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danny on 'his perfect day'

in responce to elizabeths inquiry~

danny would love to go back to washington dc.  he said he wanted me to come on this adventure  (=   he like to start with another tour of the white house.  then move from that to the oval office where the he and i would have a talk with the george bush.  he wants to share his political views with the pres, and since its his perfect day, he'd like the president to agree to change some of his policies~    after several hours with the pres  he says he'd like to hold a press conference and have all the media there required to make it a global event.  he'd want to speak at length on human rights and speak until every ear truely heard him.   then we'd laugh a lot and go hunt down a denny's.  thats his fav place to eat.  and he'd like a cheese omelet, nice and moist, seasoned perfectly.  and right there in denny's he'd want to drink some dunkin donuts coffee!!   as much as he wanted!!   

that's all he wanted to make his perfect day~

stay tuned for more~

Posted by group mascot on January 31, 2005 at 07:44 PM in other's writings | Permalink | Comments (2) | TrackBack

john s on his 'perfect day'

john wrote this as a reply to elizabeth who asked about anyones 'perfect day'.  since they wanta answer in some detail i've pulled this one out of the comment section where it originally posted and put it in with wilde's writings. 


my ideal day, by john s

my idea of a perfect day would be to have everyone from my group home, who also have cp, and every staff we have to come to the day program on a friday. i would also like my best friend randy to come as well. we would all go in on a friday.

after getting there we'd go into the computer room, just ourselves and the mascot and would pop open both second life and this blog. i would loooooove to share these big parts of my life with them so they can see first hand how cool they are.

in second life we would tour all our old haunts from wildes early roots at our first kiosk, to the wonderful home baccara and mash helped us to establish, to our to our new island in all of its glory!

i'd show them every inch of the island and then see if they could find my hidden treasure! i know we'd have so much fun!! i'd show them how i named each fish and see if they wanted a fish named after them!

on the blog i'd have them read eeeeevery word! i KNOW they would be excited. probably one of my roommates and i wont mention who, mara! would be jealous as anything. lol

by the time they were all finished exploring they'd be hooked!  and wanting to open their own sl accounts!

after several hours of laughing and sharing and dreaming together we would all head home to our cozy house and have a big aromatic feast.

after we'd all eaten our favorite foods till we could hold no more and had talked about second life and our blog a few hours, i'd hook up my new dvd collection on the waltons and i'd watch eeeeeevery episode~ back to back! i've never seen that show, now that i have the dvd's i still cant watch it as theres no dvd player in the house! so i'd watch it from beginning to end savouring eeeeevery morsel!

then we'd all go to bed and dream magical dreams till dawn!

this is what a perfect day would look like to me! 

i give the overall accounting of this post a 10 on saying exactly what i wanted to say!

until the next time,
john s

Posted by group mascot on January 31, 2005 at 07:38 PM in john s's writings | Permalink | Comments (2) | TrackBack

in your cozy world

in your cozy world
by scott

scott asks that you please
READ VERY SLOWLY

i see you there in your cozy world
laughing with your friends
as i sit so close
so far
so alone
screaming at the top of my lungs
tho noone hear
 
darkness cold
aching pain  blinding silence
i can't get out
i can't get out!
and theres none who can help
 
i want you to touch me
see me
reach me hear me
know
but, alas,  how can you?
i am deeply covered
with no escape
 
its like drowning
or burning alive
or being buried alive
or walking for weeks in the desert
or sub zero wind that rips through your soul
 
i'm alone inside of my shell
i'm a captive without hope
without light
without companionship
so very alone
 
sometimes i cant breathe
or think
or know anything else but the aloneness
it strangles me
buffets me
mocks me
 
i cry
and no one sees
i cry out
but no one hears
i speak to you so many many things
but they do not leave my mouth
nor venture beyond my mind
 
