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!

Ring-tailed Cat and My Dad

As a typical boy into fishing, baseball, getting dirty, playing cowboys and indians, and being outdoors, I enjoyed my experience in Y Indian Guides, an organization of fathers and sons dedicated to learning more about the Indians. We would gather at someone's house, adorn ourselves in Indian garb (at least our perception of what Indians wore), and talk about being an Indian, including making fires, arrowheads, teepees, and dancing. Lots of whoops and pretend horse riding took place and most nights ended with my Dad playing guitar and singing folk songs not always about Indians but still fun stuff.

Outside of El Paso stands an extended rock formation called Hueco Tanks. Ideal for camping, climbing, picnics, geographical study, and exploring, it was decided that a weekend at Hueco Tanks would be both fun and educational for the Y-Indian Guides. I recall the excitement as we loaded up cots, sleeping bags, food, and of course our Indian stuff for the trip. Arriving and setting up camp, we did some exploring and had several boy adventures. Following a good meal of beans and sausage, we sat around the campfire enjoying marshmallows and folk songs with my Dad leading the way in She'll Be Coming Around the Mountain and Home on the Range. We then laid down in our sleeping bags located on the cots and went to sleep while the Dads stayed up awhile discussing the amazing facts of Indians and the outdoor world (or at least that was what I thought).

Approximately 2 in the morning, I awakened abruptly. Opening my eyes I found myself staring at a humongous monster with massive eyes and fur. Frightening for sure but only for an instant. Almost immediately I heard the crack of a whip and a loud voice yelling "get out of here." Not totally sure what happened but relieved just the same, my dad ran over to me holding me tight and asking if I were okay. Soon the camp was alive as dads and sons wanted to know what happened. My father proceeded to explain that he heard a noise, glanced over and saw a Ring-tailed Cat sitting on my sleeping bag staring at me. This nocturnal animal is common in rocky areas and its curiosity brought it to our camp. Grabbing his whip and cracking it in the air near the animal, my father was prepared to do further damage. Likely the animal being frightened from the whip and the madman, quickly departed and we did not see it again.

The adults had a brief discussion and the kids were told to go back to sleep which we did. The next morning there was some talk of the exciting event but eventually we settled into the same rock climbing adventures, going home later that afternoon. Dad later told me that following the incident, he and the other dads took turns keeping vigilance over us throughout the rest of the night. Not really understanding the situation and probably thinking more about baseball practice anyway, I forgot about the event.

Forty something years later and now thinking back I am wondering several things. How did my dad know there was a problem? He was asleep but awakened for some reason. Did he hesitate at all? Was he frightened? Did he grab the whip, crack it and yell all in one motion?

I have to believe that fathers generally have a sense of protection for their family. They are always looking out for their children and want to make them safe. At the same time, they encourage independence and an adventurous spirit but always within the boundaries of wisdom and security. In a sleep state but somehow alert at the same time, my dad sensed a situation and without hesitation he grabbed the whip, wielded it, and ended the problem. I believe that had that cat reached out to me, Dad would have attacked it physically without regard for his own safety. Although none of this registered with me at the time, I now know his love for me and his family trumped all self-preservation to him.

Throughout my growing up and now that I am a father myself, and watching my children move into adulthood, I recognize the kind of love that spurs us onto action and protection. In many ways it is the same kind of love our Heavenly Father has for us. Now that my dad is gone, I miss him. But in truth, and in many ways, he is me. As a college administrator I realize that the lessons I learned from my father can be applied not just to my own family but to my profession as well. Love and Leadership is about providing a safe, secure, and creative environment that allows people to reach their potential. That is the kind of person I want to be. Thanks to my Dad for being the model for love and excellence. Sure do miss him!

Cause and Effect

Heading out on a Saturday morning to drop Joel off at his grandmother's house for the morning, I noticed that on this slightly brisk day guaranteed to warm up into the 80s in afternoon, Joel was donned in a toboggan, scarf, heavy coat, and gloves. I gently but also directly told him that his clothes were too warm for the projected temperature of the day. As is typical for him, he disagreed and insisted on wearing the clothes.

Choosing not to argue at that moment, we climbed in the truck for the 20 minute drive. I noticed the temperature in the truck read 64 degrees and climbing. Mentioning this to Joel, I also said it was likely going to be in the 80s by mid-morning with the sun shining brightly. He said no I was wrong that it was going to snow.

