Ride for Life: Chapter 1

Weeks have passed since my last post here. Since no one demands stories from me, I find it easy to procrastinate. But, for the NOBODY who are itching for new stories, here is my first draft of the first chapter of my most recent book attempt. 

I hope someone finds this blog and starts demanding more writing from me. 
It’s longer than my average story…but that’s because it’s a chapter to a book! Enjoy…

The Meeting

Screams came from beyond the door. He smiled a quivering smile with knowledge that these screams could just as easily be happy screams as ones of a more distressing nature. Like Schrodinger’s cat, knowing which was truth and which was mere fantasy dancing in his head required opening the door. With a sigh, and hopeful held breath, he did.
Walking into the bare room, it was difficult not to notice the dirty mess of a man at the head of a plain table. People he assumed were physicians and experts of differing fields adorned one side of the table to which the disheveled man headed. Each person was well dressed or at least casually appropriate for a meeting of this sort. That, of course, excludes the pile of caked dirt at the table’s head. It was equally difficult for those seated at the quiet table not to notice him coming into the room. They all turned in his direction, making him dip his glances to the walls of the room diverting direct eye contact.
Part of him hoped that the vagabond at the head of the table was John Birmingham. If not, one of John Birmingham’s physicians needed to reconsider his overly Earth-friendly ways. Another part of him hoped it was not John Birmingham. If it were, it was clear he had bitten off more than he could chew. Then again, he never witnessed an intake. At least not an intake for a person entering the system for the first time. To be clear, John Birmingham was no stranger to the system. No, John Birmingham grew up in the system early on. But, in the eyes of the state of state, John Birmingham was green behind the ears. Both because this was his first intake in this state and because John Birmingham was, as it was so unabashedly put in his legal documents, of a diminished mental capacity. Because most people entering the system are planted into the system at birth, near birth, or certainly by early to middle childhood, and because the man who entered through the door only worked with adults to this point in his career, a new intake such as this was something foreign to him.
“Ah,” said a man at the far end perched opposite the dust ball shell of a man, “I was just telling everyone about you. Please. Sit.” The man opposite the dirty man at the far end waved for the man who just entered to sit opposite the experts just to his left. Fluttering the same unwanted smile, he started to find his way to an empty seat. “I was just telling John here that you are going to be his new direct support staff.” With his other hand, the man pointed with an open and friendly hand to the dirt pile across from him.
Before the direct support staff could get passed the line of well-dressed experts, the one closest to him stood, extended his hand, “John Birmingham’s PCP”. They shook hands. Most likely out of felt necessity, the others stood one by one, “Birmingham’s case worker,” “Birmingham’s SLP”, “John’s BT”, “and you know me, I’m your boss,” said the man sitting opposite John Birmingham with a humor that broke the business niceties and brought an ebb of light chuckles. Out of habit and assumed courtesy, John’s direct support staff extended his hand to the filthy creature of a man at the head of the table. With a puff of dust and a cloud of month old sweat and weathered clothes, John Birmingham leaped, stumbling, catching himself with his waist on the edge of the table for stability, and snatched up the man’s inviting hand, laughing a toothless crazy old man laugh. John’s free hand shook as it pointed at their handshake. His direct support staff started to take a step back in surprise but stood his ground fearing he would look put off, which he was, but it was his job not to appear that way. For John’s sake.
It was several minutes of wheezy ear-piercing laughing from John before he calmed enough to give his direct support staff back his hand. As he finally found his way to an empty seat, he caught his boss staring at him and smiling a proud smile. His boss patted him on the shoulder a couple times before speaking again, “John, you can sit down again if you’d like.” This sent John screaming in laughter to the point of turning red. After a while more of pointing at his new direct support staff and pretending to straighten a non-existent tie around his bushy neck, he finally sat down again. His gurgling laugh faded away but his toothless smile remained.
The boss started in again welcoming everyone to John’s intake, though he made special effort not to call it such. Instead, he began began calling the meeting an Individually Specific Plan. Heretofore, he said, was to be called an ISP. As he so tenderly spoke the acronym he peered up and down the row of experts to his right. John’s direct support staff wondered why his boss stressed ISP to intake and why he seemed to stare down his colleagues across from him. Being the newest one to the trade in the room and not wanting to step on any toes too early on, he returned his attention to his notebook in front on him, pretending to jot down something important.
