Telling people you have dyspraxia

A place to talk about your experience of living with Dyspraxia

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Jambo
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Telling people you have dyspraxia

Post by Jambo »

New Topic for a new member.


Just a question, it may have been asked before if it has, forgive me.

What is the normal reaction you have come across when telling friends, family or even strangers about your condition?

Also

What have the reactions you have had when telling work colleague's or employers about your condition either in general or in relation to your work?

I'm trying to gauge how other people have faired when talking to people about their condition.

Lets just say mine have been less than pleasant when telling Co-Workers & employers, even friends & acquaintance.....

I haven't had a good experience telling people about dyspraxia, will go into more detail at some point, I want to hear your stories though

Many thanks

James
Jim
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Re: Telling people you have dyspraxia

Post by Jim »

There's always a risk of alienating people (who in turn alienate you) when you tell them of your Dysbraxia.

I suspect that is is due to:

(a) Most people have simply never heard of Dysbraxia and will have little (if any) idea of what it is.

(b) When you describe some of your symptoms, they'll think you're making it up because if we're honest everyone displays some of those traits in very small ways anyway and hence it's easy for people to overlook and dismiss.

and..

(c) People are very good at stereotyping and most people's idea of learning disability would default to the most visibly obvious, e.g. Downs Symdrome.

Therefore, I'd agree that many people are predisposed to dismiss Dysbraxia as no matter how you explain it.. when you listen to it from their point of view it does simply sound like an excuse.

--

However, this shouldn't be a reason to hide it and not tell people. As far as I'm concerned if someone doesn't believe you then that's their problem. I'm pretty open to my work colleagues about my Dysbraxia and how it affects me. I doubt many of them actually believe me because on the face of it I don't look like the stereotypical view of a person with learning difficulties. They know that I am as capable as them and hence it's actually difficult for them to accept. So many of them are quite dissmisve and ignorant of the difficulties that I do have because they aren't immediately visible. I don't feel deliberty discriminated against.. But I do sometimes feel that people don't take account of my difficulties and often ask too much of me, in the way of giving me too many things do at once.
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Rebecca
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Re: Telling people you have dyspraxia

Post by Rebecca »

Most people don't seem to be that bothered when I tell them, just kind of like 'Oh really?..' sometimes people ask questions about how it affect's me (usually to work out if its going to affect how I interact with them I think). I also only really tell people if I have to, such as if its obvious and I need to explain why I'm behaving a certain way, like If I'm feeling stressed out and anxious or going through a bit of a depression I sometimes get really bad migraines that make me pass out and throw up, so I'd explain it to my manager at work just for 'health and safety' reasons I suppose.

The only negative response I've had was from a guy I was sort of seeing (literally up until this afternoon). He wasn't at all happy with how slowly our sex life was progressing. I really hate being touched by anyone, it's taken ages for me to get comphy with him so I can see why he found it frustrating and seemingly pointless while I was being awkward and clunky. But he wasn't even trying to understand, (like Jim said, I think he thought I was just lazy and making it up) and his tremendous nagging and lack of patience was putting way to much pressure on me and It was starting to affect the rest of my life. So I decided to pull the plug. (if I'm honest it was sort of mutual, but he's not on here to defend himself ) :)

Bex x
Jambo
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Re: Telling people you have dyspraxia

Post by Jambo »

Oh that's horrible, well as you know, you did the right thing in cutting him loose.

A dead weight never helps any one......apart from power lifters. Some times guys just have no tact at all, all though he might not have been after just on thing, he obviously wasn't willing to wait around until your where comfy enough for it to happen. Say's it all about his character really - Some times it's better finding out now rather than later down the line.

I only really every told people I had DCD & not dyspraxia - I cannot remember when I told my girlfriend I suffered from dyspraxia. I think she was nonplussed by it as her, like me didn't know a lot my condition & how it affected me & how I react with others around me. I think she understands a bit better why am the way I, I don't mean to be completely oblivious to every thing.....I just am.

