This blog is, in no way, intended to be humorous.
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For the last fifteen months, I have been employed as an after school mentor to a 20-year-old male whom, for the purposes of this editorial, I will call Paddy. Paddy has a rare disability found within the autism spectrum called Fragile X. Fragile X can run the gamut of both symptomatic manifestations and the severity of such symptoms. Paddy is considered a moderate-functioning autistic, with characteristics ranging from an inability to control fine motor skills, an inability to focus his eyes on any one fixed subject for more than a few seconds, to occasional and tremendous social anxiety.
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For the last fifteen months, I have been employed as an after school mentor to a 20-year-old male whom, for the purposes of this editorial, I will call Paddy. Paddy has a rare disability found within the autism spectrum called Fragile X. Fragile X can run the gamut of both symptomatic manifestations and the severity of such symptoms. Paddy is considered a moderate-functioning autistic, with characteristics ranging from an inability to control fine motor skills, an inability to focus his eyes on any one fixed subject for more than a few seconds, to occasional and tremendous social anxiety.
This social anxiety manifests itself in any number of ways. Sometimes it is simple shyness, reluctance to speak or be noticed. Other times, this social anxiety causes Paddy to nervously fiddle with small objects in his hands. These objects are often comforting to him, things like paper or compact discs. His anxiety is known to gradually grow in immediacy the longer it is ignored. So much so that instead of fiddling, he will feel the need to shred the paper or shatter the compact discs. The physical manifestations of Fragile X are minimal, secluded only to slightly bulbous extremities (fingers, toes, etc.), enlarged gums causing smaller exposed tooth space, a shrill effeminate voice and loose, weakened joints in the wrists, ankles and knees causing a disjointed loping stride and comportment.
This is Paddy.
This is Paddy.
According to friends, family and educators who have known Paddy his entire life, this is how he has always been. This is the person whom I would spend upwards of thirteen hours a day with for over a year.
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I interviewed for a position in a special education program based in the wealthy Western suburbs of Boston, Massachusetts. The program specialized in college-age students with varying forms of disabilities. Although the students within the program were high functioning, they were certainly not college-bound. The parents of these students wished for them to grow in independence and sought out our program for teaching both professional and life-skills. The program itself spends more time finding and overseeing jobs for our students than teaching the major school subjects inside the classroom. I had several years of teaching experience with various grades and ability ranges, but nothing in special education. Upon receiving the position in this program, and proving to my superiors that I was more than capable of doing the job adequately, I was determinded to expand my responsibilities to after school care. Instead of teaching job skills, I would now be asked to teach home and social skills to the student. I was extremely interested in doing so and interviewed with Paddy's mother for the position.
Upon first meeting Paddy's mother in her luxurious suburban home, two things struck me immediately about the family dynamic. The first being that there was no father in the immediate picture. This was notable at the time because Paddy carried within him, very few masculine qualities and exhibited several almost satirically feminine mannerisms. The second striking observation made upon my arrival into Paddy's home was the lack of evidence that he even lived there. The house was large and lovely, without a spot of clutter or mess. From seeing him in the classroom, Paddy colored on everything, marker marks everywhere, waves of crumpled papers and ripped magazines piled around his school desk. Nowhere in the house was it clear that Paddy's mother wasn't alone.
* * *
I interviewed for a position in a special education program based in the wealthy Western suburbs of Boston, Massachusetts. The program specialized in college-age students with varying forms of disabilities. Although the students within the program were high functioning, they were certainly not college-bound. The parents of these students wished for them to grow in independence and sought out our program for teaching both professional and life-skills. The program itself spends more time finding and overseeing jobs for our students than teaching the major school subjects inside the classroom. I had several years of teaching experience with various grades and ability ranges, but nothing in special education. Upon receiving the position in this program, and proving to my superiors that I was more than capable of doing the job adequately, I was determinded to expand my responsibilities to after school care. Instead of teaching job skills, I would now be asked to teach home and social skills to the student. I was extremely interested in doing so and interviewed with Paddy's mother for the position.
