So I have dyspraxia/dcd but its not well known and I'm really struggling to navigate rhe mess of the us system. Well having finally managed to get myself to an occupational therapist....I am being pushed to take an autism diagnosis...the OT is really not familiar with Dyspraxia she is convinced that is how I get services in the USA.
I am so conflicted here. A. It just feels wrong. B. Its just adding to the problem of messed up classifications and lack recognition for dyspraxia/dcd. On the flipside its access to services and assistance.
Would you do it? If go as far as acting the part to qualify?
Let yourself have these labels. Or continue struggling with no support. I hate the idea of working the system...yet it is the system that is broken.
I am 40 years old and I have no future. That is not depression it is an objective evaluation of the results of just barely getting by...being considered to functional to help but not functional enough to achieve anything...no real support, tons of wrong labels....and now getting divorced.
I love life I just hate the one I feel trapped in. I enjoy interacting with people but well I feel like many of you...being part of society just is not worth it.
I have worked all my life yet all I see is a life of endless struggle, marginalization, and disempowerment....I want to qualify for assistance as disabled yet continue to be a contributing member of society....yet qualifying seems to mean lose what little I have just sothey can see me helplrss and hopeless and be the ones claiming to get meto the vaguely functional spot I am already at....and likely with labels that don't even fit.
I am frustrated both on a personal and societal level...by how there seems to just be no support or true future for me. I wish I could get myself the support I needed as a child....but I can't... there are no time machines.
I would be an activist but I'm to busy just barely surviving
Michele
Navigating a broken system
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michele
- Getting settled in
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- Location: Illinois, USA (UK heritage)
Navigating a broken system
"When none of the offfical paths lead you anywhere good there is a simple solution...forget about roads."
Re: Navigating a broken system
Hi Michele
I too would feel utterly conflicted by such a dilemma and would have to know categorically what such a diagnosis/label would mean and feel completely assured that the quality of help/assistance would be worth the compromise of accepting the label. Would an Autism (ASD) diagnosis be conclusive? At the end of the day you are still you, whatever labels you receive. it's your prerogative as to how you use/disclose them and who to.
Some might choose to call it false pride but I do worry quite excessively about how others perceive me and how such a label would affect that. I don't wear an 'I'm Dyspraxic and Proud T shirt' as I would be be very unhappy to be defined by other peoples' view of what dyspraxia (or any other label for that matter) is/means due to society's general ignorance/fear even hostility to people who are differ from the generally accepted societal norms. That said there are some very decent people who are accepting and supportive in the right way. The trick is finding/identifying them.
It's a bit of a conundrum in that more of us need to have the courage to come out and say I'm dyspraxic in order for us to be better recognised as a part of society. However Dyspraxia is not easy to explain and by its very nature makes it very hard for us to communicate what it means and what we need. Also should we really be forced to have to explain ourselves, why can't people be more flexible in accepting us for what we can contribute, rather than focussing far more on what we struggle with.
I'm aware there's a US Dyspraxia Foundation but have you tried/had any success reaching out to them?
Equally given the crossover with dyslexia (in terms of organisation of thought/short term memory/concentration), it might be worth seeing if any dyspraxic dyslexics can offer any thoughts or ideas.
It might be worth asking yourself what help would I give to/want for myself and how would I envisage it's successful delivery. So often help seems to be 'here's a laptop/software now get on with it', when it's really attitudes that need to change to allow us greater flexibility to be able to help us discover ways in which we can shine.
Anyway enough of my waffle. As always, please don't feel afraid to challenge me or ask me to expand on anything I've written today.
What do others here think?
I too would feel utterly conflicted by such a dilemma and would have to know categorically what such a diagnosis/label would mean and feel completely assured that the quality of help/assistance would be worth the compromise of accepting the label. Would an Autism (ASD) diagnosis be conclusive? At the end of the day you are still you, whatever labels you receive. it's your prerogative as to how you use/disclose them and who to.
