I need your stories on the difficulties of dyspraxia

Getting assessed for your dyspraxia, getting help, disability allowance etc.

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DavidAndrewJames
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I need your stories on the difficulties of dyspraxia

Post by DavidAndrewJames » Fri Feb 10, 2012 5:51 pm

Hi all

I am writing as someone who was diagnosed with dyspraxia when he was 30 years of age. Since being diagnosed I have become very much aware of the lack of assistance available to people with dyspraxia. I, like many other dyspraxia sufferers, was not diagnosed as I child and spent my childhood education being bullied (not just by children, also by some teachers) and being labelled as stupid and dull. I went straight to work after leaving education and found holding employment difficult as I found certain tasks I had trouble with because of my undiagnosed dyspraxia, especially those where coordination was needed. When I left school I was not able to read or write to an adult level and built up these skills myself after I had left education by reading childrens novels until I gradually could read adult novels. I was made redundant from the factory where I worked in 2005 and decided to apply for a Access to Humanities course at my local college and grab the opportunities that were taken away from me as a child. I completed this course and went on to do a degree at university. I noticed that I struggled with certain elements of my course and made an appointment at the Education Centre. They referred me to an Educational Psychologist who diagnosed me with dyspraxia, dyslexia and suspected dysclaculia.

I have briefly told you my story because since becoming diagnosed I have become aware of the lack of help and assistance for people with dyspraxia. I am aware that many children still go undiagnosed and others are never diagnosed. I am also aware since leaving university that assistance for adults with dyspraxia/dyslexia is non-existent and there is no existing help for people with conditions such as mine to find and keep work. Because of this I have recently written to the Prime Minister, both opposition leaders, Welsh First Minister and my own MP (Peter Hain). I have heard back from the Prime Minister making excuses and refering me to the Welsh Assembly. But I have also heard from Peter Hain who wants to meet me to discuss this issue further and possibly bring this issue forward in parliament.

But I need your stories and ideas!

I already have my own ideas of what is needed for dyspraxic people to live a full and equal life, but I need yours. Please let me know about the difficulties you have had with the condition and the lack of help/assistance available. Please let me know about any difficulties with getting you or your children diagnosed with the condition. Please let me know about any troubles that you may have had with your childrens schooling, Including bullying because of dyspraxia. Also let me know any other ideas that you may have to help dyspraxic people lead an easier life in the future. I will then be able to pass on your stories, ideas and information on to my MP who will hopefully take up this issue in parliament.

Many thanks

D A James

megamum
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Re: I need your stories on the difficulties of dyspraxia

