Brigadoon

Mobius... the search for outward signs of AS

I never heard the term before reading some messages, and choose to shy from directing where the phrase caught my attention. It's people looking for some tell-tale sign that this or that child or person may or may not have indicators of AS.

What an absolute insult! Possibly, there are outward, obvious manifestations. But, if all were readily-transparent, then... maybe more people would not feel as isolated or so alone in the scheme of life if someone said, "Wow, you got some signs of mobius" (mouth and/or lips). Mobius is a syndrome, a clustering. Not just lips/mouth.

What is it when it comes to the mouth/lips anyway? I can't find in any search data about mobius lips/mouth. I keyed the terms in a targetted search. Does it mean that some are just not as (facially) expressive as some might be or lead themselves to expect? Heck, I can look directly at a person, and that is a conscious effort, and tell a joke I know will evoke a laugh... and do it all-the-while without any indication of where it is leading expressed by my face. I've also heard it referenced as "dry humor." Look at someone, deliver the joke and see if the person "got it." I do it all the time, particularly when I want to "test" a joke I created :). I don't want my neurolinguistics to influence anything.

I sleep with my eyes wide open, at times. The worst of times is around people I have not fully trusted... or being in unfamiliar surroundings. Not in my own home.

I've been told to smile more when I am smiling. Is that Mobius? I dunno.

But I find myself lost in the terminology others may know or seek on which to do "ad hoc" dx of a person suspected with AS. Scary business.

I betcha, there is an abundant supply of demographics whom also sleep with their eyes wide open, appear to stare, don't bat an eyelash, and will out-look a person.

The causation? Possibly... PTSD - or other factors.

So we now know what I think of arm-chair diagnosis by folks whom may have good intentions.

My stats?

I have large pupils. Subjective observers have stated that my eyes appear as if dilated... constantly. My eyelids do not close themselves when I am in a different environment, other than where I feel "at home" or on-guard (like in hotels, etc.), and I have small teeth.

Once others told me that I scared them, and they thought I was awake and they were speaking to me, I became more aware. Maybe, too I just didn't feel at-peace around them, so my eyes were truly the "window" into my soul: My body's way of saying, "Hey, I don't trust you and this is an autonomic response."

Do those things render me to the dx of AS. I think not.

There are oodles of people out in the world whom have similar characteristics/behaviors/traits. They do not have AS.

I think it by coincidence some mapping overlaps with people whom do have AS.

I find it both sad and yet comical that some look for a "hallmark" sign or signature on personality and presentation to diagnose - but lacking the schooling, internships, experience to do so.

If my docs had had their way, when I was a toddler, I would have found myself forever labeled "retarded." It is something my parents should not have repeated to me, but they did, and it drove me ... to discover ME.

Half of my elementary and secondary education was in "gifted" classes/educational core programs.

So... I think: Look at the person, remember the person, treat each as a person.

The rest? Just grist, and it can cut like a knife.

I searched the term Mobius and I was led to this site:

http://www.irtc.org/stills/1997-06-30/view.html

If I've got something Mobius going on, I can live with it :). And bless those whom understand it, and even more the folks whom work years with their own children, and with others' children, whom study how to help without insult and who help create bridges toward greater understanding.

You know who you are.

These Feet o' Mine

... they were meant for walking, only I can't do much of that; I can barely walk most of the time - due to my "faulty" spine. 

December 17, 2004, I had a fall that had rendered wearing shoes impossible. It hurt... A lot and had to ask someone, who put the shoes on my feet, to just rip them off because it was so terribly painful.

Yesterday was one of the first days that I was able to wear shoes! It was a memorable moment just by the fact I could wear shoes (not sandals) and not have the shoes feel like my feet were entrapped in a torture chamber.

I was at a doctor appointment; I see her for pain management as also for AS.

I was venting about something, related to a neurology appointment gone terribly wrong, and was so upset - a week after that neuro. appointment. Suddenly, I found myself smiling. I didn't hear a word the doctor was saying, until she asked me a question. I had to ask her to please repeat the question and told her that I was distracted... and by what?

