This book details the process of rearing our son Joel, autistic since birth. It contains many practical suggestions for parents, teachers, and community leaders for how to deal with children and adults diagnosed as autistic. The philosophies and suggestions contained in these pages are based on the trials, joys, successes, and failures along the pathway of parenting. While the lens is through the eyes of a parent, much of the information is applicable to educators, employers, and people whose lives intersect with autism in some way.
Like A Crown
Adventures in AutismBy Robert L. TuckerAuthorHouse
Copyright © 2012 Robert L. Tucker
All right reserved.ISBN: 978-1-4772-2913-2Contents
Introduction......................................................................1One He is Autistic...............................................................5Two Playing The Cards You Have Been Dealt........................................15Three The Wreck..................................................................17Four Character Trait: Lack of Prejudice..........................................19Five The Missing Boy.............................................................23Six Finding His Potential........................................................25Seven Hope and Acceptance........................................................29Eight Medication Mistakes........................................................31Nine Literal expressions.........................................................35Ten ABECEDARIAN—It's About the Order.......................................41Eleven Cures for Autism..........................................................45Twelve The Siblings..............................................................51Thirteen Mysteries of Lying and Cheating.........................................53Fourteen Following the Rules.....................................................59Fifteen Amaranthine Angels.......................................................63Sixteen Fear: An Unknown Emotion.................................................67Seventeen Going to Camp—Ringing the Bell...................................69Eighteen Creativity and Music....................................................73Nineteen Give Him His Moment.....................................................81Twenty The Value of Life.........................................................85Twenty-One Lack of Reality.......................................................89Twenty-Two The Economics of Education............................................93Twenty-Three The Cell Phone......................................................97Twenty-Four Autism and Homework..................................................103Twenty-Five Deciphering the Social Contract......................................107Twenty-Six Black and White.......................................................113Twenty-Seven Eradication of the Cherry...........................................115Twenty-Eight Texting vs Speaking.................................................117Twenty-Nine Time: A Constant Mystery.............................................119Thirty Clothes...................................................................123Thirty-One Communication.........................................................127Thirty-Two Hygiene...............................................................133Thirty-Three Two Razors..........................................................135Thirty-Four More Texts...........................................................139Thirty-Five Memory, Traveling, and Order.........................................141Thirty-Six Autistics and Sexuality...............................................147Thirty-Seven Adjusting and Coping................................................149Thirty-Eight The Middle Name Conundrum...........................................153Thirty-Nine Understanding Autism.................................................155Forty Routine....................................................................163Forty-One Facial Expressions and Reading Emotions................................167Forty-Two Awareness of His Disability............................................173Forty-Three Self-Reflection......................................................177Forty-Four Cause and Effect......................................................181Forty-Five The Role as a Parent..................................................185Forty-Six Isolation versus Collectivism..........................................191Forty-Seven Shopping With Joel...................................................193Forty-Eight Protection and Accommodation for Disabled Adults.....................197Forty-Nine What do we do?........................................................207Final Dialog......................................................................211About the Author..................................................................213
Chapter One
He is Autistic
Autism is a neurological disorder that encompasses a broad spectrum of learning disabilities, including, but not limited to, Asperger's Syndrome and several developmentally delayed characteristics. Autism is not a behavioral disorder.
On December 8, 1989, Joel Arlitt Tucker was born at approximately 6:30 P.m. His Apgar scores were high, signifying a healthy baby. It was a forceps vaginal delivery resulting in Joel having a bruised nose and a broken collarbone. Joel's brother, Jacob, who had been a caesarian baby, was anxiously looking forward to meeting his new brother. Jacob was three years old when Joel was born.
While Jacob's development matched the textbook presentations, in some ways he was advanced. His language skills were quite precocious, and he demonstrated a strong and determined countenance, a high level of curiosity, exceptional intelligence, and, mostly, a great deal of care and compassion. These qualities remain true today. Among the sad things of Joel's disabilities was the realization that Joel would not become the sports partner Jacob was seeking.
After Joel came home, he seemed like a normal infant. Having been down this road before with Jacob, we were a little more confident with our parenting of infants. Joel, in fact, seemed to catch on more quickly to breastfeeding than did Jacob. With a healthy appetite, Joel's bodily functions were normal, and he responded in textbook fashion during the first few months.
We became aware of some delays at approximately six months when he had trouble sitting up for any period of time and did not become mobile until several months later. Careful reading, however, reminded us that some infants are slower than others at crawling. He did seem excessively quiet at times, and quite calm, overall.
With Joel vocalizing less than Jacob had, we attributed it to Jacob's precociousness and his unusual desire to succeed. It was because of Joel's lack of being able to walk and become potty-trained that we first began to accept the possibility of some developmental delays. Plus, his frequent ear infections seemed to contribute to many of his problems, and we attributed his delays to being a sickly child.