Post by megamum » Mon Mar 05, 2012 3:20 am

Hi
My daughter (who will be 24 this year) was diagnosed with boarderline clumsy child syndrome at about 9 years of age. She has enormous difficulty holding a job for any length of time, and has been sacked more than once. Recently she was sacked for venting her frustrations on a social networking site. I have tried to advocate for her over the years, and while I love her dearly it can be very frustrating, and I sometimes wish someone would take over the role for me.
We live in South Wales, and I wonderd how you got your diagnosis? I have been trying to get one for my daughter, but the GP has said they wont refer, and the LHB doesn't seem to think it is something they are required to pay for. I know it can be had if you pay privately but it is very expensive and I am unsure what the benefits will be if we go ahead.
I had a fall during my pregnancy , and also had to have a blood transfusion (at the time I was more worried about her getting HIV from the blood than anything else). The fall was down a flight of stairs when i was 18 weeks pregnant. I have often thought that either of these events may have caused her problems.
She had trouble walking as a toddler and a strange gait when running, but as she also has an hereditory bone condition more emphasis was put on this. Her primary school teacher called me into the office on one occasion to tell me she thought my daughter was having small epileptic attacks,because she said she would go off into a dreamy state, almost daze. I always knew that i had to address her by her name several times before she would realise i was talking to her.
I beleive she is on the Autism specrum as well, as she will remember films in minute detail, the names of all the actors and quote what else they have been in (the minor roles I mean). She gets angry when plans are changed, upset and miserable at her inability to fit in with what society expects of a young woman her age, adn i know that she has had suicidal thoughts in the past.
She would try so hard t please that she would sit up until gone midnight when she was in secondary school trying to complete her homework. We even went to a parents evening and asked if eveyone had as much homework as her since she seemed to take so long to do it. The teachers i remember were horrified and said it should only have taken her half an hour at most, (my daughter would sit over it for hours on end, or leave it then come back over and again).
As a mum of two and probably post natally depressed for a lot of their younger lives, I am sure i failed her in not pushing harder for diagnosis, but with the bone condition as well (which we were told may cause malignant tumours) I think I missed the most important part of her problems altogether. It later transpired that she doesn't have the more serious variation of the bone condition and all that worry about Cancer could have been avoided.
I do know, however, that after a particularly unpleasant episode with a consultant, we decided not to take her anymore, she had develope psoriasis all over her legs, which was very painful and it was at this point that i thought she was worrying herself and we needed to take the stress away(she was about 10).
For this reason we didn't see anyone again for about 8 years until she wanted to go to university. She had a full assessment and was given a digital voice recorder a chair pc and laptop, but no scribe until the second year by which time she was really struggling.
In hindsight, what she needed was a scribe yes but a mentor and full time support would have been more helpful (and of course costly) as she needs to be able to access help and guidance when she needs it not when it's available as by then she's for gotten what she needed help with, and already made the damning mistakes.
I want my daughter to have the chance to live independently, to have the support and understanding she needs, and for he to feel valued. She is an intelligent person, who is creative, but socially she just can't play by society's rules, she blurts things out, she cant see cause and effect, she gets confused loses things, cant time manage, cant prioritise, becomes fixated and obsessive, hoards everything, is so very vulnerable when it comes to trusting people with her emotions, with financial affairs, and with relationships. I worry who she will turn to when i am not around, and who will employ her. If she can't keep a job, will she even be able to have benefits to support her. She has a lot to give, she just doesn't fit and I am exhausted trying to help her.Shedid have a referral to a social owrker at one point, who did almost nothing, then closed the case without even tell her. If you don't have a physical dissability or one that can be seen it's like banging your head on a wall. I am trying to claim DLA for her, but she doesn't fir the questions. I tried recetly to get her an advocate, but there is a two month waiting list.
I wish you all the best in your endeavours to highligh this condition, and maybe you will one day make things easier for my daughter and all the others like her that sociaety and the NHS refuse to recognise.

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Re: I need your stories on the difficulties of dyspraxia

Post by BinaryBovine » Mon Mar 05, 2012 10:54 am

Hmm, there's a lot to talk about here from both posts. I can see both of you are struggling just to have dyspraxia recognized and taken seriously.
When I was diagnosed it was because some of my teachers recognized a few problems with how I was getting on at school, particularly after a school trip which involved a lot of physical activity and out door sports. It was thanks to them being so attentive that my dyspraxia was eventually diagnosed. I think had they not said something to my parents, it would have gone undiagnosed as my parents didn't want to accept that there was really anything wrong with me. I understand what you mean David when you say people wont recognise something they can't see is physically different. Sometimes I wished I had no legs or something instead so that it'd be obvious why I was different to other kids my age- at least people can understand something like that.
There's a very good book out chronicling various kids problems with dyspraxia and their experiences with it, its called 'Caged in Chaos' I recommend it to both of you. It was written by a dyspraxic, with tales from other dyspraxics, for dyspraxic people and their families, and includes personal accounts of peoples troubles with the condition and how they cope. David I think you in particular will benifit from the personal accounts in there- and the author is on another forum for dyspraxics and can be contacted through there. The book is sold nation wide now at most good book stores. :)

As for getting a diagnosis- yes this is hard. I don't remember the whole process but I know I had to see my GP, who refferred me to a hospital, which looked at my lax ligaments, which referred me to a physical therapist for exercises to help my tone and coordination, I also had a visit from an occupational therapist and lastly a psychologist to get an official diagnosis. The psychologist was the important part, without his visit, and the test he gave me I wouldn't have gotten extra time for my exams- the NHS wouldn't refer me to him for some reason, and we had to pay for the visit and test out of pocket. This was a bit unfair, even the psychologist thought so.

By the way, did you know there was an effort to start a national Dyspraxia awareness day some years ago? Unfortunately it didn't take off because that day of all days was the day of the London bombings and terrorist attacks- so the news was focused completely on that that day and dyspraxia never got a mention. Damn terrorists!
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Re: I need your stories on the difficulties of dyspraxia

Post by Shadwell » Wed Mar 14, 2012 12:23 am

I was diagnosed at the age of 10, but didn't find out until I was 30 in 2006 / 2007 as the gp at the time kept insisting there was nothing wrong with me.

