keeping the faith in the cold dark night

keeping the faith in the cold dark night~
by john s
i heard voices in the cold dark night
telling me all was lost
telling me my hopes and dreams were going to fall
i saw shadows in the cold dark night
they lied to me
horrible secrets that couldnt be true
i tasted fear in the cold dark night
filled with torturers
pained torments would swallow me whole
the dawn rose in the sky
i uncovered my head
as it chased away things of the night
till brightly it warmed my soul
stilled my heart
filled with promises of hopes and of dreams
yes surely

by john s

Posted by group mascot on June 19, 2005 at 05:58 PM in john s's writings | Permalink | Comments (2) | TrackBack

second life for the world! by john s

second life for the world!  by john s

i wanta write to my peers that they have hope, inspiration, and direction. i wanta write to non-disabled world to give them insight, knowledge and to provoke them to action.  the internet offers so many tools now.  there are so many ways it can help.

right now i have two primary places i visit when i'm online, second life and our blog.  i've also used the internet to study countries and current events.  these days i'm eager to interact with the world in my small allotment of online time. second life and the blog are equally important to me for different reasons. they have both increased my personal sence of self worth. they offer channels to contribute what i have to offer to the world. everyone hs something to offer. my virtual self has the voice i've always wanted to have and in many ways it allows me to be the person i feel i was born to be.

i wish i had a computer at home so i could be online more. i also wish i had a staff who knew how to use it and would run it for me. infact i wish this for all the disabled who want a voice because of all its done for me.  we need more people who can lend themselves to drawing us out and assist us with technology, type what we want said, follow our directives, be our hands.  the world needs more people like my mascot who find joy in doing so.

if i had unlimited access to the internet and a computer i would begin investing my time learning, blogging, playing sl(second life), take a graphics class so i could create expressive artistic thngs, i'd write about my experiences, the many lessons i've learned, i want to share this with the world. 

some specific things i've gotten from sl and the blog. (not a complete list) i feel i have the chance to meet folk and potentially form quality friendships. i can create things i see in my imagination. i feel respected. its my chance to be seen and known. i feel like i suddenly count. i've learned new computer skills and feel it lets me get my voice out. its given me a way to give back to my dayprogram (helped get them the new computer). it gives me a chance to hear back from others how i effect them. i'm excited to speak to the world. i want them to hear and know. i'm hopeful for what it will grow into.

its like being rescued after drifting what seemed like a lifetime at sea. like a huge and heavy weight being lifted. i'm expectant and hungry for the more! like a door i've been banging on was finally opened, or like being born for the first time. it feels like what i imagine it would be like to suddenly be able to walk. or how i imagine an innocent man whose been locked up wrongly feels when he's finally set free. at times i just want to cry. i feel like an artist with a paint brush. i fill with excitement and wonder when i think of the future now.

it gives me a chance to call my own shots. most 32 year olds are allowed to do that without question. for me people are always talking about giving me choices and empowerment, but all too often they just take it away! then they expect me to feel good and put my seal of approval, my blessing on the process.

thinking of the future there are many things i hope will happen.  i'd like to see an exodus of people leaving the boxed in worlds we have known our whole lifes and migrating to the new world... the virtual world... the internet...  where they can know what i have known.  we hear that platitude that we are not our bodies.  using the internet allows us to not be only our bodies.  it feeds the soul and allows it to manifest itself however it seems fit.

i'd like to see more people equiped with both hardware to support their assorted needs, as well as train up caregivers who act like human interfaces as needed.  these caregivers looking into the heart and soul of the people they work with becoming their hands, their voices, operating their computers when necassary.  not just people who will cook for us and clean for us, but who see us inside of ourselves and assist us in being who we were born to be, and who ENJOY  it!

a personal dream i have is to see something simular to the brain computer interface technology released to the masses.  a computer chip implanted which we can use our very well developed brains (via brainwaves) to control a mouse, a keyboard, and be released to the world we've been imprisioned from.  the technology is out there and slowly, ever so slowly, it grows.  i yearn to see this for many. i want it so badly for myself.   i also want such freedom for others.   

i dream we are on the brink of a new time for people with extreme physical challenges.  i see the vast online world as part of the answer.  virtual communities like second life filling in the gaps that the physical world leaves gaping.  for me, and i can only speak for myself, its been the most transforming thing to happen to me in all my adult life.  the world should know.  others should profit too.  the time is now to move forward and leave this season behind.