Perplexed by this pronouncement, I asked him why he believed it would snow. His response was that he was dressed for snow, therefore it would snow. I stayed quiet for a few minutes to reflect on this statement. Joel has never completely understood cause and effect. In some ways it has created some curiosity, but in other ways he simply rejects that idea. He knows that what he does can cause an effect of some kind or another, but he has a difficult time discerning or predicting what the effect will be. He cannot determine people's reactions and he cannot determine his own place in creating certain responses in other people. It is all a mystery to him.

This is partly why he wears ties, suits to football games and partly why it seems okay for him to wander around or sit when others are standing or hug when others are shaking hands or insist on playing the organ too loud or the myriad of behaviors Joel tends to do. He does not see anything wrong and cannot assess how people will react to him. Not only that, but their reactions have little meaning to him. He resides in his own tinted existence not worrying about how others see him. Consequently he does not pass judgment on other behaviors other than those events learned specifically out of experience or repetition of order. Cause and effect is peripheral at best in his world, a world without imagination and world requiring routine and order.

Deep down I suspect he knew that he could not cause it to snow simply by wearing warm clothes. He knows that neither nor anyone else governs the snow or lack thereof. Yet because he gives no thought to the reactions of other people, and because he often confuses the cause and effect of his own behavior, he somehow converted his desire for snow into a kind of demand. His appearance and yes his preparation ought to result in the weather change.

I convinced him to watch for the temperature to rise above 72 with the idea that a number would be the catalyst to change, and then further convinced him to remove the toboggan, the gloves, the scarf, and finally the coat upon hitting 72. Reluctant at first, the rising temperature number was the final convincer, making Joel realize that his clothes did not cause the snow.

Still, what a nice dream for our dress to create weather change! Would it were so.

Tough week

It has been a tough week, some of it due to my own theatre, but some due to external influences. And it was all exacerbated by my commitment to stop a nearly 50 year habit--nail-biting. I must come clean on this and express the truth, I am a devoted, relentless, non-stop nail biter and have been since being eye level with a puppy. It is a terrible vice but one that has provided immense relief and satisfaction for many years.

I have tried the various methods for quitting--nail polish, one finger at a time, accountability partners, prayer, constant gum or food, but nothing has helped. I continue to gnaw the nails as far as possible, often resulting in bleeding, pain, and grossly unsightly nails. Hands in pockets, gloves, fists have all been used in an effort to hide the truth. Yet in the end the reality shouts loud and clear--I am a consummate and complete nail-biter. Time to stop.

Yet as I type these words and can feel the nails almost touching the keys, my desire to chew them is nearly overwhelming. It is making me a nervous wreck. Four days now without biting and I want to pull out my hair (oops, another toughie!).

Added to this, I forgot to say goodbye to a good friend last Monday, I inadvertently created a lack of babysitter problem on Wednesday, and then said some silly things at various academic meetings on Friday. So it has been a tough week.

But I also recognize my own humanity and tendency to allow tension and stress to rule my reactions to events. Even as an objective and skilled administrator, I must admit to a lack of perfection. We learn from our mistakes, we grow from the weaknesses, and we only improve from recognition of the potential.

Recalling an award given to me in college where I was recognized as the "composer with the greatest capacity for improvement," I am thankful for the opportunity to improve. Improve I shall for aside from the mistakes, I am governed by desire for excellence. We press forward to the highest goals, knowing that occasionally there are bumps along the way.

The Challenge, The Success, The Journey Done

A musician is gone from this world, leaving a legacy of outstanding recordings, beautiful performances, and stunning moments of inspiration not just to those with handicaps, but to everyone he encountered. His name was Stacy Blair, a trumpet player of the highest order. A brilliant man whose unbridled talent was matched by his relentless discipline and desire for success, Stacy overcame his blindness to become one of the greatest trumpet artists of his time. I urge you to read his biography and take a minute to remember this amazing man, a man dedicated to excellence in performance. http://stacyblair.org/Stacy_Blair/About.html

As a very immature but somewhat talented horn player, when I first arrived at Hardin-Simmons in 1978, I heard the stories of the legend of Stacy Blair. Stories that were hard to imagine but indeed were true. Stories of his ping-pong and pool playing abilities, his sense of his surroundings, his ability to remember every voice and sound he heard, and mostly his remarkable talent. But these truths paled in comparison to his rigorous discipline and commitment to excellence. His gifts were immense as was his engaging personality and brilliance. As a student at HSU, Stacy was rarely found without a trumpet or mouthpiece in his hand, not wanting to waste an opportunity to improve. Yes, he was talented and had an aptitude for the trumpet, but it was his devotion to practice and learning that is the most impressive. As a sophomore at Hardin-Simmons, I finally met the legend and I asked him if he had any suggestions for me as a budding horn player. He laughed that famous contagious laugh of his and said, "Practice much and listen always!"

