Joel has almost no concept of time. His time responses are simply physiological rather than dictated by any kind of external restraints. Yes he carries a watch and occasionally glances at it for some kind of general idea but he makes few if any decisions based on the passage of time. When we name a specific time for an event, he does consider it in his planning, but simply in the way that the event and time match each other. The passing of time leading to that designated event has no merit in his thinking. Time remains a mystery to Joel.
In some ways, however, there is joy in the emancipation of the passing of time. Imagine a world without clocks, without deadlines, without appointments, without specific time requirements. Imagine eating, sleeping, talking, going, doing things whenever you felt? What kind of strange and marvelous existence would it be to have no awareness of the clock, the watch, the timekeeper. What if you never dealt with your own impatience or the impatience of someone else. What if the task had no deadline and you could deal with it at your leisure? Would this make your life all about leisure and pleasure? This is the natural world of Joel.
Yet it is an artificial world and one that has no bearing on the "real" world in which we reside. While we could quibble about the human imposition of time on our lives, in truth it is a reality. We have to follow society's time schedule and so must Joel. Here is where the intersection of autism and reality clash without any kind of ideal resolution. Society's insistence on following a time schedule and Joel's natural predilection for not knowing that time is passing. It makes for an incongruent and nearly impossible situation.
As parents though, we do not give up and accept Joel's lack of time awareness. Doing so would make Joel even less contributing and without meaning in today's world. Instead, we constantly remind him of the passing of time, to study the clock, to reference the upcoming events, to mention how long something will take, to point out that we cannot forget or ignore the clock as it steadily moves.
And in some intangible way, Joel's lack of time concept is related to his general sluggishness, lack of preparation, and very little progressive thinking. His life responses then are rather random and undetermined by any outside force with little regard to the things that have to get done. Most people wake up and give thought to the passing of time and how the goals of the day need to be met. Joel does not think any of those things.
In the end, however, Joel is probably happier for not having constant time considerations. We are not happy with him in this regard in that he does not and cannot fit into our schedule, but he does find joy in the lack of constraints. Keep in mind, however, that Joel does not actively resist time, he simply has no consideration for it. Not out of rebellion but more out of awareness. He is blissfully content not to be aware of time, but we are continually wishing for him to know time and to live closer to the clock. It makes for constant frustration for us, but makes no difference to him!
Tuesday, November 30, 2010
Sunday, November 28, 2010
Let Him Have His Moment
In the day to day and often murky waters of parenting, one of the toughest decisions to make is when to let the child have his way, his moment, his victory. Parents worry that giving in too much sends a message of constant capitulation and ease of life's journey, an artificial world that will inevitably be a jarring of the senses for the maturing child. The other extreme, however, sets up an autocratic governance where a child often feels undervalued and not permitted any kind of freedom for victory or making of mistakes. In general, for most parents, I subscribe to the idea of saying yes when possible and allow children their moment within the confines of safety and security. Yet, I have often reminded my children particularly in their younger years that our family is not a democracy and that parents get to make the decisions apart from any kind of voting privilege children think they have!
It comes back so often to balance of parenting--freedom vs. restriction. Usually the best course is somewhere in the middle, generously spiced and adorned with lots of love. One day they will be on their own, and they need to know how to make the right decision but to understand that the love of parents is always the overriding criterion for decisions. So parents worry that saying no too often will result in rebelliousness or saying yes too often will result a loss of authority. And we walk on the tightrope of parenting, hoping for the insights that will be best for the child, but never sacrificing safety and security along the way.
Now to the autistic child. All is different. The parenting skills are not the same. The philosophy is not the same and the thought processing is not the same. Raising an autistic child is markedly different from a normal child and the goals are unique. Do not try to assume you can be the same parent for a normal child as you are for the autistic child. The rules have changed.
To all those who are often judgmental of the so-called "bad" parents in the world, could it be you are observing a child with autism? A child who does not live in the same world as everyone else? Perhaps a parent who is struggling to make the puzzle pieces fit for the child? It reminds me of the old adage, "Before you criticize someone, walk a mile in his shoes."
But parenting an autistic child is not an excuse for mediocre parenting. It is, instead, an opportunity to help a disabled child be safe, cope, learn, to be successful, to see the world in its totality, and find joy in the midst of the challenges, and yes, for the parent to feel successful as well. Too often we forget the depth of emotional distress that the parent experiences. For a parent to feel productive, loving, successful, he or she must experience some kind of affirmation for his or her efforts. While these affirming times are often intermittent, they can be quite euphoric.
But unlike a normal child, the autistic child is not necessarily being trained for independence, for that unaided flight to the world. Instead the autistic child is simply finding his niche, a way for him to fit into the world, likely with lots of help. Rather than worrying that "giving in" will somehow corrupt him forever, not allowing him to recognize authority or ill-preparing him for the challenges of the world, perhaps parents need to find those opportunities to allow for some degree of contentment. Give him his moment, for there are not very many of those.