Posted by group mascot on February 23, 2005 at 05:12 PM in john s's writings | Permalink | Comments (4) | TrackBack

the big challenge of my life, by john s

the big challenge of my life by john s

i know i'm an intelligent man. i'm 32 and have never found a tool that will let that intelligence out. at times i knew the solution to things, but couldnt share. or had a valuable opinion but couldnt get it out. i've had questions burning inside that i could never find the answers to, because i couldnt ask them. its perplexing always looking for a way to get things out of your head so folk know them and to effectively communicate. lots of times i've had vital contributions but they could never be made.

part of the struggle is time, even when you have a listener who can actually hear you. theres rarely enough time to complete what i have to say. this is frustrating. it can easily take 30 min to isolate what it is i had to say.  sometimes things just get loose and open up... flowing even... and then some other time-oriented demand stops us cold in our tracks. i'm not ready to stop yet! i was just getting warmed up! i find these times most challenging. so many feelings rush though me.  i'm so into it, invested... finally things are getting out and then suddenly, as if totally unfairly, i have to stop. but cant you hear me?? i dont want to stop!!

i know people are busy!  i know they have OTHER things to take care of.  but... arent i important too?   and whats more urgent in my personal care needs than hearing what i have to say?  too often your tv show or phone call to your friend or juicy staff to staff conversation take front stage.  it gets old hearing reason after reason after good reason as to why something else is more important. 

its the soul of a person which makes them the most valuable.  communicating is whats the most important to me, and all these other 'supposibly' vital things ALWAYS take rank.  seems to me the most important thing of all slips through the cracks without even being noticed.  feels like the same story, day in and day out, "be patient we'll get back to that".  more often than not, no one does.  its almost more than i can bare sometimes.  why am i not important too?  it hurts me so.  i know my peers go through the saaaame things.   

we need better speech aides for those who can use no limbs and have no body control.  we need more people who can lend themselves to drawing us out and assist us  with technology, type what we want said, follow our directives, be our hands.... human interfaces.

sometimes the non handicapped miss the point on what's important in the world, or perhaps more accurately, in our world. in all the busyness they lose track of things.

yes its hard not being able to move my body the way others do.  yes its hard having to rely on others to care for my most basic of needs.  yes its been hard living my whole life unable to take myself from one room to another. but the hardest challenge of all for me has been not being able to communicate, not having someone to take the time to listen.  being denied heart to heart expressions.

i'm not angry or mad, perhaps i have the right to be.  i'm a gentle kind man, not angry.  anger has never gotten me anywhere.   what i want is for things to change.  its possible for them to change.  i want people to finally understand that individuals like myself all accross the globe are less interested in the floor being mopped than in someone hearing us, taking the time for our souls.  we shouldnt have to give up who we are just so some common task can be completed.  we're not second rate people! how do you think we feel when all too often what your busy with is your own personal stuff.  people lose whats vital and settle for what looks good.  why dont all the myriad of rules for our care include just one on listening to us each day?   

i have so much to give. it feels like its bursting out of me, like an overstuffed popcorn bag in the microwave popping and bursting.

i wanta stand up and shout, ' we are people too! just as much as you! someone take notice! someone take the time to listen! someone help us to be set free!!'

for me, and all those like me around the world, HEAR US! SEE US! CARE!  UNDERSTAND!  oh please, wont you understand?

Posted by group mascot on February 23, 2005 at 05:05 PM in john s's writings | Permalink | Comments (2) | TrackBack

