My Story (was first post...now rewritten)

Introduce yourself here, a bit about you and your interests.

Moderator: Moderator Team

Post Reply
michele
Getting settled in
Posts: 37
Joined: Fri Aug 22, 2008 9:03 am
Location: Illinois, USA (UK heritage)

My Story (was first post...now rewritten)

Post by michele »

This is a completely edited version that actually attempts to tell the cliff notes version of who I am and how Dyspraxia influenced my life....it contains things I've never told anyone and I hope I'm notn making a terrible mistake being this open.

I just spent this afternoon trying to find my original diagnositic paperwork and being dyspraxic, well I can't find it so this will have to be from memory.

When I was aproximately 2 and 1/2 years old I had Mononucleous, ran a very high fever, went into a febrile seizure, was put on phenobarbital (a practice that has since been discontinued as completely unneccesary in the case of a single fever induced seizure) and was on phenobarbital through what is generally seen as the critical period of motor development. Whether it was brain damage from the illness, a genetic predisposition (my mother also went through a febrile seizure at a young age and is also learning disabled, my brother did not have such an event but did manage to flip his stroller at around age two knocking out a baby tooth...also learning disabled)...whatever the reason or more likely combination of reasons something happened to leave me a life long problem. At almost 33 years on this earth I have come far in compensating for what was presented to me as a myriad of seperate disabilities, I can give the illusion of being nearly "normal" most of the time...but it has come at the price of deliberate "planned failure" in so many areas of my life.

In preschool I was lagging behind very badly in shoe-tieing, clock reading, I was awkward, bumping into things, forgetful, couldn't catch, and in jumping rope well it was beyond sad. I was diagnosed with both gross and fine motor deficits and delays and recieved motor skills tutoring (further testing in more academically related areas would occur in kindergarden, and I would be pegged as ADD in university/college)...I wish the motor tutoring had continued for longer because it did me more good then most of the acedemic assistance which was sadly geared more toward dyslexia rather then the sort of disabilities I have. My parents recieved two very good pieces of advice in those early days...put me in gymnastics/horseback riding/swimming and have me play video games.

Gymnastics had a wonder item known as mats :) The expectation was never to make a gymnast of me but the motor skills woman did realize certain things the preschool had been completely wrong about...I wasn't stupid and while my motor skills were in fact worse then originally believed my reflexes were FAST and there were certain physical skills in which I strangely excelled. One of them has always been climbing...I have no idea why but I climb like a monkey and while my gait was on the awkward side I could run and jump much better then should be expected. I don;t know if this woman and these activities helped create balence for me or else I just got lucky in that regard but gymnastics taught me how to fall without hurting myself, how to move my body to compensate for whatever strange situation it found itself in and to get at least a little semblance of spacial awareness into my life in an environment where it was difficult for me to be injured...I made progress and tried not to think about the fact that the kids in my gymnastics class kept getting younger and younger.

In swimming my strokes are far from pretty but I am a fish...capable of swimming under the water for long distances and of holding my own even against waves. I do not fear the water, I can barely dive but I can flip off a diving board so it was something to keep the other kids off my back.

Horseback riding also helped to build my balence and reflexes...I will never be a great rider as I will sadly never be a great anything I fear...but I am nearly impossible for a horse to lose and if I depend on the horse more then most riders to que jumps well that is to be expected. I go by feel and can tell by the feel of the horse's muscles when they are about to jump as I can not judge these things effectively with my eyes.

When I entered school there were more problems, I still could not read a clock, tie my shoes, catch a ball, I was still clumsy, disorganized,I was always losing things, getting lost, etc...this time around they did recognize that I had a large vocabulary and knew how to charm.

More testing followed, it might have been this one who suggested the video games :whistle: Anyway I learned to ride a bike at some point I really don't remember how old I was when the training wheels came off but I made it through that milestone.

Social issues started cropping up also and while I was friendly the differences were starting to show as the grades continued...I was in the learning disabilty program all through school pegged with a very high verbal IQ and a performance IQ bordering on the mentally handicapped range. I don;t remember all teh specific results until I can find the paper work but block test issues, hand-eye coordination, some parts of memory being problematic while others were very good (I call my memory audiographic for lack of a better word as its more sound based then pictures), spacial perception all but non-existant, problems with time,...I know there is more I just can't remember the names.