Just like raising a normal child, parents must seek a balance between exerting authority and allow for some degree of independence. But unlike a normal child, the battle is not for quelling rebelliousness. The battle is for making the puzzle pieces fit. In the end, safety and security are the goals and raising a child is written on a tablet made of lots of love.
It comes back so often to balance of parenting--freedom vs. restriction. Usually the best course is somewhere in the middle, generously spiced and adorned with lots of love. One day they will be on their own, and they need to know how to make the right decision but to understand that the love of parents is always the overriding criterion for decisions. So parents worry that saying no too often will result in rebelliousness or saying yes too often will result a loss of authority. And we walk on the tightrope of parenting, hoping for the insights that will be best for the child, but never sacrificing safety and security along the way.
Now to the autistic child. All is different. The parenting skills are not the same. The philosophy is not the same and the thought processing is not the same. Raising an autistic child is markedly different from a normal child and the goals are unique. Do not try to assume you can be the same parent for a normal child as you are for the autistic child. The rules have changed.
To all those who are often judgmental of the so-called "bad" parents in the world, could it be you are observing a child with autism? A child who does not live in the same world as everyone else? Perhaps a parent who is struggling to make the puzzle pieces fit for the child? It reminds me of the old adage, "Before you criticize someone, walk a mile in his shoes."
But parenting an autistic child is not an excuse for mediocre parenting. It is, instead, an opportunity to help a disabled child be safe, cope, learn, to be successful, to see the world in its totality, and find joy in the midst of the challenges, and yes, for the parent to feel successful as well. Too often we forget the depth of emotional distress that the parent experiences. For a parent to feel productive, loving, successful, he or she must experience some kind of affirmation for his or her efforts. While these affirming times are often intermittent, they can be quite euphoric.
But unlike a normal child, the autistic child is not necessarily being trained for independence, for that unaided flight to the world. Instead the autistic child is simply finding his niche, a way for him to fit into the world, likely with lots of help. Rather than worrying that "giving in" will somehow corrupt him forever, not allowing him to recognize authority or ill-preparing him for the challenges of the world, perhaps parents need to find those opportunities to allow for some degree of contentment. Give him his moment, for there are not very many of those.
Just like raising a normal child, parents must seek a balance between exerting authority and allow for some degree of independence. But unlike a normal child, the battle is not for quelling rebelliousness. The battle is for making the puzzle pieces fit. In the end, safety and security are the goals and raising a child is written on a tablet made of lots of love.
Thursday, November 25, 2010
A Moment of Thanks
Reading through the various accounts of the First Thanksgiving, I have to wonder again why we celebrate eating and food on this day. The pilgrims often had meals together and gave thanks for their blessings, driven strongly by their piety, hardships, and work ethic. The friendly Indians helped out to an extent so we like to think of the event as an ecumenical moment where we set aside differences and unify ourselves around the commonality of food. It makes for a touching moment with family that's for sure.
But why don't we celebrate the first log cabin? Or the first song? Or the first book? Or the first grandchild? Or the first fur cap or gloves? Why did we single out the meal as our Thanksgiving pinnacle? Why not the heater or air conditioner or rifle or flannel pajamas? There are so many events that we could have selected for Thanksgiving. The piano, the television, the cell phone, the clock, the porch swing, the dog and cat, the scarf, the shower, the bar of soap? Regardless, I am happy to celebrate the meal and to have a reason for a gathering of the family.
And I certainly celebrate the gathering of the Tucker family! There are 13 of us in Brownwood today and it is exciting to see the generations all in one locale. We are a strong, intelligent, creative bunch with doses of cynicism, sarcasm, wit, joy, lots of music, and spark. The spark is intensified by the proliferation of technological toys. We have them, use them, love them, and share ideas with them. Sitting near my fascinating brother, we carried on a conversation while looking at blogs, websites, emails, and texting others. It was a postmodern moment. Some might say it demonstrates the avoidance of interpersonal relationship building. But most who live in that world actually declare the opposite. Technology with its vast array of social networking availability has created a new level of interpersonal relationships undaunted by time or space.
Back to the family gathering around the table. I give thanks today for my family, for the many blessings of our lives, and for the technology that allows me to stay in touch with everyone at a moment's notice. Rather than resist the wireless world, let us embrace it and allow it to enhance our love for each other. Meanwhile, nearly time for turkey, cranberry sauce, dressing, rolls, tea, and lots of dessert. Excuse my Epicureanism but I think I'll treat myself well today. In truth my real treat comes from having my family around me.