I spotted a tiny chair nestled near a corner. There sat two little brown Teddy bears. Across their lap was a soft blanket. It was a cold outside and I just thought, the little bears had warmth and comfort. A little boy had placed the blanket over the bears' legs, she told me. I thought, that was just the sweetest thing.

After she told me how the bears ended up with the blanket coating them in warmth, we resumed the "talk" about my frustrations and discouraging feelings following the neuro. apppointment. But... somehow, someplace during that discussion, my brain was wrapped in its own thoughts: My shoes. I was mesmerized by my shoes, their engineering or shape and form. My shoes held my undivided attention.

Something brought my mind back to the realm of the present and I apologized. I said, "I don't know why I find my shoes so fascinating."

Today, I thought of why so I possibly did: As a child, I always stared at my shoes. I would not look at people. I loved my shoes... plaid pattern and little rubber bumpers or toe stop effects. They were MY shoes. I would even sleep with those little shoes laced to my feet. They offered security... because I knew they were mine. The rest of the world didn't belong to me, and was as foreign to me as forging friendships. But, the constant: I had my shoes, my soul/sole mates.

I trusted that my shoes would be there, no matter what else, no matter the other fears or disappointments. I could stare at my shoes and they didn't "see" me. There was safety in objects and not being judged. I could risk looking at them and feeling safe.

My feat: Finding that comfort zone. I'm home!

A view of the Leader of the pack=normal from a bus driver on the spectrum

Now I have said alot about my self. I will see if I can create a picture for you of the so called normal kid that everyone wants. Do not get me wrong we all need to be somewhat normal to survive in this world. My obsevation of the children that are concidered normal is eather very good or very bad. The point I am going to talk about is the pack system of non spectrum people.

Why is it "normal" concidered "normal" to beat  up other kids and continualy harrass other children seen as close to the same level in the pack? Just so you can prove you are above them in the pack! Well this does go on day in day out. The schools say do not do this but it seems to somehow encuraged just so they can be normal. There is not a day I do not see this kind of stuggles going on on the bus. If I try to stop it I am harsh. If I allow it I am to laxed. Hmmm The typical statment is "Kids will be kids".

I guess because most kids do this it is normal. Parents want there children to grow up and be good members of the communities. I guess this means you have to look the other way when the child is violent abusive. Just because they want a 'normal' child. I understand you want you child to be a president of a company. well that is great we need people with good leadership skills to run the companys so they make a profit. There are many ways to run a company. You can step on people beat them mentaly to be good puppys and to blindly do as the master says. I find that most of the corperate world uses this to a large extent.

I also see alot of sucking up going on in the world. Those that want to move up must suck up. I had to do it to get to the top now you must suck up to get the higher notch in the system. This also is concidered "normal".

I saw a superbowl commerial about this. It was funny at the time because it is SO TRUE. IS this the kind of "normal" you want? I am sure some willsay yes. Most willsay no publicly. Then privately admit well it is the system I must go with it.

Is the pack system bad? NO I do not think it is bad. I think that each child should be able to show there leadership skills thay have. I do not go along with the idea that just because child boy can beat up the rest of the class he should be a president of the company. I do not think that just because child F can flirt well she has the needed skills to be Director of Department L. Sometimes they do have the needed skills to be good at what they do, but it seems most of the time they do not. This is an age old problem that will never get fixed so long as kids that can use violence, harassment, trickery, and exreame bending of the truth to make them look better than others.

Remember kids that learn this is ok become adults that do the same things. I see this daily in the schools.

Now I was a kid that for most part "normal" I watched others doing things that were "strange" to me, but I quickly learned that using these tools helped me not get beat up all the time harrased all the time. I learned If I could be-friend a higher member of the pack and bribe them (by sharing what I had) I could ride on there coat tails. No one wanted boy H to get mad and beat them up or harrass them.  I have read many theorys about why children on the spectum have lots of problems in schools. I have never read anything about Mayby Just mayby they are trying to imulate the pack system in an atempt to be "normal". They just do not understand how to do it and make it work for them.  I am not saying this is all the problems but I am saying Look at this posability.