Relocating from Louisiana to Texas when Joel was approximately one year old, we rationalized his problems as being the trauma of moving along with the excessive ear infections. Getting ear tubes at age three, we hoped that it would cure the slow language development and inattention to the seemingly obvious. By the time we were definitely aware of a problem, we had already fallen into the pattern of constantly worrying about Joel and always looking out for him.
As do all parents of disabled children, we sought a cure, some kind of fix-it-fast system that would make our son normal, perhaps like his older brother. But in order to find the answers, we needed to know what was wrong. Hearing about a diagnostic camp where Joel would be tested for physical and mental impairments, we began to make plans for his extended stay.
The camp was located outside of Gonzales, Texas and included room, board, and comprehensive testing for children. At no cost to us, this camp, sponsored by the Elks Lodge, has provided many years of service to disabled children and their parents.
The three weeks without Joel were difficult, but we made the sacrifice in the hopes of getting answers about his future. He was four years old at the time. The marvelous camp came to an end, and with it we had several pages of diagnostic results and suggestions for his future. The term `Pervasive Developmental Disorder' was used frequently in the report, a term we did not fully understand but did accept. Pervasive Developmental Disorder is generally the label ascribed to a child who may or may not later be considered autistic. It is the first step toward a diagnosis. Included in the report were various other items, such as a shortage of mercury, a shortage of certain enzymes, a possible aversion to both gluten and casein, and several physical challenges.
It was beneficial but did not meet our expectations in many ways. We wanted a cure, but instead we received the news that Joel was delayed. We now had a term to match his problems, but no obvious fix-it solution. But in many ways, it was nice to say to people and to his school that he was developmentally delayed due to having Pervasive Developmental Disorder.
The word 'autism' was being batted about in our minds, but we were not yet comfortable with the term. Keep in mind that the term 'autism' was undergoing a transformation of sorts during the 1980s and 1990s. What was once considered a result of poor parenting, or, more specifically, a "refrigerator mother", was now being recognized as a neurological weakness with heredity being of greater cause than environment. While it is a little disconcerting to parents to believe that something from the past in the DNA, or in the family might have caused the problem, it is certainly a more acceptable reason than poor parenting to accept. It is easier and more accurate to blame our great-great grandfather than Mom!
We may have intuitively known that Joel was autistic, but it took time to accept the diagnosis. One other challenge associated with autism is the awareness that there is no cure. When parents learn that their child is autistic, it feels synonymous to no hope for the future—certainly an unacceptable position for any parent. Autism feels like a kick in the teeth to a parent, and nobody wants such a feeling. Connected to this was Joel's dislike of the term 'autistic', which is true today. He prefers the term 'disabled' and often refers to himself as a disabled adult.
Meanwhile, we tried to exist as a normal family of five. The birth of Jordan was yet another blessing, and although small at birth, Jordan quickly displayed the same precocious signs of his oldest brother. He was quick to learn, highly energetic, curious, and seemed ready to conquer the next task. A delightful child, Jordan's incredible creativity surpassed that of the rest of his family, and even today he remains a creatively gifted young man.
Joel was diagnosed as having Autism Spectrum Disorder when he was five years old. A battery of tests administered through the school system determined what we, in fact, already knew; he was autistic. We may have harbored a hope that he would be considered as having Asperger's Syndrome, but his verbal skills were not advanced enough for this diagnosis. Asperger's Syndrome is generally considered a form of autism but is characterized by high-functioning skills and higher performance on IQ tests. Often, children with this diagnosis are quick to learn but display social retardation more than cognitive or physical limitations.
Having Joel labeled 'autistic' was both liberating and frightening to us, but it did allow Joel to receive a little more needed attention and some modifications for his education. While we did not, in any sense, celebrate his disability, it was also comforting to know what the problem was and what to expect.
It also made us realize that our family did not match the typical American family very well. When other families would go out to eat, go to the mall, or go over to someone's house, and the normal parental concerns would take place concerning their children, for us it was a level of fear and concern not experienced by others. Yes, we worried about his safety, particularly since he did not seem to have any instincts about danger or the potential for injury. But nearly equal to this was his propensity to do something embarrassing and inappropriate, such as flicking the lights on and off, pulling out tissues and leaving them on the floor, wandering around the house, getting into closets, crawling under beds, running, standing in front of the television set, and constantly demanding food or drink.
These behaviors were common for Joel but caused us great hesitation in social settings. We found ourselves resistant to friendship gatherings, social situations, concerts, and even going out to eat. We became a closer family by virtue of our isolation, an isolation born out of the protection of both our reputation as parents and for the safety of Joel.
Joel was a lovable child, but his unpredictable and often disruptive behavior often caused great resentment and anger in others. Many were the times when we would receive pointed "suggestions" for improvement of Joel with veiled parenting ideas for us.
In fact, those early years with Joel reminded me of all the times I had quickly criticized parents for the behavior of their children. In my early arrogance, I was convinced that parents needed to be firmer with children, except in those cases where I thought the parent was being overly harsh and creating rebellion rather than subduing it. I had all the answers back then.