But why don't we celebrate the first log cabin? Or the first song? Or the first book? Or the first grandchild? Or the first fur cap or gloves? Why did we single out the meal as our Thanksgiving pinnacle? Why not the heater or air conditioner or rifle or flannel pajamas? There are so many events that we could have selected for Thanksgiving. The piano, the television, the cell phone, the clock, the porch swing, the dog and cat, the scarf, the shower, the bar of soap? Regardless, I am happy to celebrate the meal and to have a reason for a gathering of the family.
And I certainly celebrate the gathering of the Tucker family! There are 13 of us in Brownwood today and it is exciting to see the generations all in one locale. We are a strong, intelligent, creative bunch with doses of cynicism, sarcasm, wit, joy, lots of music, and spark. The spark is intensified by the proliferation of technological toys. We have them, use them, love them, and share ideas with them. Sitting near my fascinating brother, we carried on a conversation while looking at blogs, websites, emails, and texting others. It was a postmodern moment. Some might say it demonstrates the avoidance of interpersonal relationship building. But most who live in that world actually declare the opposite. Technology with its vast array of social networking availability has created a new level of interpersonal relationships undaunted by time or space.
Back to the family gathering around the table. I give thanks today for my family, for the many blessings of our lives, and for the technology that allows me to stay in touch with everyone at a moment's notice. Rather than resist the wireless world, let us embrace it and allow it to enhance our love for each other. Meanwhile, nearly time for turkey, cranberry sauce, dressing, rolls, tea, and lots of dessert. Excuse my Epicureanism but I think I'll treat myself well today. In truth my real treat comes from having my family around me.
Wednesday, November 24, 2010
Observations on Boston
Attending a three-day conference in Boston, I had the opportunity to walk the streets, ride the "T", eat the food, and live the Boston life albeit very briefly. It was a good adventure and one I wish to replicate. This little post is not so much for the Bostonian as for those who are curious about the world.
Hearing an estimate that there are approximately 80 universities in Boston, I quickly noticed a "collegiate" atmosphere. It seemed as though college students of all ages abounded. Most people walking had a satchel or a backpack and it was common to see people reading on a bench. In the subway, approximately 1 of 3 or 4 people had a book. Most of the books were college textbooks although the occasional Baldacci novel would be seen rather surreptitiously. At any given time, there are well over 250,000 college students in a city proper of less than 700,000 people. Readers and learners and potential academicians seemed to seep through virtually every part of the city, finding residence in Cambridge and Harvard square.
It is rare that my walking pace is matched where I live. I tend to walk briskly with decided goals and a deliberate step that long legs seem to enjoy. Yet in Boston, my pace was matched or exceeded by most people. A further look and I realized that I saw very little obesity. Of course this could be due to the larger people being in automobiles or staying home, but in general I wonder if the crowded city (yes, everything was close together), led to emphasizing walking over riding. If so, then space and wide-open regions are ironically contributing to the wellness problems of our country! (okay, way out theory and certainly pocked full of gaping holes).
Another weak theory: friendly people are generally larger people. My attempts to have a conversation on the subway were met with confusion and suspicion until I became as silent as the others. Texans do tend to strike up friendly conversations with strangers. Bostonians are more reserved (maybe they are thinking great academic thoughts as opposed to Texans!).
While I saw the usual fast food, burger places, sandwich shops, there did appear to be more fish restaurants than I expected. It is hard (nearly impossible) to find fresh fish in central Texas for obvious reasons, so I indulged in the amazing fish delicacies found in virtually every restaurant. And what a treat--swordfish, salmon, sushi, mahi mahi, etc. graced my lips at every opportunity.
Bookstores: a disappointment in some ways. I went to four used bookstores and three new ones. The new ones had the usual assortment of bestsellers organized in the typical ways, with some emphases on literature and political books. The used bookstores were small and specialized. One only dealt with paperbacks while another only had history and politics. My favorite one specialized in documents and art books. The used fiction section was small and concentrated primarily on the finer authors of our times. I did pick up a couple of TR books (I collect biographies and related books on Theodore Roosevelt) and coveted a few other things, but elected not to buy since I might exceed the luggage weight limit. Overall though, Archer City, Texas reigns as the finest used bookstore I have experienced and nothing in Boston can compare.
Materialism: still rampant as it is everywhere with glamorous, glossy malls and high sticker items. Slowly becoming much less materialistic, I found little joy in perusing the expensive items. Happy they exist and that many enjoy them, I walked by them with scarcely a glance.
Enjoying a good cup of coffee everywhere I went, I have about decided that coffee is the elixir of cheer in our country. Tending toward contrarianism, I must admit to being like everyone else with regard to coffee. Great stuff and Boston had its share of great coffee.
It was a fun time and I am glad for the experience. But being mildly claustrophobic, I was glad for the return to my native land called Texas with its expansive sky, cattle, friendly people, and lots of space.
