ludd
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Re: Need help !!

Post by Captain_Ludd »

However, when I've disclosed dyspraxia in the workplace I've been treated in a patronising way by line managers, who incorrectly assume that it means I shouldn't be given any kind of responsibility, so it has then put me off disclosing in future.
Yeah I agree it is kind of a damned if you do damned if you don't scenario, that's why I trend to always be up front on the applications and at interviews, that way if you get the job there more likely to take your disability into account and if you don't you haven't lost much cos there probably not the kind of employer you'd want to work for anyway.
mattie
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Re: Need help !!

Post by mattie »

"I am trying to find out if there are any support groups around, my 25 year old son needs someone to talk to I feel, he seems to have entered a new faze of his life and I am worried about him, I do talk to him about it but I think he needs someone who also has dyspraxia and will understand how he feels, it has been a very lonely journey always for us, no one since his diagnosis as a child has been there to help us, the system for dyspraxic children is terrible and seems no better for adults .

I would be very grateful for any advise I can get on here, thanks in anticipation Pauline ."

Hi. I'm 30 and have dyspraxia. I would be more than happy to chat to him if you like.

I wish you (and your son) luck.

Mattie.
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