Upon first meeting Paddy's mother in her luxurious suburban home, two things struck me immediately about the family dynamic. The first being that there was no father in the immediate picture. This was notable at the time because Paddy carried within him, very few masculine qualities and exhibited several almost satirically feminine mannerisms. The second striking observation made upon my arrival into Paddy's home was the lack of evidence that he even lived there. The house was large and lovely, without a spot of clutter or mess. From seeing him in the classroom, Paddy colored on everything, marker marks everywhere, waves of crumpled papers and ripped magazines piled around his school desk. Nowhere in the house was it clear that Paddy's mother wasn't alone.
Having spent the better portion of two hours interviewing for the position, I was confident that I was to get the job. Paddy's mother Jamie appreciated both the consistency of a teacher continuing to teach even past 3 o'clock as well as having a male presence in his life, as Paddy's only real influences up until this point had been herself and various elderly females.
My job, it would seem, would be simple: I was to teach Paddy how to take care of himself; to cook, to do laundry, to shop for groceries and talk to members of society. I was to prepare him for the inevitable outcome of moving away from mother. It was understood that there are certain things Paddy cannot do and will never do. He will never go to college, nor will he ever be completely able to sustain an independent existence. The hope however, with Paddy, as with all of the students connected to our program, is that they will form a modicum of independence and socialization. And so it went for months, Paddy and I would spend our weekday afternoons traveling throughout portions of Massachusetts doing various daily tasks. Paddys mother, a kind well-to-do educator in her own right, confessed that she was too much of a pushover with her own son and scarcely demanded he do anything for himself. In surprising moments of darkness, Jamie admitted that this tendency to baby him was born both from guilt and from ignorance. She felt it her fault Paddy was born disabled and he being her only son, she admitted to not knowing how to treat him once he was diagnosed. On more than one occasion she asked that I be the bad-guy in his life. She was all too aware that she, for whatever reason, did not have it in her to enforce that which she wanted so much for her son to have, upon him.
She simply could not be tough with him.
She simply could not be tough with him.
And although maintaining the esteem of a teacher even after the final school bell rang for the day proved extraordinarily difficult, it was expected of me. What manifested in that time was a seemingly bullying relationship with Paddy. I allowed myself to become familiar and friendly with Paddy without ever becoming friends. I always maintained a teacher-student relationship with Paddy, which was far from easy, as I would occasionally be in his home seeing him off to bed, if his mother had a particularly late night at the office. This distance was what allowed me to do my job.
Spending all this time with my autistic student illustrated an often unnoticed microcosm of our society; the kind non-cynical portion of it. Our nation will go to war over oil, we will berate our own government, we will find differences between cultures living within our very borders and hate one another for those differences, but most people will treat those with disabilities with kindness. At their very worst, strangers will passively ignore those with emotional or mental disabilities, which is more than we can say about many other aspects of our society. None of this struck me as exceptional until I began talking more and more with Paddy. To put it mildly, Paddy is not a conversationalist. He has various speech impediments and trouble focusing his thoughts, added to which, Fragile X lends itself greatly to repetition of things overheard (a characteristic found similarly in certain species of parrots). So persons with Fragile X often slip into a more comfortable (as they see it: acceptable) habit of repeating things they've overheard. Therefore, to carry on a conversation with Paddy takes both patience and insistence. What I've learned from him is that this kindness shown by the general population surrounding Paddy, although well-intentioned, seems to have done more damage to Paddy than one could imagine.
Spending all this time with my autistic student illustrated an often unnoticed microcosm of our society; the kind non-cynical portion of it. Our nation will go to war over oil, we will berate our own government, we will find differences between cultures living within our very borders and hate one another for those differences, but most people will treat those with disabilities with kindness. At their very worst, strangers will passively ignore those with emotional or mental disabilities, which is more than we can say about many other aspects of our society. None of this struck me as exceptional until I began talking more and more with Paddy. To put it mildly, Paddy is not a conversationalist. He has various speech impediments and trouble focusing his thoughts, added to which, Fragile X lends itself greatly to repetition of things overheard (a characteristic found similarly in certain species of parrots). So persons with Fragile X often slip into a more comfortable (as they see it: acceptable) habit of repeating things they've overheard. Therefore, to carry on a conversation with Paddy takes both patience and insistence. What I've learned from him is that this kindness shown by the general population surrounding Paddy, although well-intentioned, seems to have done more damage to Paddy than one could imagine.