Some might choose to call it false pride but I do worry quite excessively about how others perceive me and how such a label would affect that. I don't wear an 'I'm Dyspraxic and Proud T shirt' as I would be be very unhappy to be defined by other peoples' view of what dyspraxia (or any other label for that matter) is/means due to society's general ignorance/fear even hostility to people who are differ from the generally accepted societal norms. That said there are some very decent people who are accepting and supportive in the right way. The trick is finding/identifying them.
It's a bit of a conundrum in that more of us need to have the courage to come out and say I'm dyspraxic in order for us to be better recognised as a part of society. However Dyspraxia is not easy to explain and by its very nature makes it very hard for us to communicate what it means and what we need. Also should we really be forced to have to explain ourselves, why can't people be more flexible in accepting us for what we can contribute, rather than focussing far more on what we struggle with.
I'm aware there's a US Dyspraxia Foundation but have you tried/had any success reaching out to them?
Equally given the crossover with dyslexia (in terms of organisation of thought/short term memory/concentration), it might be worth seeing if any dyspraxic dyslexics can offer any thoughts or ideas.
It might be worth asking yourself what help would I give to/want for myself and how would I envisage it's successful delivery. So often help seems to be 'here's a laptop/software now get on with it', when it's really attitudes that need to change to allow us greater flexibility to be able to help us discover ways in which we can shine.
Anyway enough of my waffle. As always, please don't feel afraid to challenge me or ask me to expand on anything I've written today.
What do others here think?
Tom
Moderator/Administrator
With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
Moderator/Administrator
With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
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michele
- Getting settled in
- Posts: 37
- Joined: Fri Aug 22, 2008 9:03 am
- Location: Illinois, USA (UK heritage)
Re: Navigating a broken system
I'd like you (and anyone else) to expand. One thing you should probably know is I am a very strong reader and I get paid to talk to people for a living. I have also spoken on stage, been in plays, sing karaoke, worked retail. You get the idea.
So dyslexia would be another really bizare fit for me. Its right up there with puttingnme on the autism spectrum....yep if we would like to define this spectrum as containing its near polar opposite. Yep a rain forest could be defined as being on the desert spectrum just as a new born babe is indeed definaable as on the spectrum of expiring from old age.
In fact everyone eaarth would be on the autism spectrum using definitions like this we can be one big strange club (shakes head, rolls eyes, and laughs at the idiocy/irony)
We can all be on every spectrum and diagnosed with everytging. Hmm we are all on the millionare spectrum, and the lottery winner spectrum, and the list positive, negative, and neutral never ends.
So dyslexia would be another really bizare fit for me. Its right up there with puttingnme on the autism spectrum....yep if we would like to define this spectrum as containing its near polar opposite. Yep a rain forest could be defined as being on the desert spectrum just as a new born babe is indeed definaable as on the spectrum of expiring from old age.
In fact everyone eaarth would be on the autism spectrum using definitions like this we can be one big strange club (shakes head, rolls eyes, and laughs at the idiocy/irony)
We can all be on every spectrum and diagnosed with everytging. Hmm we are all on the millionare spectrum, and the lottery winner spectrum, and the list positive, negative, and neutral never ends.
"When none of the offfical paths lead you anywhere good there is a simple solution...forget about roads."
Re: Navigating a broken system
Hi again Michele
First of all sincere apologies for any offence caused in my appearing to suggest you might be dyslexic. For the record I don't consider myself to be anywhere on the dyslexic spectrum either and I probably would have taken the same level of offence were someone to suggest it of me without clearly qualifying such a statement. People make assumptions all the time, it's intensely annoying but it's their error and if they want to persist in believing something that is wrong, despite evidence/protestations to the contrary, well more fool them. (Of course that is easy to say when one feels more certain of where/how they fit in and no one is trying to lump them into a group with which they do not feel they belong!)