Hearing an estimate that there are approximately 80 universities in Boston, I quickly noticed a "collegiate" atmosphere. It seemed as though college students of all ages abounded. Most people walking had a satchel or a backpack and it was common to see people reading on a bench. In the subway, approximately 1 of 3 or 4 people had a book. Most of the books were college textbooks although the occasional Baldacci novel would be seen rather surreptitiously. At any given time, there are well over 250,000 college students in a city proper of less than 700,000 people. Readers and learners and potential academicians seemed to seep through virtually every part of the city, finding residence in Cambridge and Harvard square.
It is rare that my walking pace is matched where I live. I tend to walk briskly with decided goals and a deliberate step that long legs seem to enjoy. Yet in Boston, my pace was matched or exceeded by most people. A further look and I realized that I saw very little obesity. Of course this could be due to the larger people being in automobiles or staying home, but in general I wonder if the crowded city (yes, everything was close together), led to emphasizing walking over riding. If so, then space and wide-open regions are ironically contributing to the wellness problems of our country! (okay, way out theory and certainly pocked full of gaping holes).
Another weak theory: friendly people are generally larger people. My attempts to have a conversation on the subway were met with confusion and suspicion until I became as silent as the others. Texans do tend to strike up friendly conversations with strangers. Bostonians are more reserved (maybe they are thinking great academic thoughts as opposed to Texans!).
While I saw the usual fast food, burger places, sandwich shops, there did appear to be more fish restaurants than I expected. It is hard (nearly impossible) to find fresh fish in central Texas for obvious reasons, so I indulged in the amazing fish delicacies found in virtually every restaurant. And what a treat--swordfish, salmon, sushi, mahi mahi, etc. graced my lips at every opportunity.
Bookstores: a disappointment in some ways. I went to four used bookstores and three new ones. The new ones had the usual assortment of bestsellers organized in the typical ways, with some emphases on literature and political books. The used bookstores were small and specialized. One only dealt with paperbacks while another only had history and politics. My favorite one specialized in documents and art books. The used fiction section was small and concentrated primarily on the finer authors of our times. I did pick up a couple of TR books (I collect biographies and related books on Theodore Roosevelt) and coveted a few other things, but elected not to buy since I might exceed the luggage weight limit. Overall though, Archer City, Texas reigns as the finest used bookstore I have experienced and nothing in Boston can compare.
Materialism: still rampant as it is everywhere with glamorous, glossy malls and high sticker items. Slowly becoming much less materialistic, I found little joy in perusing the expensive items. Happy they exist and that many enjoy them, I walked by them with scarcely a glance.
Enjoying a good cup of coffee everywhere I went, I have about decided that coffee is the elixir of cheer in our country. Tending toward contrarianism, I must admit to being like everyone else with regard to coffee. Great stuff and Boston had its share of great coffee.
It was a fun time and I am glad for the experience. But being mildly claustrophobic, I was glad for the return to my native land called Texas with its expansive sky, cattle, friendly people, and lots of space.
Wednesday, November 17, 2010
What do we do?
Historically, parents would usually give children with learning problems to an institution, and referencing hundreds of years, those children would be placed in some kind of asylum where they would usually get worse. In other words, parents and society would collectively give up on the children, relegating them to unfilled life and an early death.
We hear discussion about quality of life, about contributing citizens, and the role of education and helping people become productive in the world. We have great respect for those figures who through grit, fortitude, and intelligence accomplish amazing feats and become icons of the American dream. We peruse headlines and smile when we read about a sports figure or an actor or a model or a popular musician. We hold these people high in esteem. But we also regard with deserved admiration the brain surgeon, the lawyer, the politician, the general, and the successful businessman, all of whom contribute brilliance and skills to the betterment of society.
My other two children are of this ilk. One is on the pathway to becoming a sports psychologist. He is strong, smart, driven to excellence and will not allow himself to fail at what he does. The other son is creative, gifted, bright with a broad sense of the musical world, a world he is ready to enter and to conquer.
But what about those children and those adults who do not have the ability to become a famous actor, lawyer, doctor, teacher, or athlete? Do they have a role in society? Do they deserve a chance to live, to progress, to fulfill their potential? Does the government have a responsibility to help these people? Where does the family fit in with this obligation? Should we practice some kind of Teutonic eugenics that is an extension of Darwinism and let these people strike out on their own? Would the inevitable failure teach them how to then succeed? Or would the inevitable failure result in more homeless people dying in the streets?
Whether you consider yourself a compassionate humanitarian or not, can anyone with a heart honestly embrace the principal of the survival of the fittest and sit back allowing those with special needs to suffer? Should we as contributing citizens of the world shrug our shoulders and let these special needs people enter the world only to live in sorrow and confusion? The bird with the broken wing will likely perish due to a lack of ability to sustain itself. Maybe a few will figure out how to live but most will not. This is the way of the world. Let things happen the way they happen. Correct?