- The Job Centre was a laugh!! they basically said get lost, but not in so many words.
- I was assigned a social worker at the age of 10, and finally met him when I was 19, and he said what do you expect me to do your too old for my help!!
- Always picked on at school mainly by english teachers due to the speed of my writing, a few others picked up on it, but let me do the work near enough at my own pace, but didn't make it so obvious to the class.
- I would say learning to drive a fair bit, as my father was always pushing me out of my sort of comfort zone, like we needed to get there yesterday! even 0.5 mph he would complain about. and how late I left braking, and changes to speed limits, even though the car couldn't cope some of the time!!
- my hand-eye co-ordination is nowhere near the best example as things take 15-20 times longer to write a word than other people in my class.

I think going through school, and all the pressures from the teachers was the worst though, and by the time I reached College age, then things started to relax a little.

but the worst thing is renewals for benefits, as due to my skills I could never fill out the forms, and went through a really bad patch whereby I was living on £14.80 a week at one stage from £100 a week. but since then got a really good support worker to work with me, and we have got my benefits back again now, but that is after many years of struggling on next to no money, dreading bills coming in, and hating shopping because I knew I never had any money to make ends meet, let alone getting what I needed like food.

these are my main concerns is my support worker has signed me off his case notes, and even though I can still contact him, the thing I am not looking forward to is the fact of what when he moves, or when he retires, as there was a support worker from the same firm, that this support worker taken over from, and he never helped anyone apart from getting them, and myself into a huge debt. like the waterboard said I owed them £800 for water for a 2 person flat. and they set out the repayments, and their repayments were most of my money for several months. it was so bad, I was over my parents place most days for food, as I couldn't afford food for myself.

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Re: I need your stories on the difficulties of dyspraxia

Post by Osymandus » Wed Mar 14, 2012 10:48 am

Hi All

I was diagnosed when i was 33 and in the last 3 years been helping out with other adults to try and solve this . There are plenty of groups now springing up and on Facebook run by people who have been doing this for a while as well , so don't think you have to reinvent the wheel :D

https://www.facebook.com/groups/154612411220645/

https://www.facebook.com/groups/DyspraxiaFoundation/

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Re: I need your stories on the difficulties of dyspraxia

Post by ALADDIN » Thu Mar 15, 2012 9:11 pm

I was told I was a clumsy boy, as a child, but it is not dyspraxia. The diagnosis is rubbish and meaningless.

Nothing happened.

I was told that I had dyspraxia, 10 years ago, aged 23, after attending speech therapy. No diagnosis, information on dyspraxia in general and derived from the Dyspraxia Foundation. I did not understand the implications of having dyspraxia.

I was told I had aspergers, and someone from my school thought I may have aspergers. I was a non - standard diagnosis of aspergers traits/autistic spectrum disorder. I have very mild aspergers traits/borderline asperger. I am very high functioning.

My dyspraxia is more the severe than my aspergers traits. I thought my problems were aspergers but having attended DANDA in 2008, I realised my problems are dyspraxia related.

I have a degree, PGDip before I had knowledge of my neuro - diverse conditions. I have a Professional qualification.

I can work, but I cannot obtain suitable long term career related jobs, my longest job has lasted over 1 year in a call centre. I have had other temporary/casual jobs.

Support of aspergers is tailored towards full blown severe aspergers.

My DEA and the rubbish have always been a waste of time.

I passed my driving test after several attempts !!!

I suffer from anxiety and depression since the age of 15. I attended a high flying posh school in Surrey. My teachers were not happy due to my poor drawing skills, occasionally poor hand writing. My teachers were not pleasant to me including the pupils. I was never good at sport. I think I had problems as an undergrad with change, learning style and revision.

I hope to get a private diagnosis.

The information given in the media is weak, patchy or non - existant, especially for adults.
Last edited by ALADDIN on Thu Mar 15, 2012 10:27 pm, edited 2 times in total.

Lulu27
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Re: I need your stories on the difficulties of dyspraxia

Post by Lulu27 » Thu Mar 15, 2012 9:49 pm

I was diagnosed with clumsy child syndrome at the age of 7 I am now 35. I was lucky my primary school teacher had a son with the same problems and told my Mum to take me to the doctors. From anout 7 to 14 I had physiotherapy and occupational therapy to teach me how to tie my laces, peel potatoes and catch a ball all useful skills! From age 14 I have had no support.
My GP has me on my medical notes as being dyspraxic but I have never been offered any help since the age of 14.
I suffered from depression and bulimia from 15-19 and received CBT but it was never linked to my Dyspraxia and I used to self harm.