Ok now I will say Some of the "Experts" will just say I am crazy.There is no way this is what is happening. Ok if you do not want to listen then to people on the spectrum (This seems to all to prevelent in the world of the spectrum) then do the world a favor and find some other line of work. One that will not keep hurting the ones you say you are there to help.

One thing that bothers me alot is the fact that some do not want to hear our voice. They know what is best for us. They use harrasment to make us look bad. They write things true or not just to get there point of view across. Right or wrong They alone know what is best for us. Some have not even taken the  time to realy get to know us to listen to what we have to say. Some Experts have said Only children are suffering from autisum. If you are an adult functioning in your community you CAN NOT be on the spectrum. More leader of the pack rederic and harrassment. To those that do listen to our voice I say Thank you. Most of us have a welth of information about this that may help. We would like to share. Not so we can rade the coat tails of a leader. No we want to share so you can help others like us and not fell you have to "cure" this. To help us be good members of our communities.

Life, Death, Money, and a spectrum

Ok This is going to get deep inside. So you may wish to pass this one by. Please if this subject bothers you you should stop reading now. If you wish to continue I will try to explain there are always different ways to look at things. I will attempt to show both sides as best I can.

Life - Life is good. Life is to be enjoyed. I have done that for the most part even with a spectrum. In life you get choises. Onechoise I make is to enjoy lots of my special interests.

Death - A part of life. We all die sometime. The body is designed to last only so long. Modern medicine does help people live longer.

Money - A thing that seems to be more important to some people. It can be used to provide yourself (and family if aplicable) with food clothing and selter. Scientificly It is a good standard for bartering. I will give you a standard sized paper with 20 on it for that "Object" If you agree then you will turn over ownership of that "Object" to me. It is a unit of measure. It's not a constant tho. It is a variable. What was .05 now takes 1.00 to own an object that is like the same "Object" you got 40 years ago for .05 (Container filled with a brown sugary liquid)

a spectrum - Something that is there. No one can seem to define it. Does that mean it does not exest. No It does! Is it something we must "cure" No we should not. Is it something to ignore. Some would like to! So we can not truely define this thing. Some just want it to go away. Some live with it! (directly and inderectly) Others hardly know it exists. So does it exist? Yes It does. Is it bad to be on it. Some say Yes Some say No. Most agree it can be a real pain in the ... at times!

First off I will say I for the most part have had a good life. I have had some "Money" to be able to take care of the needed "Objects". I have had some left over to enjoy some of my special interests. One thing about "Your money" and "Your health" there are lots of people out there that will tell you what choises you should make for yourself. The longer I live and the more I learn the more I am just polite and thank them for there advice. I am granted choises. I can chose to use or discard there advice.

Ok back to me and different ways to look at things. I rember one night my wife reading a Dear Abby to me. A 52 year old man was dieing of cancer. He said, "I have always eat healthy even eating stuff I did not like to stay healty. I never smoked or went with the gang downto the tavern for a beer or two. I went and running insted." He then said. "If I had known I only had 52 years. I would have gone with the gangand had a few with them, I might have enjoyed smoking a cigar now and then. I might have had the Poterhouse, insted of the salad. We both agreed we would enoy these things. We did. A year later she found out she had Breast cancer. Before she died she said to me. "I am glad I read that Dear Abby. We had fun together. We enjoyed that time. We made a choise! We enjoyed! I am sure there will be lots of people say well she might have lived longer. Well mayby she might have. Quality vs Quantity I chose Quality!

Now I no longer fear death. I know it is there. I understand it. I learned to be an EMT so I could understand both life and death better. I am amazed at how well the body comensates for various things. For me it reinforces the "Enjoy now" choise that I make.