But let’s look at this another way. Through no fault of their own, autistics are born into a world that in many ways remains a mystery to them throughout their lives. They have a right to live in this world and a right to make their own way. Those without special needs (although I could argue that everyone has special needs) often feel they have a moral obligation to help the challenged adjust to the complex world.
It seems to me that we have one of two choices with these people: 1) destroy them or 2) help them cope. Since choice number one is not a choice in the Tucker family, we have elected to help our son Joel cope in a difficult world that does not and cannot fully understand his disabilities. Some may call this family love, others moral obligation, but whatever it is called it is the unswerving, relentless quest to help our son and to provide for his safety, comfort, and security.
We hear discussion about quality of life, about contributing citizens, and the role of education and helping people become productive in the world. We have great respect for those figures who through grit, fortitude, and intelligence accomplish amazing feats and become icons of the American dream. We peruse headlines and smile when we read about a sports figure or an actor or a model or a popular musician. We hold these people high in esteem. But we also regard with deserved admiration the brain surgeon, the lawyer, the politician, the general, and the successful businessman, all of whom contribute brilliance and skills to the betterment of society.
My other two children are of this ilk. One is on the pathway to becoming a sports psychologist. He is strong, smart, driven to excellence and will not allow himself to fail at what he does. The other son is creative, gifted, bright with a broad sense of the musical world, a world he is ready to enter and to conquer.
But what about those children and those adults who do not have the ability to become a famous actor, lawyer, doctor, teacher, or athlete? Do they have a role in society? Do they deserve a chance to live, to progress, to fulfill their potential? Does the government have a responsibility to help these people? Where does the family fit in with this obligation? Should we practice some kind of Teutonic eugenics that is an extension of Darwinism and let these people strike out on their own? Would the inevitable failure teach them how to then succeed? Or would the inevitable failure result in more homeless people dying in the streets?
Whether you consider yourself a compassionate humanitarian or not, can anyone with a heart honestly embrace the principal of the survival of the fittest and sit back allowing those with special needs to suffer? Should we as contributing citizens of the world shrug our shoulders and let these special needs people enter the world only to live in sorrow and confusion? The bird with the broken wing will likely perish due to a lack of ability to sustain itself. Maybe a few will figure out how to live but most will not. This is the way of the world. Let things happen the way they happen. Correct?
But let’s look at this another way. Through no fault of their own, autistics are born into a world that in many ways remains a mystery to them throughout their lives. They have a right to live in this world and a right to make their own way. Those without special needs (although I could argue that everyone has special needs) often feel they have a moral obligation to help the challenged adjust to the complex world.
It seems to me that we have one of two choices with these people: 1) destroy them or 2) help them cope. Since choice number one is not a choice in the Tucker family, we have elected to help our son Joel cope in a difficult world that does not and cannot fully understand his disabilities. Some may call this family love, others moral obligation, but whatever it is called it is the unswerving, relentless quest to help our son and to provide for his safety, comfort, and security.
Tuesday, November 16, 2010
Management/Supervision
As an Amazon book reviewer, I often receive requests from authors to review their books. I am willing to do so provided I am fairly caught up on my reading. Leaning on fiction with an occasional foray into history, it is unusual for me to read self-improvement books or books on management. Yet, about once or twice a year I like to keep up with the industry, not to mention the gain of new leadership ideas.
All this to say I recently read a book on management that I found very effective and gave me ideas to codify my own leadership style. Since this is a work in progress and I expect the list to change from experience, please do not forever hold me steadfast to this list. The chess game in my head is constantly reevaluating the next move, hoping to anticipate the response. Meanwhile, here we go: Rob's ten point management style. These are in no particular order (or rather the order changes depending on the situation).
1. Don't overreact to a problem or a criticism of anyone or anything
2. Listen thoughtfully and considerately to everyone
3. Be honest with people
4. Always expect a response to any decision made. Be prepared for the response you don't want, be happy when it is the response you do want.
5. Cast a broad, lofty vision for the program
6. Praise generously, criticize judiciously
7. Find ways to make others successful
8. Smile often and use humor often without insults or sarcasm
9. Walk around and stay personally in touch with others
10. Learn from mistakes and don't take it personally.
All this to say I recently read a book on management that I found very effective and gave me ideas to codify my own leadership style. Since this is a work in progress and I expect the list to change from experience, please do not forever hold me steadfast to this list. The chess game in my head is constantly reevaluating the next move, hoping to anticipate the response. Meanwhile, here we go: Rob's ten point management style. These are in no particular order (or rather the order changes depending on the situation).
1. Don't overreact to a problem or a criticism of anyone or anything
2. Listen thoughtfully and considerately to everyone
3. Be honest with people
4. Always expect a response to any decision made. Be prepared for the response you don't want, be happy when it is the response you do want.