The boss thanked all for coming. Each expert straightened themselves up as each was introduced to John. His tone remained inviting and unassuming no matter who he spoke to, or about. “You remember your doctor, John. Right?” While John nodded in the boss’s direction, his doctor interjected, never taking his eyes off the boss, “PCP, actually. I’m his PCP.” Never taking his eyes off John, the boss noticed John’s apparent confusion to this new term. “I apologize. You’re correct. You remember your doctor, John. Right? Your Primary doctor?” John’s nod became more animated and accompanied by a loud “Oh” that sounded more like someone getting kicked in the stomach than an exclamation of epiphany. The direct support staff looked up long enough to provide a modest smile and nod to the PCP. “To his left, John, is your new Speech Language Pathologist. He’s going to help us communicate with you better and help you help us understand each other.” John chuckled. His direct support looked up from his notebook to nod at John’s new Speech Language Pathologist. “Next is your job coach, John. She is going to help you find a job. Would you like to have a job, John?” John stared blankly into the boss’s face, still smiling his toothless smile. “You want money don’t you, John?” John screamed an ear piercing “Yeah” to which the expert not yet identified growled and nursed their ear drum. John’s other three other experts cringed with disgust or discomfort, it does not matter which. The boss never lost his smile nor flinched, “I thought you might. She will help you with that.” To which his job coach added, “Let’s not get carried away with ourselves,” as she glared at the boss, “we have no way of knowing yet if this man is capable..”
The direct support staff looked up from his notebook with scribbles of job titles and descriptions as they were given to see his boss’s attention leave John and focus on his job coach. “You mean, John?”
The job coaches voice tightened, “To whom else would I be speaking? That is why we are here. Is it not?”
“Ah. Right,” remembered the boss, still speaking with an inviting tone though the direct support staff wondered if he heard something else also. “Though we have not ascertained everything about John here,” the boss brought his attention to John briefly before returning to his job coach, “We have ascertained both his gender and his name, oddly enough. It is, therefore, fitting to reference both while speaking either to John or about him. Wouldn’t you agree?” Head cocked back a fraction, her brow furrowed, “I was only asking for a little more patience and a little less over excitement.” “Today is a pivotal moment in John’s life,” he returned his attention to John. “There couldn’t be more reason to be excited and optimistic.” John added a gurgling giggle at the boss the way an infant giggles at a mobile.
“Of course, you’ve already met your new direct support staff, John,” his boss said, pointing openhanded at John’s new support staff. His direct support staff looked over at John. Staring at his new support staff long enough to make his support staff uncomfortable, his smile widened as he gurgled what the direct support staff assumed was John’s way of saying “Awe shucks” without the fine motor skills necessary to form such complex vocabulary. They smiled at each other.
“And I’m your direct support staff’s boss, John. Your new staff is only part-time, John. He will only be working at The Club for about twenty hours a week. Because of your newness to our organization and because we don’t know each other very well, I feel it’s best if your support staff be able to focus on working with you. You will be his only client.” Pointing directly at John rekindled his gurgling crazy-man laugh. John pointed back at the boss and yelled an open-mouthed “You”. He did this several times, annoying his job coach to his left enough she placed her hand over his shaky pointing finger to quiet him.
“Individual,” interjected the job coach looking down the table to the boss. Here we don’t use the term, ‘client’, it’s too impersonal, too clinical. Here we focus on the person. That’s why we’re here, the ‘individual’”. This comment broke the boss’s otherwise inviting demeanor. “Right you are. That is the term used here at The Club. But why don’t we get started, shall we?” Each expert mumbled a yes, to which the direct support staff followed suit and was the owner of the voice that trailed off last.
