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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?   
no
your group home or anyone, staff, peer/thing there?  no
is it related in anyway to your parents
no
hummm john... let me think....
is it related to some current event or thing you heard/saw via media?   
no
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?
no
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?
yes
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?
yes
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?
yes
and you didnt hear anything on the news which upset ya...?
no
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?
no
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. 

yes

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?
yes

i scratch my head

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

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!

YES! 

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?

yes.

you kewl with that?

yes.

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.

i
have
an
idea
john

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

mary continues
why
dont
i
ask
if
you
want
water?

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

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Comments

What can I say that isn't totally dumb? The amount of frustration on the part of everyone involved has got to be incredible. Something that should be so simple & that most of take for granted is so hard. Requires so much effort just to get a glass of water...how can you all be that patient? And that's only one example ...it must go all day long like that..

Posted by: elizabeth | Feb 2, 2005 11:11:08 PM

your so sweet elizabeth~ ty for that! fortunately its not like that all day everyday for any of them. interestingly it was the first time he asked for a drink out of the blue that i can think of. first times and creative things 'can' be as tricky as john shared. but often too, its easier to give up or come back to later. see scott's post on 'a word with scott'.for a verbally challenged individual it can take incredible, UNBELIEVABLE commitment, to say what they wanta say. this was the FAR SIDE of what a successful communication attempt might look like. one can have a few days in between such heroic efforts. (= thx for checkin back. we'll get a few more responces to 'perfect day' as the next few days play out. (= i cant help but wonder what would happen if suddenly john woke up free of this thing. being able to speak as easy as we do. with all thats been sculpted in him from such things- the world would have to look out! high intelligence, intense creativity, patience, and commitment almost super human.... what would that look like turned loose on the world? what marks would could be left? changes made??? there are so many like john. i wanta chant that old song, 'let my people go!'

Posted by: the mascot | Feb 3, 2005 5:25:00 AM

First of all, I'm glad it's not like that all of the time. Still it seems like it would get discouraging to not be able to get a simple spontaneous request met without so much work by all involved. I'm guessing there are times when they really want or need something but may not feel up to the superhuman effort it's going to take.
I can't imagine what it took to make those "perfect day" posts a reality.........

Posted by: elizabeth | Feb 4, 2005 12:25:20 PM

the chance to share, the chance to have someone listen... the investment of time means very little compared to that.

the experience of building this blog and their new virtual lives has been worth every moment and far more. (=

having folk read what they share lights up faces and lives in ways i have no words to express.

i have this crazy dream... that folk who in needless confinements all over the planet, would find themselves free....

lifting a torch

Posted by: the mascot | Feb 4, 2005 1:05:39 PM

and yes it can be moooost frustrating at times for folk who cant get a simple statement out and have it understood. after all, they know what they are saying!

as to the write ups on 'my perfect day' they are fully enjoying replying to that. for some its easier and faster than others.

when appropriate i use the related idea communication method i've mentioned in this blog. it really adds to their creativity without all the stress. its like driving a car when someones giving you directions. left here, right here, stop. they might not be able to drive the car but they can direct me with what they want. just takes time and a willing listener.

ty again elizabeth your comments really go a long way~ they love to read them!

Posted by: the mascot | Feb 4, 2005 7:39:12 PM

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