5. Cast a broad, lofty vision for the program
6. Praise generously, criticize judiciously
7. Find ways to make others successful
8. Smile often and use humor often without insults or sarcasm
9. Walk around and stay personally in touch with others
10. Learn from mistakes and don't take it personally.
Friday, November 12, 2010
Childhood to Adulthood--The Saga Continues
Chronicling the life of our autistic son Joel from his childhood to adulthood, he turns 21 in December 2010, brings to mind the constant concern, constant joy, and emotional roller-coaster that a special needs child causes in a family. In the course of living our lives, we often encounter dramatic events that require our emotional reaction. Events such as loss, or birthdays, or tender moments, or thrilling times, or adventures, or an infinite amount of audacious and stunning things that happen to human beings. All these and more elicit great emotional responses from us. But once they are done, while vestiges of the experience remain, in general the emotion reposes, returning to a calm ride on the sea.
Yet having a special needs child causes an entirely different set of emotions in a parent. Good parents love, protect, and worry about their children all their lives. It is almost a mandated condition of parenting (and grandparenting I hear), to spend a great deal of time being concerned about your children. For us the same is true. We love our children and each one is special, deserving our devoted love and attention forever. The difference is that the dramatic events that elicit great emotional responses, turn away and go into repose. Parenting a child without disabilities provides the human emotions opportunities to relax, to calm themselves, and to experience still waters after the turbulence.
Parenting a disabled child, however, can be likened to being on rough waters that will not change, will not become still, and will always threaten to overwhelm the boat. Furthermore, the boat remains on the water and will never land. Turbulence becomes a way of life on the open water and any calm is relished but somehow anomalous in a quaking quagmire of constant contention. But wait, if all that is true and more, where is the pleasure, the joy, the blessings?
I recall as a teenager, hiking through the Franklin Mountains searching for and finding Prickly Pear Cactus. Carefully, but thoroughly, we would gather the little pears, cutting out the tiny needles and collect them for jelly. It was pain-staking work due to the fear of needles getting stuck in fingers or even in tongues, but the joy of the taste of the jelly was worth the effort. So it goes with raising a disabled child.
Unlike dramatic events that dispel, leaving behind vestiges of concern, but ending in positive, raising a disabled child has no end. It requires an infinite amount of tenacity and patience. It is ubiquitous and difficult. Not for the faint of heart, a parent must apply due diligence to virtually everything from hygiene to health to safety education to behavior. Somewhere in the transference of child to adult, the parent must find ways to make the child socially presentable, contribute something to society, and fit into the world.
I do believe that a parent of such a child must take some time for self-examination, for to learn oneself is to be able to "learn" about others. A moment of selfishness or self reflection can make one aware of a lifetime of selflessness. And selflessness is absolutely necessary for raising a disabled child to adulthood.
But like the prickly pear, the rewards are wonderful and like the song says, "Love Changes Everything." To love your child is to do everything possible to help him or her regardless of the challenges in front. In some cases, love can take the form of institutional help or medical intervention but in most cases, love is the ruling factor in all decisions for nobody knows your child the way you do.
Yet having a special needs child causes an entirely different set of emotions in a parent. Good parents love, protect, and worry about their children all their lives. It is almost a mandated condition of parenting (and grandparenting I hear), to spend a great deal of time being concerned about your children. For us the same is true. We love our children and each one is special, deserving our devoted love and attention forever. The difference is that the dramatic events that elicit great emotional responses, turn away and go into repose. Parenting a child without disabilities provides the human emotions opportunities to relax, to calm themselves, and to experience still waters after the turbulence.
Parenting a disabled child, however, can be likened to being on rough waters that will not change, will not become still, and will always threaten to overwhelm the boat. Furthermore, the boat remains on the water and will never land. Turbulence becomes a way of life on the open water and any calm is relished but somehow anomalous in a quaking quagmire of constant contention. But wait, if all that is true and more, where is the pleasure, the joy, the blessings?
I recall as a teenager, hiking through the Franklin Mountains searching for and finding Prickly Pear Cactus. Carefully, but thoroughly, we would gather the little pears, cutting out the tiny needles and collect them for jelly. It was pain-staking work due to the fear of needles getting stuck in fingers or even in tongues, but the joy of the taste of the jelly was worth the effort. So it goes with raising a disabled child.
Unlike dramatic events that dispel, leaving behind vestiges of concern, but ending in positive, raising a disabled child has no end. It requires an infinite amount of tenacity and patience. It is ubiquitous and difficult. Not for the faint of heart, a parent must apply due diligence to virtually everything from hygiene to health to safety education to behavior. Somewhere in the transference of child to adult, the parent must find ways to make the child socially presentable, contribute something to society, and fit into the world.
I do believe that a parent of such a child must take some time for self-examination, for to learn oneself is to be able to "learn" about others. A moment of selfishness or self reflection can make one aware of a lifetime of selflessness. And selflessness is absolutely necessary for raising a disabled child to adulthood.