John’s PCP spoke first, explaining John’s mental capacities were “limited at best.” Mild mental retardation coupled with the accumulation of years of alcohol and cocaine addictions mean John hardly grasped complex concepts. Likewise, the individual appears to have difficulty focusing on anything that is not directly in front of him. The PCP also concurred with archive files that report the individual suffers from a relatively mild form of Cerebral Palsy, explaining the individual’s inability to speak basic words and the individual’s shaky extremities. He explained that the individual’s oral hygiene, obvious to all at the table in scent and visual proof, demanded immediate attention. Though the individual had few teeth currently, this appears a recent occurrence. What teeth did remain likely needed to be extracted. There was significant rot and significant gum degeneration. Without being able to hold a conversation with the individual, the PCP continued, it is difficult to make any further assessments as to the individual’s current conditions. Perhaps, he concluded, the SLP can shed some light on what the individual is trying to communicate with us. It does appear he is attempting to communicate through sign language but I am not well rehearsed in ASL.
John’s SLP chimed in with an air of disappointment. He explained to the PCP that the individual did appear to be signing something and appears to know a relatively large vocabulary. But none of it is proper ASL. It is likely, he continued, that the signs he used were based on a language he and either his foster parents or foster siblings created to speak with him. Turning his attention to the boss at the head of the table he added the obviousness of necessity of long term therapy sessions to try to decipher the individual’s own language and train him in proper ASL so he, the SLP, could then train the individual’s direct support staff.
By this time, John was sitting up straight with his hands on the table attempting to twiddle his thumbs similar to what the boss across from him was doing. He looked out at the boss, back at his own hands, giggled with pride that he too looked important and dignified. He looked to his new support staff, tapped his shoulder with a shaky hand and gestured with his head to look at his dignified appearance. His direct support staff nodded, smiling at him. A voice in the direct support staff’s mind let him know his new relationship, his new client, was going to be more fun than work.
While John’s job coach spoke of nothing of great consequence since she felt it too early to consider the individual for any sort of job prospects nor had she seen the individual prior to this meeting, so she knew nothing of him or what interests stored themselves in the individual’s mind, the direct support staff started to notice the peculiarity of the language each expert used. Always ‘the individual’, never John, never Mr. Birmingham. Looking through his short list of notes, he recalled the job coach reminding his boss that ‘client’ was an inappropriate and impersonal term not used at The Club. Clear to him now, ‘individual’ was The Club’s term. He began scribbling ‘individual’ across his notebook pages. Twenty-one times at least, he thought. Twenty-one times of repetition before something is chiseled into the brain. Being a new job, he wanted to ensure usage of this new term. Slipping up one too many times with ‘client’ could have compromising repercussions; repercussion he did not wish to experience.
This new term made sense to the direct support staff. Subtract any clinical terminology in place of more individualistic, humanizing language. Doing so, he thought, probably forces one to see the client, the individual, as a human being rather than a patient. Likewise, it likely makes the client, the individual he corrected himself internally, feel more at ease. It shows a certain humanizing respect for the client, individual he repeated to himself again.
“Now then, John,” the boss began again, having returned his demeanor to its pleasing tone of invitation, pulling the direct support staff from his thoughts, “this meeting is all about you. Our job is to make sure you lead the most positive, constructive life you want to lead. Our job is to help you get out of life what you want to get out of life.” To this John started chuckling again with his watery crooked tooth laugh, pointing at the boss. “What is it you want to do, John.” All John did was continue laughing. “What is it you like to do? Fishing? Reading? Do you want learn to cook? Do you know how to clean your room? You’ll be living in your own apartment in this facility. It will be your responsibility to keep your apartment clean.”
John stopped laughing appearing as he had just witnessed a ghost. Squeals that could only be deciphered as either something akin to a “really” or a “what” any number one to two syllable words to express exclamation jumped from his cracked lips. His eyes widened so much his job coach made a move toward him, assuming to help the individual keep his eyes in their sockets but pulled back, also assuming, at its absurdity. Then she spoke.
“I must object to this,” the job coach said, pulling her hands back to the table’s edge where they grabbed for stability. With calm of a teacher trying to keep a rowdy group of teens from becoming unmanageable, the boss asked John’s job coach to explain herself for clarity. “Absolutely,” she began, clearing her throat. “This individual…” “John,” corrected the boss. “Yes. He exhibits no capacity to understand even the most basic safety precautions and appears to have no functioning fear of things that could harm him. Alone he could hurt himself beyond repair.” She then placed her hand gingerly on John’s shaking attempt at twiddling his thumbs before continuing, “This little guy needs our full support now. Not coaching. He needs to be cared for.” She began to tear up, her lips quivered. “He’s so fragile at this point in his life. If we are not careful, things could only get worse for him.” The other two experts concurred with quiet agreed’s and unequivocal nods.