Basically like the majority on here, I have found people believe it is an excuse for why I am the way I am & what I do. Most have made negative comments about it & don't believe the condition exists.

They think I'm using it to excuse myself from what ever mistake I have made, I hate the thought of it being and excuse I see it more as an explanation as to why I have or have not done some thing.
This also doesn't help either because I hate having to explain myself to some one who I can already see thinks its bullshit or that I'm lying.

3,000,000 people in the UK can't have some symptoms of Dyspraxia though its though only 2-3% are considered severe about 60,000,000

My figures as fairly conservative, If I was going for the extreme statistics I have found, you could double those figures.

Three things, A **** tonne (Yes it really is a unit of measurement :P) of people are going undiagnosed, the condition really isn't as prevalent as they believe OR these stats include people who suffer very mildly that it is pretty much unnoticeable in the running of their day to day lives?

I think either one of those could be true or a mix of all three, just this forum has being going 6 years & only 1000 members.

I could start up a fan forum for the atrocious film Barb Wire & I would have more than 1000 members

I do believe with the rise of social & mass media reporting on different conditions & illnesses combined with the power of the internet has lead to a rise is self diagnosis.
I started working as a chef when I was 16 to so I money for college, once in a blue moon some one would ask about a wheat/gluten free option because that person was a celiac.
Last year during the summer when I finished as a chef in one day I had OVER 30 people ask for that option it was insane most of them said they THOUGHT they might have an intolerance. 95% of people who asked had never been diagnosed with an intolerance or celiac disease.

I would love dyspraxia to be recognised more but I fear that will lead to an influx of people misdiagnosing themselves & people who don't really suffer from it using it as a shield or an excuse.

It's funny because when I explain to people who occasionally want to know what dyspraxia is & how it effects me, they try & the condition.
When I mention a certain symptom they boldly exclaim 'oh I do that all the time'......& so on an so forth. As if It in that some way by them saying they suffer from one or two minor symptoms that it's going to make me feel normality or that they can play down my condition as not being that serious.

After going through the list of symptoms, I said THINKING you suffer from one or two of those symptoms doesn't seem bad.....Try adding them together & that you don't once or twice walk into a door frame or kick steps on a set of stairs but that its happens a couple of times a week if I'm lucky or a couple of times a day if I'm not.

I don't want them to Identify with the condition or me for that matter, acceptance & acknowledgement is all I would like to garner from explaining them the condition.
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Re: Telling people you have dyspraxia

Post by AlleyCat »

In my experience, it seems I can't win whether I disclose or not. If I don't disclose (especially at work on or courses), I get people complaining about things which are related to me having dyspraxia. Usually, people don't have the decency to discuss anything with me in a constructive way early on, instead bitching about me behind my back- what then happens is that I find I'm suddenly pushed out of the job or off the course without having been given the chance to explain myself (or even to improve, if that's possible).

I've talked about this before, but a particularly frustrating experience of disclosing my dyspraxia at work led me to be put off disclosing to employers after that. I was given a job as a TA in a secondary school, with the SENCO who offered me the job having been informed about my dyspraxia. Her idea of 'managing' me as an employee with dyspraxia was to make me feel patronised and humiliated by telling me not to do things which I can't really stop myself from doing, as they are caused by my dyspraxia. For example, she told me that I mustn't speak in a loud voice, which is of course a symptom, as anyone who has taken the time to research dyspraxia on the internet will know. I was also bitched about in a meeting (from which I was absent) because I can have a tendency to interrupt- again, this is of course another symptom of dyspraxia.