But like the prickly pear, the rewards are wonderful and like the song says, "Love Changes Everything." To love your child is to do everything possible to help him or her regardless of the challenges in front. In some cases, love can take the form of institutional help or medical intervention but in most cases, love is the ruling factor in all decisions for nobody knows your child the way you do.
Monday, November 08, 2010
Acceptance as Parents
If you are a parent of a child with special needs, one of the first things you need to do is to accept your role as a guardian, protector, guiding light, and responsible entity of your child. Many parents expend great emotional energy trying to determine their own role as parents of a special needs child. The first thing to establish is that you are the primary responsible person and will be as long as you live. This is not a choice, it is an obligation. It may be a burden or it might be a blessing (or likely a mixture of both with emphases on blessing), but it is the requirement for being the parent. Once you accept this as your duty, it makes other decisions much easier. You may not and should not abdicate your responsibility for the ultimate happiness of your child.
Knowing this, however, does not necessarily mean that you are the sole care-giver throughout the rest of the child's life, but it does mean that you are overseer of the child and you are the guardian. Your prime directive is to provide a safe, secure learning environment that allows your child comfort, happiness, and a purpose. In most cases, this is the home where the parents reside, but in some cases this is a special needs residence.
Finding the right kind of special needs home requires careful research, on site evaluation, and money for the residence. Mostly it requires the the person and the guardians be entirely comfortable with the setting. More on this later.
Meanwhile, it seems to me that parents expend great time and energy both denying their child's situation and being afraid to accept any kind of responsibility for the child. In many ways this is understandable due to the sheer amount of resources available to help and the amount of teachers involved in your child's education. The state (and this is true for most states) goes to great lengths to help ease the educational process and protect the child from failure in the classroom. Over a period of several years, it is easy for the parent to become somewhat complacent and even dependent upon the educational process to solve all the problems and turn out a product that is capable of contributing to society.
Unfortunately, while schools can help and all efforts are certainly worth it, in the end the child still has limitations. The parent who denies the realities of the child's abilities or lack thereof is possibly a parent not providing for the welfare of the child and for the future. There is nothing to gain and much to lose by not being able to recognize the limitations of special needs children. Know that recognizing limitations does not mean using those challenges as excuses for mediocrity. Invoking high expectations on your child is the only way to promote the idea that there is a niche for all kinds of people.
But until the parent accepts the child as a special needs child with disabilities, the child is actually endangered by a world that is not designed for those with problems. So in spite of the constant demands on the parents, it is an absolute mandate to provide a safe, secure, comfortable world for your child, a world that allows him to reach his potential.
Knowing this, however, does not necessarily mean that you are the sole care-giver throughout the rest of the child's life, but it does mean that you are overseer of the child and you are the guardian. Your prime directive is to provide a safe, secure learning environment that allows your child comfort, happiness, and a purpose. In most cases, this is the home where the parents reside, but in some cases this is a special needs residence.
Finding the right kind of special needs home requires careful research, on site evaluation, and money for the residence. Mostly it requires the the person and the guardians be entirely comfortable with the setting. More on this later.
Meanwhile, it seems to me that parents expend great time and energy both denying their child's situation and being afraid to accept any kind of responsibility for the child. In many ways this is understandable due to the sheer amount of resources available to help and the amount of teachers involved in your child's education. The state (and this is true for most states) goes to great lengths to help ease the educational process and protect the child from failure in the classroom. Over a period of several years, it is easy for the parent to become somewhat complacent and even dependent upon the educational process to solve all the problems and turn out a product that is capable of contributing to society.
Unfortunately, while schools can help and all efforts are certainly worth it, in the end the child still has limitations. The parent who denies the realities of the child's abilities or lack thereof is possibly a parent not providing for the welfare of the child and for the future. There is nothing to gain and much to lose by not being able to recognize the limitations of special needs children. Know that recognizing limitations does not mean using those challenges as excuses for mediocrity. Invoking high expectations on your child is the only way to promote the idea that there is a niche for all kinds of people.
But until the parent accepts the child as a special needs child with disabilities, the child is actually endangered by a world that is not designed for those with problems. So in spite of the constant demands on the parents, it is an absolute mandate to provide a safe, secure, comfortable world for your child, a world that allows him to reach his potential.
Tuesday, November 02, 2010
High Expectations and Respecting Reality
One of the hardest things about parenting an autistic child is to keep high expectations as part of the behavioral standard while recognizing the reality and the limitations. Unfortunately there is no magic formula or secret recipe for this kind of balance. It is a process of constantly keeping the ideal in mind but also remaining aware of the reality of what it means to be autistic.