One criticism does remain, however, and that is when the parent keeps the behavior in the public limelight. A crying child in a concert is excessively disturbing, and a screaming fit in a mall is quite distracting. These kinds of behaviors ought to be kept away from other people whenever possible. Knowing that, we preferred to keep Joel away from the public eye. It was simply easier not to have to deal with the stares, the criticism, the curiosity, and the judgments.
Historically, parents would usually give children with learning problems to an institution, and, going back hundreds of years, those children would be placed in some kind of asylum where they would usually decline. In other words, parents and society would collectively give up on the children, relegating them to an unfulfilled life and an early death. This is not necessarily a diatribe against the earlier practice of institutionalization, a practice that is still necessary in certain instances. In fact, many parents believed that "an expert" or that skilled caregivers would be more helpful than having the child stay at home. As difficult as it may be to admit, we wrestled with this idea at times ourselves, quickly rejecting it, though, with a degree of optimism about Joel's future.
We hear discussions about the quality of life, about contributing citizens, about the role of education, and about 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 come across headlines and smile when we read about a sports figure, an actor, a model, or a popular musician who has achieved notoriety. We hold these people in high 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 path 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, and 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 famous actors, lawyers, doctors, teachers, or athletes? 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 succeed? Or would the inevitable failure result in more homeless people dying in the streets?
Whether you are a believer in God or not, can you honestly embrace the principal of the survival of the fittest and sit back and allow 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 its inability to sustain itself. Maybe a few injured birds 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 that they have a moral obligation to help those who are challenged to adjust to the complex world.
It seems to me that we have one of two choices with these people: 1) give up or 2) help them. 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 may call this '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.
Our attitude would not let us give up on Joel, and we certainly never made any serious plans for an institution. For one thing, he was and still is intelligent. He displays prowess in particular areas and continues to surprise us with his perception and awareness of the world. He can learn, and he has improved immensely over the years, both in his behavior and in his ability to cope. From the beginning up to the present time, we have focused on Joel's successes, minor though they may appear to the outside world.
He is constantly rewarded for looking nice, and he is generally rewarded for good behavior. He is praised when he talks, when he is nice, when he picks up after himself, when he eats properly with good manners, when he acts appropriately, and anytime he does the right thing. We never miss an opportunity to be positive with him, but we are also not afraid to remind him of the need to improve. When he does something inappropriate or socially unacceptable, we are quick to correct him and point out the correct behavior. Picking his nose is one of those actions that will bring quick correction and a reminder to get a tissue.
Dealing with Joel's obsessions and compulsions has been difficult, comedic, bewildering, aggravating, and vastly entertaining at times. Requiring nonstop energy to keep up with the latest problem, we have dedicated ourselves to his happiness and satisfaction about things that really do not matter that much. In most families, there is an old truism that when Mama is happy, everyone's happy. In our case that is true, but nearly equal is the truism that when Joel is happy, everyone's happy. Joel's times of unhappiness are so trying that nobody wants to relive the experience.
Throughout our lives, we have often walked on "eggshells" to avoid the anger fit, the frustration, or the insistence on certain things. It has often been easier simply to give in than to go to battle with Joel's problem. This has made our family life one of Joel's life. To do otherwise was to inflict great emotional stress on everyone.
This is not to say that Jacob and Jordan have never received attention. In fact, I have suspected that their successes and their drive to excellence has been generated partly due to the ongoing challenges of Joel, almost making up for what Joel lacks.
In Jacob's room and in Jordan's room are trophies, medals, certificates, plaques, and ribbons demonstrating their athletic successes, music awards, academics, and social engagements, all of which we are proud and none we would want to take away. But in Joel's room is a marked lack of the same external rewards.
Oh, there are a few things, like the Howdy Doody award and the various spelling awards, both of which have great meaning to Joel—and should. But they do not represent great effort as much as aptitude and attitude. Joel's spelling prowess is born out of an early interest in the alphabet and how words are formed. While it is certainly a gift, it is not necessarily something that was educated, but, in fact, came naturally to him. Unfortunately, his ability to spell does not lead to greater comprehension, but rather only to word construction accuracy.
The Howdy Doody award seems rather trite on the surface. He got the award due to coming into school every day with a big smile and a desire to say hello to everyone. But, in fact, the award demonstrates what is possibly Joel's greatest strength—to make others feel good. This gift is one that cannot be diminished and one that will likely remain true throughout his life. It is what gives his life greater meaning and often is the very trait we return to when we think about his future. Joel harbors no ill will toward anyone, and he has a natural compassion and forgiveness that he wears on his sleeve everywhere he goes. His appearance is snappy and is usually accompanied by a dress shirt and a tie. He almost has an obsession with ties (He has always enjoyed something around his neck.) and owns a sizable collection of ties of all types. His sharp look is often deceiving, giving him the persona of a successful businessman or banker.
(Continues...)
Excerpted from Like A Crownby Robert L. Tucker Copyright © 2012 by Robert L. Tucker. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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