I have a good job as a manager but in the past year have been suffering from work related stress and depression I am now getting some help and advice in relation to my dyspraxia from a specialist which my company is paying for.
I struggle with communication I cannot tell when people are joking I have problems with working in groups I am easily distracted and I have poor impulse control I talk when others are speaking. I struggle to make friends and I am happier by myself.

I am married but we have no children as I am afraid they will be dyspraxic and knowing what I went through as a child bullying by other children and teachers I would not want a child of mine to suffer that. I feel that dyspraxia afffects all areas of your life and I find it depressing not being any good at anything. I have low self esteem and I feel that I only have a good job because I have been there a long time and I know the job I have no managment skills and I hate managing people.
I live in England but I still think it would be a good idea to meet with the Welsh MP as if we can get the issue raised anywhere it will help with educating people and bringing about change.
Good Luck

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Re: I need your stories on the difficulties of dyspraxia

Post by AlleyCat » Fri Mar 16, 2012 4:57 pm

I can relate to many of the problems you are describing. The other day, I wrote a detailed response explaining why people with dyspraxia are more likely to take things literally- the same reason applies to why they can find it difficult to know when people are joking. Here's the link to my explanation for this:

http://www.dyspraxicadults.org.uk/forum ... f=4&t=2381

I have had problems in the workplace caused by me speaking too loudly and interrupting, both of which are symptoms of dyspraxia. Particularly frustratingly, I was bitched about for these reasons at a school departmental staff meeting which I hadn't been able to attend (I was working as a teaching assistant at the time)- I was not only angry that the group was talking about me behind my back, but also that some of the members of staff at the meeting knew I had dyspraxia and didn't explain to the others that the things they were complaining about were directly related to me having it! As the members of staff concerned were teachers, I think they ought to have made more of an effort to find out about the symptoms of a condition which some of their pupils must have had. One of the teachers later told me about what had been said, and told me that I 'mustn't interrupt.' Of course being spoken to in such a way made me feel very patronised and as if I was one of the children- to add insult to injury, the teacher who was telling me this was someone who speaks very quickly, so I often found it difficult to get a word in without interrupting. Whenever I'm spoken to in a patronising way in the workplace, it emphasises to me that people don't see me as an equal, which then makes me think that I have little chance of being promoted, so I'm impressed that you've made it into management. Regarding self esteem, I think people with dyspraxia often have problems with this due to past experiences of being bullied, which can then result in them easily getting put off pursuing something which they might end up being really good at.

AlleyCat
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Re: I need your stories on the difficulties of dyspraxia

Post by AlleyCat » Fri Mar 16, 2012 5:07 pm

Aladdin- I don't know if you've got anyone sorted out to do a private assessment yet, but if you haven't you should be able to find someone on here:

http://www.bps.org.uk/bpslegacy/dcp


I agree that the information available on how dyspraxia affects adults isn't good enough. Like you, I have a patchy employment history of mainly temporary and casual work- lack of awareness of dyspraxia means that people with the condition are particularly likely to end up with this kind of work history. Employers and higher education providers could probably learn more about dyspraxia by reading some of the posts on this forum than they could by looking at the 'official' information that's currently available.

shakey
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Re: I need your stories on the difficulties of dyspraxia

Post by shakey » Wed Apr 04, 2012 4:51 pm

One of the problems I am finding is that schools seem very reluctant to refer anyone except the most severe cases to be assessed. I had a problem with my older child (age 9, possibly Aspergers) and wanted him referred but they kept telling me it wasn't Aspergers & not doing anything. I eventually went to the GP and he is going through the assessment process now. School have said from the letters they've had from the paediatrician "oh he's got mild aspergers then"! I felt like saying, that's what I've been trying to tell you for the last 4 years! ](*,)

The younger one (age 7) does also have some Aspergers traits but it wasn't until I looked at one of his excercise books and found that the teacher had written "I can't read most of your answers here", several times, that I made the link to dyspraxia. But still school said nothing to me untill I pushed them at a parent's meeting and said has he got dyspraxia? (he also has difficulties with spilling things, using play equipment, refusing to do some activities in PE and sensitivity problems as well as a very loud voice!)

Why aren't the teachers picking these things up and asking me about it?!
I realise that the above may be a bit of a tangent for you as you probably want adults' views but if they can't get it right for our children, how are they going to get it right for the adults?