I will touch on the TIA I had. Medicaly that is in question that it was. I do not care if they think it was or was not one. I am sure it was.When I woke up I realy did think Oh a "Stroke". You know I was not worried at all. I know How long it takes for astroke to do permenet damage. I know how long it would take to get to the hospital and how long the clot buster drugs to take effect. I knew It was useless to call the EMT's I did go and take 4 more baby asprins right away.  I quickly dicided it must be a Stroke  or TIA (mini stroke) I also knew that the 4 baby asprins were about the only realy good quick thing I could do for it at that time. I chose to enjoy my special interest in the "Workings of the human body" I did a number of tests that I found to be very fasinating. I had a chance to experence something most never get to. I got to know what it would be like to have an arm that the brain did not even know was there. It could see it there. It could fell it be lifted by my right arm and then droped onto my leg and I felt the thud of a lifeless arm on my leg. I tryed to command my arm to work but nothing. There was no communications with the arm what so ever! I knew all the lines of comunications should be ok. I had just been sleeping. I woke up with a useless arm. Now I am sure there will be LOTS of people try to give me there advice right now. ALOT have I chose to ignore them. I will again also If I get alot of "Advice" about this. I do value your concern but I chose to ignore it. That is my choise. ALOT of people said "I must have slept on it wrong. Been there done that. there is always pain when blood flow returns when it is that. You get tingles It is not "warm, pink, and dry"  My arm was all of them meaning there was more than enough blood flow to suport the arm. Basicly my brain forgot there was an arm there. It was not even upset that this was happening. When it did start to come back (about 3-4 mins later) There was NO PAIN o any kind. I just started to fell the pinch I was doing with my right hand fingers. It was a distant felling and it did not hurt at first. As time went on I could move the parts again. The pinches hurt more. Now meny will say I was dumb or crazy not to call the EMT's well that is your choise! I made a choise to ride it out. I am happy that all is well with my arm. It is like nothing happened. That I am glad. Lookingback I still say I made the right choise for that one. four baby asprins, see if the arm works again in the morning.

Now for me and death. I choise to have my "See food diet" I see food I like I eat it! Sometimes that is a nice salad sometimes it is pizza. Sometimes it is pure sugar! I eat it I enjoy eating it. With not a large pile of "Money" you are somewhat limited as to the types of things you can enjoy. So I choise to enjoy food. I choise not to stress out over am I getting my 5 veggies and fruits today. Sometimes I eat lots of them Sometimes not. My choise!

Ok yes I smoke. It is still semi-leagal to smoke (tobacco) I do for the most part enjoy it. So I choise to continue to do it. Yes I also drink lots of coffee! I realy like it. I like it more with chocholet in it. I choise to do this. Coffee you might say is "One of my special interests" I even have a few beers now and then with the gang!

Ok by now I am sure you will want to give me advice. I will do my best to be a good listener. I will try to thank you for you concern. I will remember that Dear Abby my late wife read to me. I will try to enjoy my life. No matter what is pitched my way. Sometimes that is hard to do. Other times it is EZ. Today was hard to enjoy life. IWell It showed yesterday. I am sorry. I should try and remember to enjoy but sometimes I do forget. Sometimes by brain  does not always choise wisely. Today it did not. If you want an appoligy then here it is. "I am sorry I made that choise and you were hurt by it." I do hope it will help.

I hope this will help you to understand me better. Why I make the choise I do. Sometimes I will take advice sometimes I will not. I make the choises they are not always the best choises. They may not be the choise you would make. That is cool with me you can make that choise and I hope it is a good one for you.

Thank you for listening and thank you for caring!

Online Social Networks (OSL) 2005 - Roundtable Meeting in Second Life!

I know that all the members of Brigadoon are very interested in how online communities and online social networks help people, so I'd like to bring this to everyone's attention. :)

There is a very interesting Online Conference going on Feb 9-23 called "Online Social Networks (OSL) 2005"

Here's a description:

OSN2005 will be a summit for all those interested in working with social networking processes, tools, and media. In addition to attending many workshops, panels, and presentations by leading experts and practitioners, attendees will have the opportunity to be part of a community with a significant role in defining the future direction of online social networking. If you want to help shape this industry, come to OSN2005!

During the OSN2005 summit we will co-create and publish a manifesto describing what we want and need from online social networking tools. What are the key criteria for choosing and assessing OSN products and services? What gaps exist in currently available software and related tools? What needs to happen before it's common knowledge that OSN products and services can deliver significant value? What are the most promising developments in the OSN industry?