i see you there in your cozy world
laughing with your friends
as i sit so close
so far
so alone
SCREAMING at the top of my lungs
tho noone hear

~~~

please see scott's other writings in wilde's writings on the main live2give page.

Posted by group mascot on January 30, 2005 at 11:22 AM in scott's writings | Permalink | Comments (2) | TrackBack

on scott's poem,'in your cozy world'

this writing was composed in concept beginning about 5 weeks ago, when scott was feeling depressed.  i could see it and knew what it was, so we had our first of many discussions on what he was feeling.  as usual i would toss things out for him to comment on.  it was very heavy, not the most pleasant for either of us.  but it had to be done. we discussed his emotions and tossed out discriptors till we could take no more of that session.   he said he wanted to write about it and share it so all could see.

i was not at all comfortable with this idea, though as always i whole heartedly and with zealousness support whatever he wishes to say, and how.  it was just the thought of the overall discomfort and challenge which scared me a bit.  i did not look forward to dragging him through the process of a writing of this nature, causing him to feel so wholly the darkess in all its rage.   i did not like to feel scott feeling such a  heaviness.  scott is, more than you can know, very very precious to me.  he's my shade tree. 

i let a week go by for him to toy with how he wanted to share these things, partly hoping i could cheer him enough for him not to want to write them anymore, i confess.  but next check in he was still passionate and of deep convictions, so we proceeded.   then we spent time tossing out analogies and comparrisons  selecting the ones he wanted.   elaborating on the ones he wanted.  he wanted it to rhyme.  i couldnt get it to rhyme and still carry the weight of it.  finally we had a final draft and he fell in love with each word. it was important to him to be read very slowly so the words would sink in.   scott felt this writing to his core, to every cell, every fiber of his being.   

after he was ready to  post it, and told me where and how, we covered the balance of it all, or tossed it out to be sure we both knew we both knew it.  the balance being this is one side of his coin.  its unrelenting.  it can not be consoled by cheap words which cant be responded to.  it is.  and it gnaws loudly.   the other side of the coin is that scott is extreamly loved and in very fortunate ways.  he is a special treasure to all who know him.  they adore him.  and rightly so.  he also has peers who prefer his company above all others, and he knows this.  his family put him on a throne.  rightly so again, and his mother has the most beautiful profound relationship with him a mother/son could have.   thats the other side.  we both knew then, that we both knew about that side too.  neither side negates the other.   

there was a wee bit of controversy after scott decided to post this.  he was given the opportunity to do so anonymously when he declined.   i addressed the controvery with the following;  anyone else in their 30's who wanted to write scuh a  poem would be permitted to, and not even questioned.  the same would hold true if they wanted to put it on the web.  we all have our dark moments and times. interestingly enough, when we share them, they not only help us but often help others.

scotts message needed to be said.  he did it very very well. i'm proud of his efforts and determination.   i think most people know the feeling of sitting with others and not feeling a part of them or connected in any way.  i learned new bits about isolation through all this.  ty scott for sharing    ty scott for being~ 

your lowly mascot
who adores you forever

Posted by group mascot on January 30, 2005 at 11:20 AM in Mascot's Musings | Permalink | Comments (2) | TrackBack

I found the treasure room!

John S, I finally found it!  While poking around Live2Give Island, I found your secret treasure room.

It's great!  I left a small fairy floating in one of the pretty geodes.  And I hope you don't mind but I took a ride on the seahorse.  :)

What a special hidden place.  John S, thank you for making it.  A beautiful example of how the members of Live2Give are sharing their visions and dreams.  Simply wonderful.

Johnstreasure1Johnstreasure2Johnstreasure3Johnstreasure4Johnstreasure5Johnstreasure6Johnstreasure7

Posted by John Lester on January 29, 2005 at 07:05 PM in John Prototype's Musings | Permalink | Comments (2) | TrackBack

a summary on fridays sl event

as john shared a few entrees ago, there was an event on the live2give island last night.  the exchange and interest level of those attending was a surprise~  john opened it up to a free flow of questions and input of the group.  there were many who had added quite a bit.  you guys were great.
 
we made sure folk knew about both the live2give project and the brigadoon project, gave um a summary of what we did. and that we'd REALLY love to see others with disabilities and such come to sl!  like to see doors open for them, and would welcome them to join us!!
 
some of the folks who attended knew wilde or of them, some had no clue.  so i shared that they were currently a group of 9 adults who played a single character (av) as one.   that they had rather severe disabilities and had been blown away by the empowerment they've since experienced.  and how sl had led them to blogging.  they have a global presence, like going from rags to riches overnight for them.  they love to share, they want to share, with the world!
 