What I was ineloquently trying to get across was, that my personal understanding has shifted. I've learned that dyslexia is much more complex than simply just struggling with reading/spelling etc, by the same token that dyspraxia is more than being a bit clumsy/awkward etc. These days I'm more of the opinion that there is a degree of crossover that we may not fully appreciate or understand, much less want to admit. However I do appreciate that confusing the two conditions is often like pouring gasoline on a bonfire! All I wanted to suggest is that it is possible a Dyslexic support group may know more about dyspraxia than you might think or give them credit for and might just possibly be able to put you in touch with useful contacts.
It's the way of the world that people will try to categorise us (at their peril) the same as to a degree we will try to categorise/try to make sense of other people/things. This is influenced by our own learning/life experience which is subject to change.
Thanks for responding and again sincere apologies! I hope this clarifies my thinking somewhat, you are still of course welcome to emphatically disagree!
First of all sincere apologies for any offence caused in my appearing to suggest you might be dyslexic. For the record I don't consider myself to be anywhere on the dyslexic spectrum either and I probably would have taken the same level of offence were someone to suggest it of me without clearly qualifying such a statement. People make assumptions all the time, it's intensely annoying but it's their error and if they want to persist in believing something that is wrong, despite evidence/protestations to the contrary, well more fool them. (Of course that is easy to say when one feels more certain of where/how they fit in and no one is trying to lump them into a group with which they do not feel they belong!)
What I was ineloquently trying to get across was, that my personal understanding has shifted. I've learned that dyslexia is much more complex than simply just struggling with reading/spelling etc, by the same token that dyspraxia is more than being a bit clumsy/awkward etc. These days I'm more of the opinion that there is a degree of crossover that we may not fully appreciate or understand, much less want to admit. However I do appreciate that confusing the two conditions is often like pouring gasoline on a bonfire! All I wanted to suggest is that it is possible a Dyslexic support group may know more about dyspraxia than you might think or give them credit for and might just possibly be able to put you in touch with useful contacts.
It's the way of the world that people will try to categorise us (at their peril) the same as to a degree we will try to categorise/try to make sense of other people/things. This is influenced by our own learning/life experience which is subject to change.
Thanks for responding and again sincere apologies! I hope this clarifies my thinking somewhat, you are still of course welcome to emphatically disagree!
Tom
Moderator/Administrator
With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
Moderator/Administrator
With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
-
michele
- Getting settled in
- Posts: 37
- Joined: Fri Aug 22, 2008 9:03 am
- Location: Illinois, USA (UK heritage)
Re: Navigating a broken system
I was not offended...I felt it important to clarify why it would seem quite odd to view me as dyslexic. Admittedly I do not actually know a lot about dyslexia....but growing up my school district basically had a program for kids with reading disabilities...and me. So I sat in the same room but seperated, one of the strongest readers in the school (college level in grade school) and they would keep saying all sorts of dyspraxia issues were behavioral so now I have a lifetime of being screamed at and blamed and taught to beat myself up to deal with on top of the rest.
The rest of what I said was meant to be humerous in the somewhat bitter but playful way I often cope with life. I can not help being bitter because I have felt and continue to feel railroaded my entire life....but at least I know how to laugh.
I know an autism diagnosis is really silly for me...yes there are some overlaps but if I insist on doing certain things my way um its because I actually have tried the other way over and over and it does not work....I hate routines and regimentation. I have an imagination. I have a sense of humor. I get irony and sarcasm. I use metaphorical examples. Yet I have had a rough social history....because dyspraxia. Its just not for the same reasons. What I worry about is, while an autism/aspergers label will allow occupational therapy for insurance and some things are helpful for me...the rest are polar opposite to my needs.