Attendees will be invited to participate in a series of focus groups to provide feedback on current OSN technology and articulate specific suggestions for future features and developments. A series of White papers based on these focus groups will be shared with venture investors who want to know where to place their bets in this industry.

I'm attending this conference, and it's already turning out to be a fascinating meeting of minds and ideas. Last night I was speaking online with one of the conference organizers, and I suggested that they have a "break-out roundtable discussion" using the Second Life environment. She thought that was a great idea, and encouraged me to step up to the plate and organize it myself. So I did. :)

We'll be having a "Second Life VIrtual Roundtable" meeting on Saturday, February 12, at 6:00pm Eastern Time on the Second Life sim named "Live2Give."  I volunteered to host it and have it on the "Live2Give" sim since it's a large publically accessible area with plenty of space for lots of people to meet.

I'd like to extend the invitation to everyone reading this blog, whether or not you are "attending" the conference.  Please join us!   The meeting in Second Life won't be anything formal, just a chance to have a friendly chat with other people at the conference who are interested in the future of online social networks and to share ideas about online communities.

To join the meeting, log on to Second Life and teleport to the sim "Live2Give."  If you have any trouble just send me an Instant Message in Second Life (my name there is John Prototype).

Hope to see you then!

A mind's playground...and then some

It's been a long few weeks of meetings: we discussed blogs, set up goals for a team project in SL, and dealt with the changes many of us had been through. That's why getting together again for some "down time" last Sunday was a great idea. We spent some quality time around a beach fire, watched John make a clam right before our eyes, we each received a winged horse and ....somewhere along those moments of togetherness, I was reminded once more that SL is really a mind's playground.

We terraform, build houses, make objects...we even make friends and, more importantly, we grow as human beings. I see people working through their misunderstandings and I can't help but notice that any one of us can quit at any point. Yes, you can argue that it's easier to break ties and leave friends you've made on SL, but it truly depends on how much of yourself you choose to dedicate to SL and the relationships you build there. In both real life and second life, the harder thing is to stay, go through those rough times and strengthen yourself and the bonds with the others. As long as we are in Brigadoon, we give each other the hope that we can learn, and we can cross the bridges of communication. This is not Hotel California (from the Eagles song..." You can check out any time you like/ But you can never leave"). On the contrary, you are free to leave Brigadoon any time you wish, but leaving will not teach you anything you had not learned before.

Serious stuff out of the way, I really enjoyed the virtual trampoline. :) I only saw one in real life close to 6 years ago and was too afraid to jump on it. I didn't have as many second thoughts in SL, but I still had to figure out how to use it, where to step, and most importantly, what kind of moves I wanted to make once I was in the air (hehe). Kept me entertained for about 10 minutes as I was figuring out how it was scripted....and throughout the entire time, my heart was actually racing...hmmm wonder if this qualifies as cardio.... :-P

More on seeing in Pictures

I am not sure why I see in pictures. Might be the spectum or dyslexia. It could even be a combo of both. I do know people on the spectrum tend to be good engeneres, good at detective type work (forensics). They tend to be good at math and computer programing.

When I am really seeing things well It is fun. I can see what It will look like in 3D and rotate it in all directions so I see all side of it. If I work on something and studie the prints I can see the wiring diagram know all the signal names and exactly what they do, and where they go. I have had several instances where they had a problem at work and the design engs worked the problem most of the day and they could not figure it out. I walk in for my eve shift and they give me a list of symtoms, and I review the "pictures" and (few seconds later) I will give a list of things to check. Most of the time I was right on with the top picks to try first.

I also had one time the failure review board met and was concidering a fix for a broken bolt problem. They all like it. I just sat not saying a word. They all agreed it would work. My boss asked me what I thought of it. I replyed well you all have decidedit will work. you will build a test unit and give to me to test. I am sure it will break on the first 5 mins of the first test. I just wanted to be sure everyone liked it before saying I will break it. They allsaid I would not break it on the first test. they had all the math to prove it would work. I said Ok give it to meand I will test it. Gee it broke in the first 5 mins. After that ifI said I was sure i could break it they at least listened to why I thought it would break. Not only could I see this in 3D I could install this part (in my brain) then run the test knowing allthe forces acting on it the stresses in a 3 plains (in Sl that ismoment in the X Y and Z axis) They were only looking at compression. (Z) I could see the shear (lots of X and some Y) acting on the bolts. I could do that in a meeting not anywhere neer prints or the unit under test.