John exclaimed something at the sight of his job coach beginning to cry. Without warning, he popped out of his chair clumsily enough to knock it over and hobbled over to a small side table where, among other things, sat a box of tissues which he returned to his job coach, box held in both shaking hands. Her lips flickered as violently as his own muscles did, she mustered a whispered a thank you to him as she pulled a tissue and blew loudly. John began laughing again at this making his job coach giggle through her tears and soggy tissue. “Unfortunately for John,” the boss stated comfortingly, “the state does not see it the same way as the rest of us. And with current funding as it is, there is no choice but to leave John in Independent Living.” The job coach slumped over somewhat, all the wind sucked out of her. “To be sure,” the boss continued, “With John’s direct support staff focusing his efforts exclusively on John’s needs, and John’s living on-site, endangerment will be minimized to the best of our abilities given current constraints.” Noticing this explanation insufficient for the job coach, or for that matter the SLP and PCP, he added, “At John’s six month review, we can revisit this issue then. By then, if more comprehensive support is required, we will have evidence and legitimate cause for requesting more funds on John’s behalf. As it is, our hands are tied.” Glancing back at John, “As it is, I believe John will thrive just fine in our facility under part-time care of his new direct support staff. So, if there are no further concerns? Great. John, what do you like to do?”
His cheeks wrinkled around his mostly toothless jaw as he stared skyward for something floating around his mind. “Anything at all, John. The world is your oyster,” the boss continued in his usually touching tone. One finger points to the ceiling as John’s eyes go wide forcing his weathered dirty skin to collect by their respective temples. Then he extended both fists in front of him as if grabbing handlebars to some imaginary bicycle. “You want to learn to ride a bike, John?”
“Let’s keep these goals reachable now people,” interjected his PCP.
John yelped, looked skyward again momentarily, proceeded to hop on his imaginary bike again but this time adding what could only be described as engine noises behind trembling vocal chords and cocked his right wrist several times.
“A motorcycle?” This was the first time since his introduction John’s direct support staff spoke.
“For heaven’s sake! You can’t seriously be entertaining this fantasy.”
“Well, we can certainly work in that direction, I think. The end result wouldn’t happen next week for sure,” the bass assured John’s PCP.
“For the love of all, this person…
“John.”
“…has Cerebral Palsy. He’d be lucky to comb his hair without stabbing himself in the eye. This individual…”
“John.”
“…could not possibly operate a motorcycle. His gross, let alone his fine, motor skills are far too compromised.”
“The Club,” the boss retorted, “values all its clients’ wishes, dreams, and goals.” Seeing all three experts open their mouths to argue he added, “Granted, some goals are lofty and difficult. That doesn’t mean we can’t help John here get as close as he can to his goal. Our job is not to tell him what he can or cannot do. We are here to ensure his health and safety first and secondly to encourage and assist our clientele with their life goals.”
Pounding his finger into the table with every syllable, John’s PCP glared at the boss, “I want it made perfectly clear in whatever documents your organization is required to produce that the individual’s Primary Care Physician is adamantly against any motor vehicle operation by said individual.” Chuckles gurgled from John’s wrinkled lips. His direct support staff could not decide if John knew what was being discussed and found his PCP’s anger funny or if John was oblivious to said discussion only laughing out of discomfort or laughing at some other movie playing out in his mind’s eye. After all, he himself was quite uncomfortable with such anger thrown around a room full of experts and colleagues.