The school system was frankly at a loss...they were prepared for dyslexic kids it was just becoming all trendy and had no idea what to do with me.

I am highly verbal but in retrospect dyspraxia does hit me a bit there...in the difficulties I have with reading aloud (I start getting toungue tied and mispeak sometimes which isn't a problem as long as I memorize the words and say them rather then actually reading them off the page) and sometimes in expressing what I actually mean to say in terms people can actually understand. In fourth grade we took the first stadard grade assessments and reading class changed from mostly reading aloud...where I was having minor difficulties with muscle control rather then actual reading. Or maybe it was the school just assuming learnign disabled means dyslexic yet again.

Regardless, In fourth grade I jumped directly from the second lowest reading group to the highest...when they realized I was reading and comprehending at college level. My school career is littered with strange triumphs and abysmal failures. They loved me for the school assessment tests which went to the goverment because I've always been a great tester...and I was elligible for untimed because of my difficulties filling in the circles. The combination meant they wanted to keep me for the testing but otherwise were at a loss.

The kids were rarely kind to me especially the older ones...I was made to be a target small, uncoordinated, weird...I went through some truely awful experiances that did a lot of emotional damage I spent years finding my way back from...still I've always been tough and I did survive.

I found music to be a true love as were all forms of creative expression but my parents were not supportive they wanted "reality" and academics and it was really tough. I took refuge in books and in writing stories I never showed to anyone. I started out a contemplative but also very extroverted child and that was slowly driven away because I was taught to always be so on guard of my behavior. I became an extremely self-contained child and learned to take life and make no waves. My parents who had once been so wonderful were at a loss also they tried to convince me that I was an addictive personality, the principle and only proof...my love of reading.

Because of my disorganzation and other difficulties that are directly related to either dyspraxia or ADD, and only these reasons...I was compared by my parents to an extremely deranged woman who did truely horrible things...because my room was a mess and her house was a disaster. Because she was having difficulties with the ordinary functions of everyday life...never mind that the reason fro her failures was very different from mine and that I was a basically non-violent person.

It hurt a lot. Things like that came very close to destroying me...I know this was not my parents goal they were just at a loss. How on earth do you prove even to yourself that you are not "on a road to becoming like a person". We didn't have dyspraxia or ADD to explain the things I tried so hard to change. I was told no one would ever want to marry me or room with me...I am proud to say I have now done both. Unfortunately I did manage to fail out of school in my first year of university and then hit a class I could not pass at the local community college...after that I gave up on academics.

I was raised to think of not being normal as a terrible thing, my goal was to learn how to hide my problems...and in that much I have mostly succeded. I did get a husband who did not realize the kind of problems I had before marrying me and fortunately loves me despite the revelations of really being in my life. I have managed to hold down two jobs simultaniously, learn to drive a car and generally get by in life. I've even touched tiny pieces of my dreams, however I never made it through college and don;t know if I ever will and I have serious doubts about ever achieving any kind of career...yes I've made it so to speak but there is a large part of myself that desperately wants to BE something to mean something in the world. I am so painfully close to haveing so many abilities and yet it seems always doomed to fall short.

What on earth are you supposed to do with a singing voice good enough to be a profesional back-up singer and the ability to write music when you struggle so badly with rhythm and reading notes?

What do you do with actual creative writing talent and the ability to create poems when your punctuation, spelling, typos, and sentance structure make any chance of real publication sadly remote and you have a really hard time trusting people because of emotional abuse?

What do you do with maybe acting talent when the time to find out would have been when you were a kid and you didn't get that opportunity? Does a good review in community newspapers real mean anything at all?

What do you do with a mind that is made to do so much more then work in an office combined with such a messed up education that you wonder if its even worth trying especially when you are finally kinda at peace about all the negatives in the past and now to even think about going back into that world of constant failure and frustration...plus doing that means totally forgeting artistic posibilities?

In athletics can you imagine being both naturally athletic and dyspraxic the combination is just frustrating beyond belief for everyone involved...the coaches get all excited and then they want to pull thier hair out. End result just good enough to be kept on the various teams but not to ever do anything with it...only I ever really understood the achievement involved.