john s wanted you to see

a glimpse at a real communication situation. john  asked me to share this with you all, so some might see for the first time what everyday life for someone verbally challenged can often be like; and for others that you may take comfort you are far from alone!   those who can identify first hand with this are truely communcation warriors!

~~~ part one --~

i greeted john as his driver pushed him in this am, all bundled up and jostled. i quickly relieved the driver and rushed to john with warm mushy greetings, saying the day would never be as good without him!

he smiled. i took him to a more open space to remove his jacket and get his coat off. my hands were already full so we needed a table for sure.

we take 5 minutes to unlock 4 buckles, take out one arm over a bent elbow, then lean him forward in his chair to pull it behind his back and get the other side, then reverse the buckleing and reshifting of him so his spine is straight and comfy. john has a 'i wanta say something' look on his face. and the process begins..

what john,  what ya got on your mind sweetie?  he grimaces with something he wants me to guess.   

okay, is it anything comfort related?  ie pain, discomfort, your chair being off, your physical self?   

john musters out the word no, not comforted

is it related to the program or any thing/one here? 

another strained no

is it related to your ISP yesterday?   
your group home or anyone, staff, peer/thing there?  no
is it related in anyway to your parents
hummm john... let me think....
is it related to some current event or thing you heard/saw via media?   
okay...  (i'm running out of creative ideas about now)
is it related to your drive in or anyting singly related to today, something that happened, will happen or may happen?
let me recap john, tell me if i have this all correct so far. you dont have to answer until i'm done with the big chunks. save your efforts, i'll read your face.

he listens and pushes out a weak smile

it isnt related to your physical comfort or well being. you are not in pain, have no urgent physical needs, are not in your chair in a painful manner, you dont have a headache or anything physically wrong, correct?
its not related to your big meeting yesterday, not anything that was said by anyone there which you may have thought about and need to talk about. its not related to your group home in any manner, either shortage of staff, a troubleing night, a roommate, or anything in anyway related, correct?
its not your folks, or anyone here (peer or staff) or anything here, or an activity you want to do here. its nothing specific to today... an appointment you want me to know about or something that happened or will happen, all that still correct?
and you didnt hear anything on the news which upset ya...?
i take a deep breath, pull in two other nearby staff to help me brainstorm what the catagory of his desire is, because hes no more comforted now than when we began. infact he's a wee bit more exasperated, tho we are both trying to be patient until we unlock the mystery. i'm actually wishing john lester were there to help me think cuz i knew he'd of come up with some ideas... john l is one of the few folks who natually thinks like i do.

the other staff spend 5 min and give up..

i look at the lunch boxes i'd left on the table and the pile of coats, and tell john i need to put them away while i think. he's not happy but he lets me go, but only to come right back... and i promise i will.

i think and think

all i'm drawing is blanks. 
john's not going to be stalled or put off on this issue until i unprision the thought in his mind. trying to think on my feet still...

john feels hot to me and i know he has just recovered from a cold so i whip him down to see our wonderful amazing nurse, maybe she can help us find the mystery. she's used to my pulling her in when its vital to john and i've exhausted any willing staff... sometimes between us we can come up with it. other times he's more willing to let it go after we've tried another 30 min. she sees he obviously is commited to getting this out.

she,john, and i review all the ground we've covered. he confirms all the above true. we decide to go one of the slowest routes and try to get him to spell it. his spelling and reading arent that hot, and occasionally errors are made this way in addition to it being rediculously, painfully slow.

think of the word john.  what does it start with.  do you know the name of the letter?
long pause
i dont know (meaning he wasnt sure he was right)
okay we'll lets assume you are right.  think of that letter.
loud sounds fill the hall as a group walks by and john is auditorially overstimulated, trying hard not to get upset with this endevor. i call him to focus on my voice. listen only to my voice and hold to the letter in his mind. he strains, i wait for the sound volume to drop a tad.

does it begin with a?
b? no
c?  another painstaking no
d? (i'm not likeing the speed and thinking how to speed it up)
yes!!  he lights up like a christmas tree!!

oh yay!  we all about dance! 
john, probably the next letter is a vowel.  is it a vowel john?  an a e i o or u?
i dont know (meaning he wasnt sure by the letter's name).

john think of the sound
is the next sound an..  and i go through the vowel sounds.
no it is not a vowel sound. so i race through what i think are probable letters to follow a d giving him a list of a few at a time.

finally we single out r.  so its d r.  drrrrr something. 

the nurse and i toss out some dr words, about 5 and i think there are way too many to even think of... lets go for another letter.

is the next one a vowel john, an a e i o u?  i make the sounds. 


i go through the sounds slowly and wait for his signal.

i  it was an i sound he said.  but he's not sure.   so we deduce either an e or an i.

i gotta cut back on the time, he will hit a frustration level unreal soon. 

john darlin, your doing great!!  i'm real proud of you right now~  now think of the syllables.  does it have more than one?  yes
how many?  he looks unsure.