Because of his blindness, he learned music by listening to recordings and imitating the masters. Imitation being the greatest form of flattery, Stacy took this to another level by infusing his own artistry and personality into his performances. Specializing on the piccolo trumpet, but adept at all styles, Stacy performed throughout the world with orchestras, making beautiful recordings demonstrating his unswerving dedication to beauty and excellence. But it was his concerts at churches and various conferences that stick out in my mind. He and Dr. John Campbell on the organ performed throughout the state and beyond, gracing congregations and audiences with trumpet joy and musical artistry. When he played, his music communicated beauty and love that seemed to reach to the soul. He was not a great blind trumpet player, instead he was a wonderfully expressive, technically gifted, and incredible trumpet player who also happened not to be able to see.

His blindness was a challenge but he met it head-on with a prodigious memory. His memory was that of a computer, and his ability to organize what he, heard was without equal. I recall giving him a phone call after a few years of not having spoken with him. He answered "This is Stacy Blair" and I said "Hi Stacy, this is...". But before I could finish, he said, "Hi Rob, How are you?" I asked him if he would be available for a performance and he said with a touch of amusement, "I'll have to check my calendar." I knew his calendar was in his head! Later walking with him, I noticed he operated on two levels, conversing normally but also being aware of his surroundings, sensing obstacles and changes in the feel of the room or environment. He knew where the tree was or the chair and always knew when a person was coming close to him. He counted steps and memorized everything as he journeyed.

He was a living testament to overcoming disabilities, to having a strong work ethic, and to a life of musical expression. Yet, struggle he did at times. The life of a musician can be difficult, wrought full of financial ups and downs, great stress, fear of decline, and waiting for the next phone call. All these plus the ubiquitous problems of blindness and deteriorating health took their toll on Stacy who struggled with various challenges the last few years.

I recall spending some time with a blind pianist several years ago. I went to his motel room to pick him up for a concert at church. He opened the door, letting me in and closing the door behind him. Suddenly I was steeped in almost total darkness and rather shocked about it. I really could not see anything. Yet I could hear my friend rummaging around in the room getting things ready to go. He then asked me to grab the voice translator box that was near the bed. Not wanting to demonstrate weakness, I began to feel my way around the room hoping to touch the object and get it out to the car. Finally after hitting my foot and nearly hitting my head on something, I asked him if I could turn on the light?

He laughed uproariously and said "Of course, it doesn't matter to me." I was immediately struck by my own ineptness at handling darkness even for two minutes, realizing he had spent his entire life that way. The challenges of blindness can only be understood by the blind. As an exercise, try spending a few hours functioning in the world with your eyes shut or covered. The challenge is tremendous and the sympathy for the blind will remain with you forever.

Stacy's blindness was not an obstacle for him as a musician, but in some ways it was difficult for him as a traveling soloist. The seeing eye dog helped as did the myriad of people, but in the end it must have been a challenge and one that only a blind performer could understand. In spite of that, Stacy was a fireball of joy and happiness. Always quick to laugh, he loved life, people, and music, spreading joy everywhere he went with a constant kind word, a smile on his face, and an optimistic spirit. Who can forget his sly grin and creative spark as he offered his warm personality to everyone. He will be missed but he leaves behind a wealth of recordings and a host of people who admired him and learned from him. He gave us so much and will not be forgotten. Thank you Stacy for being such an inspiration to so many.

Who Is This Person?

Too often we spend our time reacting to other people, particularly those we love, being angry at their flaws, or hopefully loving their positive qualities. For those outside our immediate circle, we may be envious, or admiring, or full of disdain, but we rarely seem to understand or sympathize with their situation or even their own emotional condition. No, I am not teaching tolerance here, I am instead advocating a deeper understanding of human nature, autistics in particular.