For me just the fact that I could jump hurdles was amazing, just give me one to jump but uh going from one to the next was when I ran into problems...sure looked good in practice when there was only one though. To be able to do long jump, never mind being to short for it to do much good. To ride a horse. To ski down a mountain successfully. To be able to climb and hike and run and jump...to have hiked the grand canyon. To be able to cook over a camp fire even if the stove still gives you problems.

My tricks, I don't know if I can teach them but I am willing to try for any of you...all dyspraxics are different and you may not be able to compensate in the same ways I have...more importantly you may not want to...parts of it come with a very high mental and emotional price. I'm not even sure whether or how to mention the biggest of my tricks for fear of being thought crazy or a liar...but uh there was an article on live science today that may finally explain what I have managed to do.

http://www.livescience.com/health/08081 ... sound.html

It says that we actually can hear a little bit with our eyes and presumably see a bit with our ears...I've always felt there are parts of my brain that are litterally cross wired...I wish I could have been a scientist to actually find the explanation for a sense that all humans have to have, a sense that I am sure is natural just not noticed and is probably prevalent in animals as well.

They say the brain tries to compensate for damage especially early in life and until recently well I've explained my condition as being similar to being a stroke victim and having your entire life to learn to compensate. It was so much easier then nameing 12 seperate learning disabilities all of which are part of dyspraxia ](*,) Yet another career path I've considered was some form of teaching or rehabilitation.

Its a known fact that the brain does rewire itself in many cases in responce to damage or maybe i've always been cross-wrired a bit.

The point is since the normal path ways don't work right I somehow cobbled-together a rudimentary awareness of the world around me through the path ways that do work. In complete darkness I can hold my hands in front of me and get a minimal picture of objects in a dim blue-white light this is going to sound unbelieveable but maybe some of you use this also?

I know its not a great movie, but if you have seen the daredevil movie 1/10 or less of what they show for his auditory based vision is what I see using perhaps my ears? And I have always compared it to sonar because it does feel like bouncing waves of some kind...I beleive it is somewhat electrical as accidentally using whatever this is to find metallic or electrical items without turning it off before touching them...leads to a shock, often a blue flash in the visual spectrum that others can see.

Does this make me super-human not a chance but it has helped a tiny bit...one friend I tried to explain this to completely misunderstood, most people do...had I developed this in addition to a brain and body that works normally then I suppose it would be amazing and all...but in my case it only helps a little. Over the years I have learned to be less obvious about using this and it has helped me be less obvious about teh physical aspects of dyspraxia, still the range on this is very short and well there are plenty of objects I fail to identify before injuring myself on them. Can you learn this other then as a young child...I don't know. I was well read even young and I kinda tried to keep the ability by practicing when no one but a very close friend was watching.

The other thing I do is use my reflexes to accomplish tasks that are otherwise all but impossible...i can catch after seven years of trying but only if I'm standing still, and can reflexively do so while taking only one step. Jumping rope is litterally hopeless if I am the one swinging it for myself...I had tricks to fool the teacher into not noticing that I couldn;t jump rope (pretending to be working on an advanced version of it rather then the basic) but it was one of those things I didn;t dare let the other kids see me try for real because well my coordination issues get really, really bad with that one. Finally did show the teacher the real situation in private though it was for a state fitness requirement that year and well the testers finally did pass my torturous jumping as it was obvious the fitness issue wasn;t my problem.

My shoes I learned to perma-tie that or avoid laces. I wear a digital, water proof watch, with a light, alarm and date ficntion that only leaves my wrist when its time for a new one. They are the only kind I can read without taking forever and that is how I don;t lose it. I don;t care how it looks I go jumping and running down stair cases because walking is when I fall and have to be very careful. Litterally numver of times i have actually fallen down a staircase while running 0...number of tiems I have fallen down a staircase while walking 26. And then there are all the close calls :whistle: Escalators I jump off, coming up the, is harder but I kinda leap. I don;t care if it looks childish or risky for me its better to fail because it looks like I'm taking a silly risk then to fall down and stumble doing what should be simple things. Thats what I mean by "planned failure" leasrning to fail a task because it looks like you just didn;t try hard enough or because you tookm to much of a risk rather then because your real attempt is likely to end in a truely pathetic display. I practice things only in private in public I only let people attempt to teach me things I already half know. Is tthe right way, I don't know. It plays into sterotypes about laziness and risk taking...but honestly what other chocie could I have made. I can "pass" as normal now but was the price to high?