Now you ask If I an ability like this Why am I a School Bus driver? Well that is EZ to say. I/we (people with AS) have a horid time with interviews. If you do not look the interviewer in the eyes they think you are not being truthfull! Our communication skills realy SUCK sometimes no make that most of the time. I/we  tend not to brag on ourselfs that much. (I have some here to help everyone get an idea of seeing in pictures) Some of us (me) look sort of like Albert E. We may have a great resume but the interview skills kill any chance to get the job!

So you find a nice job that is a work independent type job that most people do not want. (like school bus driver) They are looking at driving records and stuff like that. The interview is more a formality that the main selection tool. Once you are in a job like this you do your job and go home.

So it realy does not matter that I can do all these great things and have a BSEE deg. I would have a tough time getting a good job to use this gift. I live in a world that does not see what I can see. I am ok with that. I do think it is a shame I can not use this gift properly but I figure it is there loss. I can use it for my enjoyment.

I am hoping that this will help others understand that poor communications skills are a MAJOR problem for anyone on the secturm. Formeit results in not getting the job I should be doing. For the potential employer you are loosing more  by basing it on the interview, than the abilities.

My Heros

Well I find myself in a creative nothingness right now. Yesterday was really bad. I normaly just go and doother things in Sl (and RL) whenthis happens. I used to go rate people and see things in SL. I at least was mak'n a few extra L bucks, and seeing some cool suff. Now I do not do that anymore.

This is not about SL so enough of that. It is about my heros and why they are. Oh ya one of these is one that most peeople might desagree  with. I have my reasons why he is on the list.

1. Alebert Einstein (Humanoid)- Oh yes he has to be #1 he and I seem to share some of the same "chalenges and gifts" They are very sure he was dyslexic and most likely on the spectrum also. I beleve the spectrum goes WAY past what they "People not on the spectrum" thinks it goes! I beleve I am past there so called end of the spectrum and he was way past me! The world need more like him!

2. Spock - (1/2 Vulcan - 1/2 human) Ah pure logic at its finest. He inharited mostly the best of the vulcans systems including the true logic. He did get enough from his mothers side to mellow out the true Vulcan ways. There was just enough human in him to make this list. He does make because of the true logic from his Fathers side.

Note: I would include Data here also but being a machine/computer I will just say he would also make it on this list. He is the best programed computer (I do like well programed things) and would make it otherwise.

3. Bill Gates - (Humanoid) This one alot of people will have a problem with. If you do fine There is a logic he has shown that earned him a place on this list. Why back in the early days he started a company called Microsoft. (some and I too have called it Microshaft and other not so nice names) Well it is the way he listened to what his employes said that would make working there better. Things like Nerf balls and hoops Pin ball machines and free drinks in the break rooms. The ability to have little toys like legos in there offices. He figured that if they can take a good break and have some fun then when they do return to work that it would be better work. More intence work. They may be able to do a better job that way. I understand that logic very well. I use this type of logic on the school bus I drive. Am I a bus driver that lets the kids go wild .. NO I do allow some things IF they do not do some other things (saftey stuff No hands heads out the windows ect.) They do respond well to this. There are many things I do not like about Microsoft, but you have to admit Bill must have/and continues to do something right. I beleve this basic logic (so different form typical corperate America using the militaristic method of conformance "Give us this day our daily threat!")

These are my heros. I beleve others on the spectrum also my have these same heros.

I managed to get this writen today my creative Index (0-100) is still low 20-30 yesterday it was about 10  You may have noticed this is a much better writen post. This is because I had to work for each line on here. It did not flow. When I have a flow (Creative Index over 65) Then I tend to just let it go and not work at making it nice readable lines of text. It just flows.

I wanted to get this info out so I pushed to get it writen before it to went away. I have ideas and when this lull hits I loose good or great ideas because the time is not right. Well it wasn't but I still got it out (this time).