Regarding myself. I went to my GP last week and asked her if I might have dyspraxia - I had very carefully typed out a list of my problems, referring to the dyspraxia foundation website to tally up what things I thought were relevant. She said "there is nothing here that screams dyspraxia to me." ?????? (The sheet included problems with clumsiness, handwriting (that put me in the remedial group at school), sensitivity issues etc) It seems that many of our GP's are unaware of what dyspraxia is let alone what effects it might have on people's lives as she also questioned why I would want to get a diagnosis.

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Re: I need your stories on the difficulties of dyspraxia

Post by AlleyCat » Wed Apr 04, 2012 6:31 pm

It's so frustrating that teachers still don't seem to know much about the learning problems which their pupils might have. SEN training in schools needs to be vastly improved. It's especially frustrating for me as I've been desperately trying for the past few years to get a teaching post, and know that I'd be particularly attuned to the needs of children who have learning problems. However, I can't get a foot on the ladder so I have still not started my NQT year. I suspect this has got a lot to do with my PGCE having taken over 3 years to complete, rather than the usual 1 year, due to my University tutors being particularly inept at catering for the needs of a student who was 'different'. I am now left with a gap in my course which I'm sure looks suspicious to quite a lot of headteachers. When I've told schools about my dyspraxia, I've either not been invited to interview or my interviewers have sat there open mouthed, looking as if I've said something incredibly shocking! If you haven't already signed it, the Dyspraxia Foundation has got a petition aimed at improving the training for GPs:

http://www.dyspraxiafoundation.org.uk/n ... .php?id=91

There's also a mental health petition in the latest news section.

djgard27
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Re: I need your stories on the difficulties of dyspraxia

Post by djgard27 » Mon Sep 10, 2012 10:34 pm

I am now 31 years old I was only diagnosed at the age of 28 and faced many similiar problems to others on here I was bullied at school and not treated well by teachers so i dropped out of school at 15 and went to College for a few years and studied accounting.

Then over the next few years I was in and out loads of different jobs the last few years ive been more steady at work and actually work back at the college i studied at in an accounts role and im just in the process of telling people at work about having this there is so little guidance about so its hard to know how to approach different situations. If i can do anything at all to help raise the profile of this please let me know thanks for your efforts.

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Re: I need your stories on the difficulties of dyspraxia

Post by Jim » Tue Sep 11, 2012 10:47 am

Interesting thread! Any update on the proceedings? :)
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That's amore” :whistle:

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Re: I need your stories on the difficulties of dyspraxia

Post by LuluBoo » Mon Jan 21, 2013 5:08 am

I was always a bit 'clumsy' as a child
before i was diagnosed I was just thought to be clumsy by my family :lol:
as soon as i started year 1 in 1997 (feel so old haha) I was picked on mercilessly by the children in the year above one of them was a boy that lived next door, i suffered the regular taunts and slurs, being pushed in the mud and the odd chinese burn. I was working twice as hard as the other children but got nowhere, I was quite good with reading thanks to my great grandad. it was during year 1 i started seeing development specialists, educational psycologists and OTs. my balance was affected also and used to come home with cut knees and bumped head letters (I bet my mum 'loved' getting those).
I remember one time my bewildered grandad questioned how my younger brother and sister knew their left and right but i didn't i worked out the difference at 10. i've had trouble making friends and didn't have a real friend until year 4. my writing is dreadful and only if i really strain myself can i write something ledgable but it is tiring and i end up getting messy again.
I walk in front of cars without seeing them (handy, cods i live on a main road :lol: ) I can't stand up for ages because my legs get really tired, I was on a bus once and nearly fell on somebody's lap :blush: and another time as i was walking down i nearly fell into someone :blush:

i can't remember a day i was at secondary school where i was bullied and ended up having a breakdown at school at 13 years old (i remember having been so stressed i scratched my arm until it bled) i went to learning support in tears because I had enough but nobody did anything. I cannot read an analougue clock i used to ask my dad what the time was only for him to be frustrated that i couldn't read it. i struggled with spelling and my times tables i still don't know most of my times tables. I was also picked on two 'wonderful' former friends during my first hear at college so badly that i nearly ended it all. I am now having trouble locating and holding down work. I learned to tie my shoes at 10 as a treat i remember my mum and dad let me wear my purple canvas shoes to school. I spill kettle water on myself a lot (burned my foot once), I have trouble climbing and catching a ball.

sorry for the long post

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