“You have my official word,” the boss said in what the direct support staff guessed was slightly more stern voice,”your opinion will not be absent from any report where it’s presence would be of any potential use.” The boss repositioned himself leaning in and staring across the table straight at John. “So you want to ride a motorcycle, do you, John?” His direct support staff was certain John’s neck would snap with how ferocious his nod jostled his head around, clicking flecks of sand or dandruff in his direction. John’s PCP huffed but did little more. “Very well then. How about health goals? Do you think you need some help with personal care?” To this John just chuckled a drunkard’s chuckle, still staring back at the boss. “Perhaps your new staff can make sure you understand the basics?” John yelped, pointing at his direct support staff wide eyed and shook his head. With his left hand, his direct support staff noticed John motioning an open and close, open and close chomping with his pointer, middle finger and thumb. “He wouldn’t be in the shower with you, John. He will just prompt you in the morning, make sure you have shower gel, wash cloths, shampoo. That sort of stuff. You’re considered independent here, John. You don’t have to do anything you are not comfortable doing. How does that sound?” John’s left hand stopped eating air. His direct support staff thought he appeared pensive, though John’s PCP made it clear he thought John incapable of such tasks. It was the boss who broke the silence and not-so-muffled sighs exchanged between each expert, “I don’t know if you’ve seen yourself in the mirror lately there, John. But you don’t look like you’ve showered in some time.” Any other situation this comment would instantly be read as vulgar and uncouth. As it was, the boss said it with light-hearted ease. John laughed, slapping the table with both hands.
“That settles that, then. Your new staff here,” the boss pointed with an open hand, his direct support staff nodded coyly, “will make sure you have all the proper supplies and will set you off to shower alone of course.” Sparking more drunken giggles from John.
John’s behavior support consultant spoke, “I can work with the individual…”
“John,” the boss corrected.
“…to find out where he stands in terms of understanding kitchen safety, use of his stove, microwave, find out how much he understands cooking. I assume he’ll have to feed himself. Correct?”
“That would be correct.”
“I will then ask your new staff to sit in on one of my visits so I can then train your staff on the individual’s behavior and cognitive impairments and some potential support strategies that will require more frequent attention than my once a week therapy sessions.”
“Shall we say about three weeks then. So, around May 20th, you’ll meet with John’s support staff and John for a training?”
“Three weeks should give me a decent understanding of the individual.”
“John,” the boss’s broken record politeness continued. The behavioral support consultant asked John’s staff if May 20th would work, he nodded.
“It’s settled then.”
John’s direct support staff watched everyone flick their wrists or tap their cell phones awake, each looking for the time. Too nervous to realize any significant time had passed, he suddenly became curious, but didn’t look for fear of appearing antsy or disinterested. Instead, following his actions throughout the meeting, he waited for direction from his boss.
“If there is nothing further, then?” chimed John’s PCP.
The boss concluded there was not, that each of John’s goals, those of joining a motorcycle group, basic hygiene prompting, shopping and meal planning supports and perhaps a job in the more distant future were sufficient to disband. All would reconvene in six months to discuss progress and potentially edit John Birmingham’s goals.
John’s PCP, BT and SLP stood, collected their things, each making their way to the door. John’s direct support staff saw John watching everyone leave with a furrowed brow. Tapping his shoulder, John gave a quizzical grunt to which his support staff told him his meeting was over. Maintaining a confused look, his support staff pointed to an imaginary watch on his own wrist and pointed to the door to which John gave a screeching “Oh”.
“That’s not proper ASL.”
Picking up on his employee’s confusion the boss interrupted, “American Sign Language.”
“That’s what I said,” said the SLP.
“Perhaps at your third weekly visit, you can begin to teach my staff here some ASL, or perhaps, the signs our new guest here uses?”
“Do you mean to tell me this person doesn’t even know sign language? And he’s working with this individual?”
“John. And, yes, that’s what I’m saying.”
“Surely you’re joking. It’s bad enough this individual…”
“John.”
“…doesn’t know proper ASL. You have to bring in probably the only staff who doesn’t know Sign?”
The support staff interjected an “I know my ABC’s” too soft to be heard. Though, he wondered if his boss and the SLP were not concerned with each other too much to hear even the siren blaring that rolled by at that moment.
“Well, if, as you say, Mr. Birmingham does not know proper ASL, it should not disadvantage anyone that his staff does not know ASL.”
“But how are they to communicate?”
“They appeared to do just fine throughout the meeting.”
“Neither one said a damn thing.”
“Didn’t they?”