Jambo- I understand why you think people might use dyspraxia as an excuse for their own shortcomings (whether they have it or not) if the condition was better known, but if people don't understand that there is a genuine neurological reason for people with dyspraxia doing things which others may not be happy about, then they will continue to cast judgement on us and not give us the chance to fulfil our potential.
Rebecca
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Re: Telling people you have dyspraxia

Post by Rebecca »

Its not so bad really, I'm a tough cookie :)

I actually don't mind that not much is known about dyspraxia, it means when I explain to people, employers e.c.t, I can just explain about the bits that are relevant to me and usually just as and when they occur rather than all at once on the first day (hey, if the job doesn't involve eating petit pois why won't bother letting my new boss know that it makes my feet cringe?). At school they had a brilliant special needs department, which was good, but on the other hand I kept getting help that I didn't need but didn't really get much of a choice, like most things at school they cater for the whole class. I had not many problems with reading or writing, mine kind of manifests it more physically, and having someone read the questions aloud during an exam was really off putting. I know something like that s'not going to happen at work but sometimes when people have too much information they assume as to how much slack they need to cut. I'm very independent and wouldn't want anyone to think I couldn't do something or go out of their way so make special arrangements for me when there wasn't a problem in the first place. Like you said, there's 1000 people in this forum, but my boss only needs to work with me, not all of us.

Does that make sense?

x
Tom fod
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Re: Telling people you have dyspraxia

Post by Tom fod »

Hi James

Welcome to the forums (or fora) I see you're from 'down the road' in the Wye Valley. Good to see some more local people!

In my experience ost people seem to be What?!
My current managers are aware of it now after I was referred. I had an Access to Work thing but I think it was too late as I already have my coping strategies ingrained and you sadly can't halt change which is what causes me most of my stress!

I'm really not sure I'm that comfortable with the idea of disclosure I want people to see my abilities and qualities on a good day. I prefer to hide behind my visual impairment if I'm honest as it's more readily understandable.

I've been having a go at rewriting my Disclosure document to try and arrive at something I'm more happy with but would rather people take the time to accept, understand and appreciate other's diferences. Sadly it often seems a bit much to ask of a lot of people in the general sense.

Tom
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Captain_Ludd
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Re: Telling people you have dyspraxia

Post by Captain_Ludd »

Hi Jambo,

Most of the time when I say something people a pretty sort of indifferent mainly because they have no idea what it actually is.
I've lost count of the number of times I've had the response "Oh, you mean dyslexia", somewhat depressingly this was the response I got when I started attending a local ND support group a couple of years ago #-o .
When I explain I'm pretty sure a lot of people don't even believe me and tend to just humour me because my outward signs are minimal.
I've never had an overtly negative response but I have had a few people who have gone the other way and started being overly protective I know they mean well but god its annoying when people start trying to rap you in cotton wool or treat you like your 3 not 30.
toxic_ange
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Re: Telling people you have dyspraxia

Post by toxic_ange »

At school I was labeled as lazy and uncooperative.

I finally got tested at college - they thought I had aspergers... #-o

Then when it turned out I have dyspraxia they basically gave me no help, but hey I got to use a computer in my exams, so they were helping right??

Then the second college I went to (i failed the first time round odd that) I actually got asked by the SpLD advisor what it was, and had to take in my official report thing i got fr :-# om the educational psychologist to prove I wasn't lieing. I managed to pass that course, cause it was 100% coursework and I got my step dad to help me, he is an aspie learning difficulty specialist (as in he has aspergers) so he managed to help me through it all. :banana:

Finally I have been accpeted at uni but they have decided to put me on the january intake so i can start as a mature student and therefore get more support - apparently it will help me get more attention from the lecturers. :banana:

This meant i am stuck for 7 months between college and uni. I had to go on JSA. Which has been a nightmare, I told them I have dyspraxia, and basically got told that it didnt matter, there was nothing they could do beyond what they already were, even though I KNOW they have specialist advisors. ](*,)

luckily i have found a job recently, where oddly enough me having dyspraxia will be a help, Im now a support worker in a sever learning disability residential home. as a result im getting full support from all of my colleagues, and I have empathy for the residents, its probably the only job where you can walk in and say "im having a wobbly day - is it alright if i dont do x" and they are absolutely fine with it. So really its all down to where you are and who it is.