An autistic child has limitations. Many of them. Their world is not like ours and they simply cannot do the things other people can do. Life moves too quickly for them and often appears random without the required order. There are usually abundances of stimulation, noise, complexity, color, and confusions surrounding our lives and an autistic tends to shut down amidst the chaos. In addition, the lack of physical coordination contributes to a sluggish and awkward existence, making crossing streets, reaching for things, writing, and general mobility rather difficult. Usually not being able to drive and almost not able to navigate public transportation, they are reliant on help to accomplish any task not readily accessible. Computers are potentially liberating in many ways, but for an autistic a computer is simply another machine full of complex problems and over stimulation.
More limitations are caused by a lack of curiosity, little imagination, few dreams, and the inability to use creativity in solving problems. All these and more are debilitating realities of the life of an autistic. Ironically and comfortably at least to an extent, they do not always recognize their own limits, and instead learn how to cope and how to exist successfully within the small frame of ability.
But as I told Joel Tucker, our 20 year old autistic son, he may not use his disabilities as an excuse for mediocrity or poor behavior. To this end, we have invoked a series of high expectations and goals for our son and constantly encourage him to reach for these things. Some are rather trivial in some ways, involving hygiene, life skills, and coping techniques, while others are substantial and complicated. Each day we remind him of his goals and each day we present several high expectations to him. Obviously if the goals are unattainable, we risk disappointment, depression, and stress. On the other side, if the goals are too simple, then he has nothing for which to strive.
This all creates a healthy balance of respecting the reality of the situation without letting go of the ideal. It is called parenting a disabled child and we have done so for 20 years to some degree of both success and failure. We often ask ourselves, "What can he accomplish?" Or "What is the best thing for Joel?" These questions and more govern our actions as guardians and dictate our goals for him. Without being imperialistic, however, we also encourage Joel to set his own goals and reach for the highest in all things. This is particularly important as the adult years set in.
Joel's own goals are usually immediate and involve some sort of gratification of the senses. His lack of a concept of time prevents him from forecasting or projecting the future. This means that we encourage him to develop his short term goals, but we guide him toward the longer term, always remaining committed to the balance of high expectations and recognition of reality.
As I write this little piece, I am reminded that though the limitations are different and though the dreams may be framed by his autism, the process for helping Joel is not dissimilar to helping anyone including ourselves. We should dream big and relentlessly pursue the ideal, but also be shaped by our current reality. It all makes for a wonderfully complex culture and one that is guaranteed to keep us hopping!
An autistic child has limitations. Many of them. Their world is not like ours and they simply cannot do the things other people can do. Life moves too quickly for them and often appears random without the required order. There are usually abundances of stimulation, noise, complexity, color, and confusions surrounding our lives and an autistic tends to shut down amidst the chaos. In addition, the lack of physical coordination contributes to a sluggish and awkward existence, making crossing streets, reaching for things, writing, and general mobility rather difficult. Usually not being able to drive and almost not able to navigate public transportation, they are reliant on help to accomplish any task not readily accessible. Computers are potentially liberating in many ways, but for an autistic a computer is simply another machine full of complex problems and over stimulation.
More limitations are caused by a lack of curiosity, little imagination, few dreams, and the inability to use creativity in solving problems. All these and more are debilitating realities of the life of an autistic. Ironically and comfortably at least to an extent, they do not always recognize their own limits, and instead learn how to cope and how to exist successfully within the small frame of ability.
But as I told Joel Tucker, our 20 year old autistic son, he may not use his disabilities as an excuse for mediocrity or poor behavior. To this end, we have invoked a series of high expectations and goals for our son and constantly encourage him to reach for these things. Some are rather trivial in some ways, involving hygiene, life skills, and coping techniques, while others are substantial and complicated. Each day we remind him of his goals and each day we present several high expectations to him. Obviously if the goals are unattainable, we risk disappointment, depression, and stress. On the other side, if the goals are too simple, then he has nothing for which to strive.
This all creates a healthy balance of respecting the reality of the situation without letting go of the ideal. It is called parenting a disabled child and we have done so for 20 years to some degree of both success and failure. We often ask ourselves, "What can he accomplish?" Or "What is the best thing for Joel?" These questions and more govern our actions as guardians and dictate our goals for him. Without being imperialistic, however, we also encourage Joel to set his own goals and reach for the highest in all things. This is particularly important as the adult years set in.
Joel's own goals are usually immediate and involve some sort of gratification of the senses. His lack of a concept of time prevents him from forecasting or projecting the future. This means that we encourage him to develop his short term goals, but we guide him toward the longer term, always remaining committed to the balance of high expectations and recognition of reality.
As I write this little piece, I am reminded that though the limitations are different and though the dreams may be framed by his autism, the process for helping Joel is not dissimilar to helping anyone including ourselves. We should dream big and relentlessly pursue the ideal, but also be shaped by our current reality. It all makes for a wonderfully complex culture and one that is guaranteed to keep us hopping!
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