think of it in your mind john.  i make sounds which mimic two, three, four syllables.  he says yes to 4

four??  i ask?

i scratch my head

john, are you thinking of more than one word?  (i'm sure hoping thats the case!)

i sigh and smile, okay, think of the first word. your doing great john-john! i give him a lil squeeze. now first word. it begins with dri or dre... the nurse and i list another mix of word possiblities. nope

okay john.  we think the first word has only one syllable, is that correct? 

i dont know.

lets do the last letter just the last letter of the word. i list them in groups again, singling out chunks of probable ending letters.

its a k

its a k!!   we have to be so close now!   

john, say the word for me, let me hear it...

one syllable,  great!  is it...    ......

drink!  it was drink!  omg how simple!  john you wanta drink!


i laugh... okay you can have a drink! heh~ of course you can! but-- do me a favor for future reference, lets say needing a drink is a comfort issue.

he makes a disapproving face.

it may not be a serious discomfort like pain etc, but being thristy is not comfortable and relates to bodily needs. we are gonna stick it there for the future, see why?


you kewl with that?


lets go get your drink you trooper!

john squels with delight!  i hug him and wheel him off getting him to laugh as much as i can.

--- part two ---

entering the kitchen where part of my group is hanging out, getting water (heh) mary wants to know if john is better now. she saw our first 20 min trying to unravel the mystery.

yes mary,  i say, john only wanted some water.  (i'm feeling dumb.)

mary begins to speak in her very thick difficult to understand dialect.

she says a sentence to john, and i swallow hard.   i'm sorry, what mary?  i ask.

it comes again.  i think i went pale still not hearing her message to him well.   she breaks it out to a word by word stucture.


ohhhh!  john, mary says she has an idea~
we both listen.

mary continues

i smile because i got it the first time through that time. i was really starting to dispise myself there from my OWN inability!

john, mary wants to know if you want her to ask you if you want water, then she can come get a staff for you, and you dont have to bring it up yourself, she'll just ask you.

mary's nodding with the question look, waiting for his reply.

john loves the idea of her doing that. he'd only have to say yes or no. NOT that we'd be apt to forget asking about water for some time to come, heh!

john's answer was an enthusiastic yes!

problem completely solved. mary has not only helped, but befriended and empowered john more. she feels feels better for contributing to the solution. john feels rescued from the prision of not being able to effectively ask. and NO ONE is thirsty anymore!!

i guess we can get on with our program day now.   lol..  oh, btw, "drink of water"  has 4 syllables!

john wanted you to see what a piece of his/their normal can be like.

Posted by group mascot on February 2, 2005 at 05:34 PM in john s's writings | Permalink | Comments (5) | 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

Cerebral Palsy

john s has overseen the blending of website information to bring to you an overview of cp.   not all of this is a blend from other writers, but where they did a fine job, he decided not to reinvent the wheel!   

What is cerebral palsy?

Cerebral palsy is a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy. Thus, these disorders are not caused by problems in the muscles or nerves. Instead, faulty development or damage to motor areas in the brain disrupt the brain's ability to adequately control movement and posture.

"Cerebral" refers to the brain and "palsy" to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. Cerebral palsy is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not "curable" in the accepted sense, training and therapy can help improve function.

What are the effects?

Cerebral palsy is characterized by an inability to fully control motor function, particularly muscle control and coordination. Depending on which areas of the brain have been damaged, one or more of the following may occur: muscle tightness or spasticity; involuntary movement; disturbance in gait or mobility, difficulty in swallowing and problems with speech. In addition, the following may occur: abnormal sensation and perception; impairment of sight, hearing or speech; seizures; and/or mental retardation. Other problems that may arise are difficulties in feeding, bladder and bowel control, problems with breathing because of postural difficulties, skin disorders because of pressure sores, and learning disabilities.

What are the causes?

Cerebral palsy is not a disorder with a single cause, like chicken pox or measles. It is a group of disorders with similar problems in control of movement, but probably with a variety of causes.

Congenital cerebral palsy, results from brain injury during intra-uterine life. It is present at birth, although it may not be detected for months. It is responsible for about 70% of children who have cerebral palsy. An additional 20 % are diagnosed with congenital cerebral palsy due to a brain injury during the birthing process. In most cases, the cause of congenital cerebral palsy is unknown.

One the other hand, in the United States, about 10 percent of children who have cerebral palsy acquire the disorder after birth. (The figures are higher in underdeveloped countries.) Acquired cerebral palsy results from brain damage in the first few months or years of life and can follow brain infections, such as bacterial meningitis or viral encephalitis, or the results of head injury -- most often from a motor vehicle accident, a fall, or child abuse.

A large number of factors, which can injure the developing brain, may produce cerebral palsy. A risk factor is not a cause; it is a variable which, when present, increases the chance of something occurring -- in this case, cerebral palsy. Just because a risk factor is present does not mean cerebral palsy WILL occur; nor does the absence of a risk factor mean that cerebral palsy will NOT occur. If a risk factor is present, it serves to alert parents and physicians to be even more observant to the infant's development.