members of the group shared that friends and family had also experienced simular freedoms and inclusion.  each with their own stories on how they felt enriched from it.  it had become a place where the physical torments and insecurities are erased and playing fields were leveled.  even one example of a person without physical disability whose social disabilities were made null and void.
 
one person shared how they'd had a back injury and that being able to play had really made that time easier on them.  they could identify with how it kept you feeling connected and of value.
many asked if such virtual breakthroughs had real life fruit.  the answer was yes.  it was an overwhelming yes.  one guy said it so well, it WAS a part of real life.  at that point i wanted to distribute a piece of my rl presentation on just how many real life gains had been realized by wilde!  but i held back.  i dont have the groups okay to do that as of now.
 
there was a question line which wondered if such virtual experiences were not merely a crutch.  the discussion followed that all have crutches and insecurities, and that anything that moves us out from them was good. its okay for people to have different things work for them, as long as they are working.  they dont have to look the same as ours.
 
there was a discussion on how wilde was enjoying and directing the development of their island.  it was pointed out who had what jurisdiction, and why they chose that.  the crystal garden filled with notecards of wilde's writings was singled out as one example.  wilde has passionately and with a yearning to share sculpted that area.  sharing wisdom, humor, struggles, instructions, inspiration,etc.  they want them available to the world.  they are all contained on this blog under wilde's writings to the left.
 
we discussed possible interfaces to facilitate online usage for people with severe physical challenges, things that might be done.  this link was shared http://braintalk.blogs.com/live2give/2005/01/using_biofeedba.html
it goes to a link on this site talking about biofeedback possibilities in sl. 
 
questions came up on methods to empower folks with severe speach problems to communicate more fluidly, and on body language.  there was much interest in the group during these topics.
 
some had been to the blog here and shared how they were touched.  some had linked it to their blogs  (=   some shared how specific writings by the group had moved them.  we shared how the feed back on the blog had been read and enjoyed by wilde.
 
there were many requests for meeting times with wilde in world.  hang out times.  where those who cared and wanted to tell them hello or maybe ask a question could.  john offered to help with hosting some events~   wilde will discuss ideas with john  this tuesday when he visits.   its their call~    and their choice of fun that matters (=
 
there were several wonderful contributors to the discussion.  one guy offered to try and help get rebuilt computers for others who might like to play sl and experience these same liberating things.  (=   we got his name~   ty  ty  ty    we sure hope all this opens up more opportunities for more peoples!  perhaps other day programs, clubs, or activity centers will follow suit.  we are quite happy to help, guide, or answer questions on this if your interested!  (=
 
it was pointed out that the sl community had had such a strong positive resonce and welcome for wilde.   that the inclusion by the residents, the whole hearted embrace if you would, had effected them and allowed for whole integration/inclusion and allowed wilde greater contribution and to more sources.
 
there was a discussion on how all people with disabilities just crave to be treated like everyone else. or be acknowledged as the same as everybody else.  how the virtual community empowers that better than the physical, and can do so quite dramatically.
 
there was good discussion on communication and emotional bandwidths, chat verses 3D world experiences, and how sl is a very good merge of both allowing for emotions better than other mediums out there.  it was more of a whole experience.
 
there was a loud request for wilde to put together something for the academics of the world to read.  its not the first time the ideas been voiced, but my responce was/is, for now we go slow and just lay a good foundation.   such things as that must be carefully looked at by all participants.  and its all very new to us.   
 
a good discussion was also held on the socialogical implications of persistant virtual communities.  many areas influenced were singled out and elaborated upon.  this was one of the many hotbeds of discussion.   
 
wilde had wanted to be at the meeting.  they cant come to evening events.  they read about it in the events schedule and in the blog and are very curious to find out its summary.  they said to tell the people at the event, and i did, that they were there in spirit.  they wish people could see what it all means to them and does for them.   
 
john moderated the 2 hour event very well.  it was the first of hopefully many empowering events.  again, if this makes a difference anywhere then we've reached our goal.   
 
wilde, ty guys for opening us up a bit. and for making your mark in the world.  its a very good mark!
 
the mascot