I am very proud of managing with a great deal of practice keeping my hiking boots reasonably well tied...for me at least...on the grand canyon trip (I also made sure they were the good kind of laces)...my brother and I worked very, very hard to make sure at least one of us had down all the problematic stuff for that trip...fortunately I was able to master packing the bags and assembling the tent...he got both our shares of directional ability. Were we up to the level of people without disabilities not a chance but the important thing is we did it. And that trip was an absolute dream come true even if most fo the film did get ruined and we were the absolute last hikers to get into camp that night. We made it down an eight mile path into one of the most gorgous places on earth...if any of you get a chance...they just had a major flood but uh when they rebuild...see Supai...hike, take the mules or horse, or take the helicopter but see this place...its incredible. I would happily work with others to take an entire dyspraxic group through this experiance if you are willing. Its almost as difficult to show ordinary folks areas where I am competant as it is to let them see my problems with a group that understands I'm not afraid to shine where i can and two seconds later hand all control over to the person who can accomplish the next task. What I can promise is the experiance of two dyspraxics with different areas of strength and weakness who accomplished something pretty darn neat

Anyway there you have it the person I am and maybe a better picture of how having this problem has shaped my life and how i've sought to overcome it in ways that may have been right and may have been wrong...all I can say is its good to tell the truth and I'm glad to be here.

Michele
Last edited by michele on Mon Aug 25, 2008 6:22 am, edited 3 times in total.
"When none of the offfical paths lead you anywhere good there is a simple solution...forget about roads."
Liz944
Super poster
Posts: 829
Joined: Tue Apr 11, 2006 9:59 pm
Location: UK

Re: First post

Post by Liz944 »

Hi

Welcome to the forum!
Drama is life with the dull bits cut out...
Meg
Power poster
Posts: 307
Joined: Wed Sep 06, 2006 5:47 pm
Location: Reading, Berkshire

Re: First post

Post by Meg »

Hi I'm Meg

Welcome to the forum
gherkin001
Super poster
Posts: 673
Joined: Tue Aug 14, 2007 2:33 pm
Location: Swindon, Wiltshire, England
Contact:

Re: My Story (was first post...now rewritten)

Post by gherkin001 »

Hi and welcome to the forum!

Kirsty
DySpRaXiA dOeSnT mAkE lIfE hArDeR, jUsT mOrE cOmPlIcAtEd.
DooleyD
New member - welcome them!
Posts: 1
Joined: Mon Jan 13, 2014 12:51 am

Re: My Story (was first post...now rewritten)

Post by DooleyD »

Hello, Michelle

Thank you for sharing your story. It was like reading an account of my life. I am 37 and had to navigate the same things in yhe 80s and 90s when there was far less understanding.

One thing I was told recently was that there may be a new diagnosis that covers all of the symptoms you describe and I also experience. It is called cognitive visual impairment and is caused by hypoxia following a febrile seizure or lack of oxygen during birth. Look up the work of Gordon Dutton. Mainly scars form in the brain limiting range of vision. Because this happens when we are babies we are not aware of this limitation and just adapt.

Also, regarding education after many struggles and failed attempts at education I have managed to do three masters and a PhD. It may take longer than most but you will get there if that is what you want. Hang in there. :)
michele
Getting settled in
Posts: 37
Joined: Fri Aug 22, 2008 9:03 am
Location: Illinois, USA (UK heritage)

Re: My Story (was first post...now rewritten)

Post by michele »

I haven't been back here in a long time, but got summoned by a personal message...Dooley I was surprised to find your reply and just read the wikipedia entry on cognitive visual impairment. I do see why you are pointing me in that direction though no one would ever consider me blind. It is possible that there is some relationship between CVI and my form of dyspraxia, however. I did a quick google search but did not spot any obvious research on a mild form of CVI that would allow one to drive and be a prolific reader and a gamer or of classifiying CVI and Dypraxia as being related. We do not know the cause of dyspraxia but many have had brain insults of some kind so as two syndromes that can result from impairment in a similar portion of the brain there is something worth looking into. I'm not sure I actually care which label people throw on me, I have never had a clear cut single one but you have given me food for thought and I want to know more.

Michele
"When none of the offfical paths lead you anywhere good there is a simple solution...forget about roads."
Post Reply