From very small children to adults, rather than criticizing perhaps we should be empathizing or to take it another step further, maybe it is time for many of us to look at the world through the eyes of the challenged. The recent passing of a friend who was a blind trumpet player prompted me again to imagine a world without sight. How must that be? Each day I depend so much on my sight and my mind to process that which I see, from people to things, to this computer, to the vast array of colors, shapes, symbols that cross my path almost minute by minute. Not to have sight presents a world of darkness and imagination that must be entirely different from what sighted people experience daily.

I am not convinced that we as loving parents of our autistic son have ever truly understood his perspective on life. Sometimes I am not sure who he really is in fact. How does his brain process information, what does he see, hear, feel? We have worked so hard to help him cope and fit in to this crazy world, that maybe we have missed a thorough comprehension of Joel's inner sanctum. Yet while it is easy to acknowledge this possibility, it is far more challenging to fix the problem. Who is Joel?

I recall picking up one of those odd shopping baskets a few weeks ago that seemed to have a steering problem. While dwelling on the pitiful emotion of feeling like I always get the bad buggy, I began to compensate for its flaws. Yes I would have preferred a little more ease of mobility, and yes I had to use a touch of elbow grease to make it work well, but on the other hand, it beat having to carry cereal, coffee, meat, bread, and canned goods in my arms. The little cart struggled some but we worked together and came to some positive resolutions! Perhaps it was later repaired or perhaps someone else came along and shared in the challenging joy of steering the little guy.

At first I was frustrated that my cart did not work the way I had hoped. My concept of shopping carts did not include a bad wheel. But I compensated for the situation and after awhile, almost did not notice the problem. Unlike Joel, however, the cart could be repaired or at least get a new wheel. Joel cannot get a new brain. He may one day have the opportunity to have it repaired (although we are many years away from that kind of biotechnology I think), but for now he simply has to adjust for the inherent situation in which he lives. As parents and guardians we work to steer him in such a way as to stay on course and accomplish his goals, but ultimately he has to find a way to direct himself.

Since this is true, it is frustrating and in many ways futile to resist and try to change those characteristics that make Joel who he is. What does work is seeking to embrace his qualities and approach him in the way he approaches life, avoiding the abstract, creating an environment of trust, keeping things ordered and pleasant, and recognizing his limitations. This makes for a healthier and happier theater for him. A principle of teaching is somewhere in this essay--find him where he is and help him accomplish those things that will benefit him the most.

The Burden of Self-Reflection

My Dad used to say, "Son, you take yourself too seriously. Enjoy life and laugh at yourself occasionally." I have learned to do so and try to avoid those introspective times of self-reflection and self-absorption. But being a flawed human, I tend to operate in a vacuum of what is best for me. This is not a great quality but I have noticed it is a trait common to everyone I meet. We tend to spend too much time in self-reflection. There is nothing wrong with this unless our absorption excludes the rest of the world. My personal island is a myth and to try to live on it, devoid of others is both absurd and impossible. To take it another step, excessive self-reflection is a burden and one that can shape your world-view, carrying your problems and mistakes everywhere you go. Yes, my Dad was right, we tend to take ourselves too seriously.

Now let's talk about Joel and autism. As ironic as it seems, autistics do not generally spend much time in self-reflection. This seems a bold statement to make in light of the generally accepted attitude of autistics being withdrawn and into their own world. Yet being in your own world does not necessarily require self-absorption as much as it requires simply designing your own framework to fit your concept. Self-reflection is an exercise in creativity and imagination, both traits that are not common in autism. For to self-reflect is to spend time learning about oneself and applying those truths in the outer world. As previously mentioned, too much self-reflection leads to self-absorption and subsequently the removal of selfless altruism (Randians out there, don't get miffed yet!).

So why do autistics remain quiet and seemingly caught up in themselves? What are they thinking about? In the case of Joel, each time I ask him to verbalize his thoughts, he tells me what he wants to do, eat, play the organ, go somewhere, or he tells me something he sees or touches or is currently experiencing. But he has never told me some deep emotional thought that would be a kind of breakthrough as to what is in his head. I do suspect at times he is ordering the world around him and trying desperately to make sense of it. But I do not believe his quiet moments, days, are due to any kind of self-reflection as much as it is due to reorganizing that which confuses him.