Posted by group mascot on January 29, 2005 at 05:56 PM in Mascot's Musings | Permalink | Comments (1) | TrackBack

fridays rush and welcome back charlene!

friday we shared many many thrills, what getting the new computer up, having it fly...   being able to go our own blog as a group with time enough to post live!!  woo hooo  we were able to jointly hang on the blogs and read, discuss and contribute.

john s  shared his perfect day here in the blog, not only with the world, but also aloud to his peers...  what an interesting thing for each of us to know...  what really means so much to those around them. part of johns composition was fine tuned there as he composed.  it was actually quite beautiful and definately a huge blast for us all!  john and i wondered what a book would read like which was called 'my perfect day'  and was filled with nothing but such stories!  (=

not only did we have a flying machine on a huuuuge new monitor- 21 inch-  FREEDOM !-    (=   , not only could we go to our blog and listen, celebrate...  we also got to post ourselves in the sl forums~  what a difference having a solid computer can make!  it was almost like having twice the time !   additionally (now with all this good how can there be an additionally?  good question  ) we got to spend time on our island.  yes!!   its really turning out so kewl for us--  and looks like for others too!  (whoda ever thunk it ?? )   so much to do, so little time.  but we were zipping through!  we could tp at will.  we could im without a calling card- which we needed to do!  many good sl things.  the crew hated to go... but at least there wasnt mutany this time~    heh

yes... still more....   we were able to compell charlene to come play with us again!  (she had a great time as we all knew she would!   we looooooove charlene!  i wont say much about her till shes more into it-- but she reaaaaally rocks!  she's just so wonderful and brings so much life to life.  i will say shes wicked smart, has a sharp witty side, and an infectious laugh!   we were soooo happy!   we teased her that she's being too stuck up to play with us- everyone laughed... and slowly slowly over the course of our play she began to get into it.  to taste it and see how rich and sweet it was.  omg world-  should charlene get turned lose on ya'll...  look out!  she'll ROCK the world!  heh~ 

it was so nice to have her with us, sharing all this.  having the computer with sweeter graphics i'm sure helped... wasnt as slow maybe or hard to follow.   whatever the reason we hope we have her hooked.  i cant help wondering what these new freedoms would bring to her... the good she'd realize from oh so many venues!  come... charlene.... come~   

friday was a sweet sweet day for the members of wilde.  the computer and the virtual community made so much possible for us.   it made for a very rich day.   heh, all that and they still had time to give me a hefty to-do list for them!   

point to ponder...  what if people like my dear friends all over the world were set free?

isnt this kewl?

Posted by group mascot on January 29, 2005 at 09:42 AM in Mascot's Musings | Permalink | Comments (0) | TrackBack

communicating with a non-verbal person

there are sooo many ways a person who cant talk, or talk very much, or talk very well, can communicate.    those who can, use the speech they have, to the best of their abilities in addition to  combining other methods.   they are quite adept at it.   i think it often takes greater intelligence, and a bit of art, to communicate on their part, more so than it does for those whose speech flows like water.

what are some common methods non verbal or verbally challenged folks use to communicate?

the most reknown is body language.  i tend to think that term is weak though.  at least in relationship to folk who lean on it when words fail them.  for these countenance and eye contact come more into play.  so i'd like to call what they use to speak as facial language.  one of my group can look at me and i know they have a question, a problem, that they agree, disagree, are confused are elated, are bored to death  all at a glace from the neck up.   i can tell if they are satisfied with something, hungry for more, scared, or eagerly engrossed.  infact, a face can communicate a very large spectrum of messages.  this simple form of listening takes only that to become good at... listening.   

other common methods are communication boards, or books, filled with pictures and symbols they point to when they have something to say.  or perhaps give a verbal affirmation you are correct, if they cant point.  check out scotts post on 'a word with scott'.   while these symbols may be exactly what they want to say 'i'm hungry', or 'call my mom', they are also used to steer direction.  'it has something to do with your house', or 'your having problems with bla bla bla'. communication boards and books are invaluable for those who use them.  nonetheless they contain lots of empty spaces despite heroic  efforts.  one board or one book can NOT adequately reflect what a fully matured, intelligent trapped soul may want to say.   YET  it beats no communication device at all.

some are fortunate enough to know and be able to use sign language, or a home grown version all their own.  sign language whether formal, regional, or home grown  can be learned by the willing.  actually its a quick learn as its often visually simular to what they wanta say.   3 members of live2give incorporate home grown signs into their verbal communication.  one example is lifting a fist to an ear to communicate telephone.   