Risk factors for cerebral palsy include the following: premature birth; low birth weight; inability of the placenta to provide the developing fetus with oxygen and nutrients; lack of growth factors during intra-uterine life; RH or A-B-O blood type incompatibility between mother and infant; infection of the mother with German measles or other viral diseases in early pregnancy; bacterial infection of the mother, fetus or infant that directly or indirectly attack the infant's central nervous system; prolonged loss of oxygen during the birthing process and severe jaundice shortly after birth.

Are there different types of cerebral palsy?

Yes. Spastic diplegia, the disorder first described by Dr. Little in the 1860s, is only one of several disorders called cerebral palsy. Today doctors classify cerebral palsy into three principal categories#spastic, athetoid, and ataxic,#according to the type of movement disturbance. A fourth category can be a mixture of these types for any individual.

Spastic cerebral palsy. In this form of cerebral palsy, which affects 70 to 80 percent of patients, the muscles are stiffly and permanently contracted. Doctors will often describe which type of spastic cerebral palsy a patient has based on which limbs are affected, i.e spastic diplegia (both legs) or left hemi-paresis (the left side of the body). The names given to these types combine a Latin description of affected limbs with the term plegia or paresis, meaning paralyzed or weak. In some cases, spastic cerebral palsy follows a period of poor muscle tone (hypotonia) in the young infant.

Athetoid, or dyskinetic cerebral palsy. This form of cerebral palsy is characterized by uncontrolled, slow, writhing movements. These abnormal movements usually affect the hands, feet, arms, or legs and, in some cases, the muscles of the face and tongue, causing grimacing or drooling. The movements often increase during periods of emotional stress and disappear during sleep. Patients may also have problems coordinating the muscle movements needed for speech, a condition known as dysarthria. Athetoid cerebral palsy affects about 10 to 20 percent of patients.

Ataxic cerebral palsy. This rare form affects the sense of balance and depth perception. Affected persons often have poor coordination; walk unsteadily with a wide-based gait, placing their feet unusually far apart; and experience difficulty when attempting quick or precise movements, such as writing or buttoning a shirt. They may also have intention tremor. In this form of tremor, beginning a voluntary movement, such as reaching for a book, causes a trembling that affects the body part being used and that worsens as the individual gets nearer to the desired object. The ataxic form affects an estimated 5 to 10 percent of cerebral palsy patients.

Mixed forms. It is not unusual for patients to have symptoms of more than one of the previous three forms. The most common mixed form includes spasticity and athetoid movements but other combinations are also possible.

How many people have cerebral palsy?

It is estimated that some 764,000 children and adults in the United States manifest one or more of the symptoms of cerebral palsy. Currently, about 8,000 babies and infants are diagnosed with the condition each year. In addition, some 1,200 - 1,500 preschool age children are recognized each year to have cerebral palsy.

Can cerebral palsy be treated?

"Management" is a better word than "treatment." Management consists of helping the individual achieve maximum potential in growth and development. This should be started as early as possible with identification of the very young child who may have a developmental brain disorder. A management program can then be started promptly wherein programs, physicians, therapists, educators, nurses, social workers, and other professionals assist the family as well as the child. Certain medications, surgery, and braces may be used to improve nerve and muscle coordination and prevent or minimize dysfunction.

As individuals mature, they may require support services such as personal assistance services, continuing therapy, educational and vocational training, independent living services, counseling, transportation, recreation/leisure programs, and employment opportunities, all essential to the developing adult. People with cerebral palsy can go to school, have jobs, get married, raise families, and live in homes of their own. Most of all people with cerebral palsy need the opportunity for independence and full inclusion in our society.

#        About 50 % of people who have cerebral palsy need to use devices such as braces, walkers or   wheelchairs to help with mobility

#        Around 70% have disabilities other than motor problems.

#        More than 80% of children with cerebral palsy developed the condition before they were born or within the first month of life

#        Each year, in the US, 8000 infants and nearly 1500 school age children are diagnosed with cerebral palsy

#        Approximately 1 in 1000 infants have some form of cerebral palsy

#        20% of all cerebral palsy have no known cause

misconceptions about those with cerebral palsy~

that they are not intelligent
that they have nothing to give
that they are happy to be ignored
that they lack humor
that they dont cry from the struggles at times
    and frustrations
that they dont mind the  total dependency
that they arent wiser than you in areas
that their common sence, humor, insights dont surpass yours at times
that they dont care that people are uncomfortable or scared around them
that they dont study their own interests
or excel in the history or science of some area

each soul has its own fingerprint~

special thx to the UCP website for much (but not all) of the information in this notecard.

Posted by group mascot on January 13, 2005 at 07:13 AM in john s's writings | Permalink | Comments (1) | TrackBack