Kindness from strangers usually manifests in able-bodied people doing things for our students so as not to burden our students with having to carry the tasks out themselves. The bulk of society sees a person with Down Syndrome or Aspergers as incapable and pity them for it.
What anyone working in the field of high or moderate-functioning disabilities will tell you is that they are far more clever and self-sufficient than they are given credit for. In talking with Paddy, it became clear that he greatly detested my having him expend any energy after school. If left to his own devices, he would (like any normal young adult) seclude himself in the basement of his mammoth home watching television until his mother calls him up for dinner. He would not, at the age of twenty, offer to help his mother cook the meal she prepared for him nor offer to help her clean up after him. To judge Paddy by normal 20-year-old standards, one would label him selfish, lazy and uncaring. Clearly, it isn't fair to compare Paddy to the average 20-year-old male, but I've also found it not to be completely foolhardy to do so either. In spending time with Paddy it became clear that he ceased cleaning his own dirty dishes, washing his own laundry and helping with daily chores and errands not because he was incapable, as the bulk of society believes, but because he was never challenged to do so.
His mother claimed he was unable to unlock doors with a key because of his underachieving fine motor skills, which I took to be true. Who would know better than his own mother what his capabilities are? Over time, I noticed, while in the classroom with Paddy, that he was carrying out several fine motor skilled tasks without anyone noticing. He could button his own jacket, play checkers, and file books in between one another on a bookshelf. It made me curious; I had taken the word of his mother, a self-labeled pushover, someone who had admitted a certain inability to challenge her own son. What was Paddy truly incapable of and what was he simply never challenged to do? Soon after I made it a point to have Paddy open the back door to his house using the key his mother had given me. His reaction was telling, he complained that he was not a maid and that he didn't have to do that. I had heard this reaction plenty of times before. Maids, according to Paddy, do the laundry for him, cook his dinners for him, pump gasoline into cars for him, buy his groceries for him, vacuum for him, pick up his medicine at the local drug store for him, clean his room for him; according to Paddy a maid does just about everything except watch television and listen to music for him.
A locked door was no different. It was maid's work.
A locked door was no different. It was maid's work.
Arriving at his backdoor, witnessing what was quickly becoming an abnormal temper-tantrum, several realizations were surfacing. The most prevalent being that his view of his own role in society is as much at fault for his social retardation as his autism is. The second thought was that, in a way, Paddy was correct. So far, in his first twenty years of gathered experiences, it was the maid's job to do everything for him. In his mind, he was being wronged. No one had ever challenged this person. For two decades, Paddy has lived amongst those who assume he cannot take care of himself and therefore do not bother to ask him to try. I suppose it was karma that Jamie hired a male who was not too far removed from being 20-years-old and therefore maintained tinges of lazy adolescence himself. Paddy's mother and his elderly caretakers before me, may not have a problem relegating themselves to hand servitude, but I was not about to do so for myself. Paddy could unlock that door and we would stand outside all afternoon until he proved it.
* * *
It is now the middle of spring and the doldrums of the harsh New England winter have receded. Winter in Massachusetts is for hiding and training. Our schools and houses and cars; cocoons of betterment shed only after the earth once again warms us.
Paddy has bettered himself. I've seen to this. I've seen the good people around us pity him and help him. I've watched soccer moms with handfuls of books hold the door open for Paddy despite him having nothing in his hands. I've taught him not only to say thank-you for such kindness but in the future, to reverse it by holding the door open himself for those same soccer moms. I've watched his employers pat him on the shoulder for a job well done only to redo his sloppy workmanship once he turns his back. I've taught those same employers to show Paddy the respect of being treated as an equal, to demand that he do the job they pay him to do, to do the job he is absolutely capable of doing. I've taught Paddy that he doesn't get a free pass at work anymore. I've become his parent, not by blood, but by responsibility. I've become the bad cop. The enforcer. And what very few people seem to grasp is that because of this, I have become his greatest ally.