“Whatever. Three weeks,” she spat at the direct support staff, “Three weeks and I’ll start working with both of you. God help this individual…”
“John.”
“…before those three weeks are up.” She stormed out of the room leaving John Birmingham, his direct support staff and his boss. The staff pretended to continue packing his things though they were already packed in hopes of receiving instructions. His boss turned facing John, made unknown hand gestures ending with him pointing at John. John grunted and laughed hysterically like a dying smoker, wheezing and all. A few more hand gestures from the boss and John sat back down nodding, and smiling as if he knew something no one else in the room knew, his cheeks a bunched up pile of dirty bedsheets attached to both ears.
“You,” the boss pointed at the direct support staff, “Come with me for a moment.” Stopping in the doorway, “That sounded harsher than it needed to. I apologize. These meetings take a lot out of me.” The direct support staff followed his boss to his boss’s office before being handed a think, beaten book titled “The Complete ASL Dictionary.”
“But I thought,” started in the direct support staff.
“Mr. Birmingham appeared to understand me just fine a moment ago. She just doesn’t listen when people Sign.” Then his boss uttered something under his breath.
The direct support staff’s heart sank realizing he had to memorize this behemoth of a dictionary just to understand his client, individual, John. Already having read John’s intake folder and sat through a long meeting he was not looking forward to a sleepless night of monotonous reading.
“I don’t expect you to read the thing cover to cover. But it should help you two understand each other as time goes by.”
Much relieved, he thanked his boss quietly.
“How well do you know your ABC’s? In Sign Language, of course.”
“Okay I guess. If you Sign slow enough, I think I can get by.” He tried to run through the signs in his head. Too much was going on though, his boss was watching, his palms went soggy, his mouth dry.
“That’s alright. You too hit it off just fine.”
“Sir, we hardly spoke.”
“Didn’t you notice?” The direct support staff answered with a perplexed look. His boss chuckled politely, “You were the only one to address Mr. Birmingham directly.” He dropped into his chair behind his desk. Louder, he said, “Hell, you were the only one in the whole room who shook his hand.”
“But sir, I was just…”
“Exactly. You were just. Just being polite. Just treating John Birmingham like a human being. Like a client.”
“Like an individual?”
“Careful how you use that term. But yes, an individual. I real, straight-from-the-heart individual with feelings. Either way. Now, if you don’t mind, I think our new guest would do well to get home and get some rest. This is probably the most excitement Mr. Birmingham’s seen in some time. I trust you remember where the The Club’s Independent Living complex is?”
“Yes, sir.”
The direct support staff stood in the doorway quietly until it’s silence was too uncomfortable for either of them to bear. Luckily for both, Mr. Birmingham cried out. His direct support staff used this as his out and left.

In the car, John Birmingham’s direct support staff jotted down all appropriate information on a mileage log while waiting for John to fumble with his seat belt. Cerebral Palsy robs one of fine motor skills even at mild levels, he remembered. After several gut wrenching minutes, his direct support staff reached out, “Aaaaayyy.” Scared, he pulled back. John signed what looked like a chomping bird with his thumb, index and middle fingers, staring his new staff down hard before smiling and cackling. John grunted something his staff took to be “Me”. Tongue attempting to hold his hands steady enough to clasp the buckle himself, he worked at it several more minutes. Months of not bathing prickled the support staff’s nostrils. Breathing through his mouth only overloaded his taste buds with John’s filthy scent. His eyes began to sting. He wondered how he would make the ten minute trek to the edge of town where The Club apartment complex stood. Each breath cut exponentially shorter as molecules of sweat and dirt drilled at every opening. Too afraid to hurt John’s feelings, he refrained from cracking a window.  
It latched.
John looked up at his new support staff with bulging eyes. Then he positioned himself seated up straight as if prepping for some roller coaster ride.
His smile of pride made his support staff smile. What resilience, he thought. What patience. The direct support staff knew he would have lost his temper throwing that damn buckle long before John succeeded in fastening it. Perhaps he could learn a thing or two from his new client.
Unsure how to ask the deaf if they were ready to go, he tapped John on the arm and just asked in English. With gurgling chuckles, John nodded, bracing himself against the car seat.

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