sorry for all the text..
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Tim G
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Re: Telling people you have dyspraxia

Post by Tim G »

the commen reaction i get is what is dyspraxicia i havent heared of it - i start by saying that in some ways its simmiler to dyslexicia (as most people seam to understan more about this) but i explane that there are a lot of diffrances and poor cordation is one of the main aspects of dyspraxicia as well as the vartious mental aspects (i give a overview of thies things) i then talk about how it affects me and explane that it is diffrent - dyspraxics will experance diffrent symptions - no one is exactly the same

some times people have heard / know about it so thats good

others know about ADHD, aspergus etc and i explane the simmilities and diffrances between that and dyspraxicia

as a rule of thumb i do disclose but when i feel its approapte - i do temp work through so i have dislosed to the agencies i work for but only when i feel its approapte / nessary with the companies i work AT as they are not the employers - the agency is and i dont want to loose temp contacts / work if they dont like the fact i am dysabled then they could just say we dont need you and then i have lost work but forantly it works both ways - if i cant or dont want to work at a place then i can just talk to the agency about it.
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Tokis86
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Re: Telling people you have dyspraxia

Post by Tokis86 »

I'm new here but here's my 2 cents;

1. I've gone through almost my entire life telling almost nobody that i have Dysphraxia.
2. Am i worse for wear for this? IMO no, because while i show symptoms i also try to control & suppress them. I want to fit in as a normal person (even if it is tougher for me) because i want people to see me as "Liz, regular joe" rather than "Liz, that girl with that weird Dysphraxia condition".

Most people have never heard of Dysphraxia let alone know anything about it. Most people aren't interested in it. But what people will pick up on is that it's some sort of learning difficulty or disability, and that isn't a positive thing. It doesn't make you more attractive or more likeable. I don't want people shying away from me or looking down upon me because they've been told that i have Dysphraxia and have suddenly come to the conclusion that something is thus psychologically wrong me (even though nothing really has changed and i'm still the same old me).
While i'll be happy to correct any misinformation about the condition, i'm also not about to go screaming that i have it from the rooftops.

I want to fit in, i don't want Dysphraxia to rule my life.
lauraECFan
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Re: Telling people you have dyspraxia

Post by lauraECFan »

The usual reaction I get is "What is dyspraxia?" and when I describe what it is they normally just accept it (except for a support tutor in my secondary school who thought I was making it up as an excuse for my forgetfulness and messy handwriting). Other than that everyone else has just accepted it and not questioned it further thank god lol. One of my best friends who I met on my course asked me what it was when he saw it on my form and I explained it and it sort of kickstarted our friendship :)

I believe people who believe that it is made up just have their heads stuck up too far up their a**e to truly listen to what we say to them and dismiss it as an unwanted burden. People really should be made aware of the fact that dyspraxia truly does exist and that we are not stupid, slow, clumsy or forgetful on purpose maybe there should be more programmes, books and similar stuff made to help it become more well known then hopefully we should then become more accepted and not branded the above.

Theres my thoughts on telling people who do not know of the condition

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Re: Telling people you have dyspraxia

Post by Jim »

Perhaps some of the people who dismiss it as made up are really trying to cover up their own inadequacies. For example if your'e better than them at something and your dyspraxia would normally by rights give you a disadvantage in that area... Then in realty you're showing that person up. And people don't like being shown up, especially not by people who have conditions which can affect their ability.

It's like an athletic sprinter... They're not going to be chuffed to be beaten by someone with false legs.

For me... Although my dyspraxia blows huge holes in my confidence and self esteem... It doesn't stop me being clever and utilising my strengths in the right areas. And I take great pride in making supposed intelligent people look rather daft simply by applying basic sense which when used correctly does the job every bit as well as flashy cleverness. But pull that off too successfully and people are less willing to believe you have a disability.
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