i'm gonna gloss over those who can use a computer or computer device.  those who are lucky enough to have the  ability and the equipment to do so are to be envied.  not to say it still cant challenge the user, for it remains very time consuming.  often just the learning phase to become adept is painfully slow.   if they use an adaptive switch to operate the computer it should be pointed out that this method can still take a good chunk of time to get the message out.    all communication for the non verbal takes the effort of a warrior and the patience of a saint!

which brings me to my final focus on communication methods,  this is the one employed most by wilde.   its a composite of facial language, boards when applicable, and the related idea method (question/answer/multiple choice).  i think for simplicity i'll call it the homogenized method.

this method utilizes the speech ability of the individual ('yes's, no's',  'short phrases',  'very long stories for those able' ), integrates facial language or perhaps home grown sounds symbolic of understood responces, and brings in the related idea method where one offers up every sort of multiple choice or related idea that the communicator may wanta lead them in.    the latter is one we use a lot.   it opens up far more possibilites for them to make comments on.  it also leads directionally for someone who has something you'd never guess to say.   they steer facially or with their words.   they lead clearly as you know quick what to rule out by their feedback.  they want you  to understand and they make sure you do~

using this method is empowering and freeing for the communicator.  its so much easier for them to simply affirm or reject the related idea, than to get you to understand their long explanation of what they want.  in some instances its like playing 20 questions, but shooting more for catagories than specifics at first, narrowing it down until you come to something very close to what they want to express or lead ya in.   for example, i'd ask  'is it related to the program in anyway (staff peers activities etc)'.  i would not begin by asking 'did you forget your lunch?  or 'did you wanta get on the computer?'   

now the better you know someone the faster you are at this knowing what is already of common interest in their world ( their family, their health, and regular topics of interest to them).  what these suggestions would look like vary from individual to individual.  its also situationally specific in relationship to the time involved.  for example, if your doing something abstract or creative  your related ideas will have to be equally abstract or creative. 

while this method holds the potential to be very liberating and an excellant method for them to communicate, it does require both time and patience from both the communicator and the listener.  it also takes effort from both to follow it through to the end of the matter.   

this is how some of wilde communicate.  not only is it their prefered method, but they are quite adept at it.   while it shouldnt be a surprise, often one is surprised by how much they are  willing to speak and share, if they have a listener.   communicate they do!  communicate well they do. sometimes it may take much effort, time, and strain.  other times it freely flows and theres no noticable lapse of time to communication.   the longer you work with someone the more there is of the latter.

for those of you who wanted a few glimpses into communicating with non verbal or verbally challenged people, i hope this helps some. 

my objective is to let their words come out their mouths, and freed them to share their own ideas in their own name. 

for better or worse
the mascot

Posted by group mascot on January 27, 2005 at 07:17 PM in Mascot's Musings | Permalink | Comments (1) | TrackBack

just incase you didnt notice

theres are catagories of blog entries on the left side of this blog.  one of them is composed just of writings from wilde.  these will be added to regularly. the total of their entries will not show in this main list as it only keeps the newest entries on the top.

so if you wanta see what they have to say, and are saying, thats a great way to get the whole tamale~ 

ty for visiting our blog~   your coming here, even tho you may not see it, makes a difference to them.  someone is reading, someone sees, someone cares!

(=
the lil mascot

Posted by group mascot on January 27, 2005 at 06:15 PM in Mascot's Musings | Permalink | Comments (0) | TrackBack

the computer has arrived!

the new computer has arrived~  share our joy!!   woo hoo!  we plugged it in at the end of the day and is up and running for tomorrow!  we zipped into sl for about 10 min long enough for me to show them the difference i'd been telling them about and point to the buttons we werent able to see or access before.  the room was filled with squeals of delight and the look on each face was priceless!   no more second rate playing now!!  no more needless crashing when trying to fly about!!  life is good~  and second life, for as great as its been, is about to take on a whooooole new demension!

ty so much to everyone who helped and supported them during the 'before' days.   we are now in the 'after' days~  and a great deal in part to YOU!

hugs~
the mascot

Posted by group mascot on January 27, 2005 at 05:45 PM in Mascot's Musings | Permalink | Comments (3) | TrackBack