I cannot imagine what pain and anguish Jamie must go through from day-to-day, what guilt she must feel or what frustration she has relegated to normalcy. I am not so smug as to berate her for the job she has done with her son, nor would I ever presume to be a better parent or a better influence than anyone else. People become lazy however. They flee toward their comfort zones and rarely deviate from them. They make mistakes born from fear and from hesitancy, not from dispassion. My only claim is that, in this instance, I have no comfort zones. There is nothing about Paddy that is comfortable to me. Added to which, I am being paid to be both fearless and non-hesitant. I am being paid to watch Paddy prepare his own dinner. I am being paid to teach Paddy to shop for his own groceries, clean his own room, open his own doors, and complete his own tasks.
I write to you now, not because we live in a world of heartlessness, but because we live in a world of wrongheaded thoughtfulness. The Paddys of the world can do infinitely more than you assume they can. If nothing else, the Paddys of the world are clever enough to know if they hesitate long enough, some kind soul will do their bidding for them. I ask that you give the Paddys of this world your care, your patience, your understanding, but not your elbow grease, not your sweat and not your muscle. I ask that if you assist the Paddys of the world at some point in your daily routine that you teach them how to fish instead of handing them something from your own catch basket.
And when you arrive at your own doorstep, wait for the Paddys of the world to unlock the door themselves, as I assure you, they will.
2006. All Rights Reserved.
* * *
It is now the middle of spring and the doldrums of the harsh New England winter have receded. Winter in Massachusetts is for hiding and training. Our schools and houses and cars; cocoons of betterment shed only after the earth once again warms us.
Paddy has bettered himself. I've seen to this. I've seen the good people around us pity him and help him. I've watched soccer moms with handfuls of books hold the door open for Paddy despite him having nothing in his hands. I've taught him not only to say thank-you for such kindness but in the future, to reverse it by holding the door open himself for those same soccer moms. I've watched his employers pat him on the shoulder for a job well done only to redo his sloppy workmanship once he turns his back. I've taught those same employers to show Paddy the respect of being treated as an equal, to demand that he do the job they pay him to do, to do the job he is absolutely capable of doing. I've taught Paddy that he doesn't get a free pass at work anymore. I've become his parent, not by blood, but by responsibility. I've become the bad cop. The enforcer. And what very few people seem to grasp is that because of this, I have become his greatest ally.
I cannot imagine what pain and anguish Jamie must go through from day-to-day, what guilt she must feel or what frustration she has relegated to normalcy. I am not so smug as to berate her for the job she has done with her son, nor would I ever presume to be a better parent or a better influence than anyone else. People become lazy however. They flee toward their comfort zones and rarely deviate from them. They make mistakes born from fear and from hesitancy, not from dispassion. My only claim is that, in this instance, I have no comfort zones. There is nothing about Paddy that is comfortable to me. Added to which, I am being paid to be both fearless and non-hesitant. I am being paid to watch Paddy prepare his own dinner. I am being paid to teach Paddy to shop for his own groceries, clean his own room, open his own doors, and complete his own tasks.
I write to you now, not because we live in a world of heartlessness, but because we live in a world of wrongheaded thoughtfulness. The Paddys of the world can do infinitely more than you assume they can. If nothing else, the Paddys of the world are clever enough to know if they hesitate long enough, some kind soul will do their bidding for them. I ask that you give the Paddys of this world your care, your patience, your understanding, but not your elbow grease, not your sweat and not your muscle. I ask that if you assist the Paddys of the world at some point in your daily routine that you teach them how to fish instead of handing them something from your own catch basket.
And when you arrive at your own doorstep, wait for the Paddys of the world to unlock the door themselves, as I assure you, they will.
2006. All Rights Reserved.
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