I so wish I could just exile clocks calenders and schedules from this earth except in occasional circomstances that are vitally important
And then there is thenlabel itself thenjobs I am good at being a strong communicator to customers/clients,solving problems. How would a label like that impact me when it is supposed to go with not being social and poor communication skills? Maybe I am somehow dead wrong on what aspergers/high funcrioning autism is but I fit dyspraxia way better. (Even if we use this simple seperation...autism primary social secondary physical, dyspraxia primary physical secondary social...and I contend half our social is due to people not getting it and growing up being bullied).
The problem is my country/society again tries to force me into yet another box the seems a bizarre fit...dropping out of society seems equally logical. (Rolling eyes and laughing bitterly yet again)
Michele
The rest of what I said was meant to be humerous in the somewhat bitter but playful way I often cope with life. I can not help being bitter because I have felt and continue to feel railroaded my entire life....but at least I know how to laugh.
I know an autism diagnosis is really silly for me...yes there are some overlaps but if I insist on doing certain things my way um its because I actually have tried the other way over and over and it does not work....I hate routines and regimentation. I have an imagination. I have a sense of humor. I get irony and sarcasm. I use metaphorical examples. Yet I have had a rough social history....because dyspraxia. Its just not for the same reasons. What I worry about is, while an autism/aspergers label will allow occupational therapy for insurance and some things are helpful for me...the rest are polar opposite to my needs.
I so wish I could just exile clocks calenders and schedules from this earth except in occasional circomstances that are vitally important
And then there is thenlabel itself thenjobs I am good at being a strong communicator to customers/clients,solving problems. How would a label like that impact me when it is supposed to go with not being social and poor communication skills? Maybe I am somehow dead wrong on what aspergers/high funcrioning autism is but I fit dyspraxia way better. (Even if we use this simple seperation...autism primary social secondary physical, dyspraxia primary physical secondary social...and I contend half our social is due to people not getting it and growing up being bullied).
The problem is my country/society again tries to force me into yet another box the seems a bizarre fit...dropping out of society seems equally logical. (Rolling eyes and laughing bitterly yet again)
Michele
"When none of the offfical paths lead you anywhere good there is a simple solution...forget about roads."
Re: Navigating a broken system
Hi again Michele
My bad, misreading your response and taking it too literally (It is my Dyspraxic right!), I too hate the idea of being categorised and would be afraid/unwilling to accept that label for myself for fear of what others would read into it. I'm obsessive when it comes to clocks, calendars schedules etc (Ever seen the film Clockwise with John Cleese?) speaking of which it's nearly 1 am here and I need to be asleep!
We're all unique in our own way and a sense of humour is an important asset though at times it can wear pretty thin I think many of us become our own harshest critics as a sort of defence against others.
Anyway I shall wish you a pleasant evening, it's nice to have you here. Do feel free to vent here. Sometimes I'm inclined to think that it's the world and others that are mad not us! 8-)
My bad, misreading your response and taking it too literally (It is my Dyspraxic right!), I too hate the idea of being categorised and would be afraid/unwilling to accept that label for myself for fear of what others would read into it. I'm obsessive when it comes to clocks, calendars schedules etc (Ever seen the film Clockwise with John Cleese?) speaking of which it's nearly 1 am here and I need to be asleep!
We're all unique in our own way and a sense of humour is an important asset though at times it can wear pretty thin I think many of us become our own harshest critics as a sort of defence against others.
Anyway I shall wish you a pleasant evening, it's nice to have you here. Do feel free to vent here. Sometimes I'm inclined to think that it's the world and others that are mad not us! 8-)
Tom
Moderator/Administrator
With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
Moderator/Administrator
With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
Re: Navigating a broken system
Dyspraxia is the biggest grey area. We are told we are not disabled however we are treated differently. We have poor processing speed(cognitive) and poor co-ordination(Physical). Personally I hate being treated differently as it is accepting that their is no hope. We also usually have other things such as Autism. It is awfully confusing and their is no consensus on this issue. I do feel we need to be more involved in activism. What can we do in regard to advocacy as if we don't help ourselves who will help us.