But his confusion, his need for order, routine, for organization, for planning does not cause him depression or deep anguish, instead it causes him immediate fright and insecurity. While emotions such as these would lead "normal" (there's that word again) people to examine themselves and their own deep seated concerns, for an autistic, they are simply emotions of the moment and not worth great consternation over a period of time. It comes back to the difference between a life filled with imagination and a life filled with complexity. Imagination is a great gift and one that send us to worlds unknown and heights not attained by human beings, but imagination is the same thing that takes us to dark regions, fear, and suspicion. How often have we dreamed up a negative situation that didn't really exist? How often are we suspicious when there is no reason to be?

Self-reflection to a point can be gainful, causing us to learn more about ourselves thereby resulting in greater productivity and general usefulness. Excessive self-reflection, however, can lead to self-absorption, taking us eventually to depression and anxiety. For Joel, missing an imagination, these traits are non-existent. He is not burdened by any kind of extreme self-reflection and instead responds to life in two dimensions rather than three. This makes for a generally happy response to most situations, provided they make sense in his world. Maybe there is a magic to this idea, and maybe we can learn from this concept.

Standing for Productivity

I first began thinking about it when I saw a commercial of a man doing voice overs. He was standing near a microphone and speaking rather dramatically, even gesturing with his hands as he delivered his recorded message. He could have sat down for this since nobody would be watching him on the recording. Why not relax?

When I direct Region bands, I am on my feet all day. I only sit down on breaks or meal times. Otherwise I stay standing all day, maintaining a high energy tempo throughout my teaching. Learning that Brahms composed standing up, Donald Rumsfeld always works standing up, Generals often have standing meetings, I have decided to stand up while I work.

Added to this commitment, I noticed at the Apple store, the workers all stood while they helped customers. Same with the AT&T store. Standing must aid in productivity.

So I bought a standing desk, placed it near my old, antiquated sitting desk and now stay active all day. For one thing, it makes work fun and gives me a spring in my step. Instead of that old, creaky knees problem, I am ready to move at a blink. Signing documents is quick and easy, getting coffee is fast, and I even think my breathing is easier. All in all so far this is a successful venture.

On the downside, people do look at me oddly when they enter the office, curious why I am standing up. Also conferences are a little awkward standing. Because of this, I often sit during conferences to make the other person more comfortable. My standing desk, though, gives the appearance of energy and expectations, and as we know perception can become reality. I find myself doubly productive, interested in even the mundane tasks, and enjoying my office work. No, it is not for everyone and yes, I tend to be a contrarian at times, but I do hope to see others give it a try.

I wonder if I could try a standing meeting with some people. We might see quicker results, less distraction, and more goal-direction. Just an idea. So I stand for productivity in all things, it makes work fun.

Another accident

Let's begin with the end. Today the wound looks better and feels better, and the neck is not nearly as sore as it was. My eye feels less puffy and I can see clearer than yesterday. In other words, I will be fine. So why write about it? Surely there are more serious things to concern ourselves about than a dumb injury falling down stairs? Yet, it happened to me so here goes.

Thursday afternoon, while talking on the cell phone, holding a stack of music in one arm and a cell phone in the other, I was headed down the stairs to get to orchestra rehearsal. Multi-tasking as they say. Thinking about the rehearsal music, dealing with the issue on the phone, and slightly irritated that I could not "beam" myself to the rehearsal area, I made the decision to run down the stairs two steps at a time. Unfortunately perhaps due to clumsiness, or dress shoes, or steep steps, or whatever, I missed a step, accelerated down the stairs, stayed on feet and went flying into the wall. My forehead and glasses took a good hit, the sheet rock collapsed a couple of inches, and I ended up on the floor with blood pouring down my face and a neck ache similar to an auto accident.

Several people jumped in to help and the bleeding was stopped. In quite a bit of pain and several OTC medications later, I realized I needed some professional medical attention. The subsequent medical examination revealed superficial lacerations around the eye and head with some accompanying swelling but nothing serious. The neck, however was in a muscle spasm that needed to be relaxed. A steroid shot and a series of muscle relaxers have helped considerably, and I am now on the way to recovery.

Obviously, this situation was avoidable and could have been worse. It is not worth many more words so I think I'll stop writing. No need for platitudes about hurrying, multi-tasking, concentrating, or any number of life's lessons.

Awareness of Disability

We have never tried to hide Joel's disabilities from him but instead have sought to help him through them while constantly encouraging improvement. To remind him continually that he cannot do certain things due to being disabled would become self-fulfilling, causing him to wake up every day knowing he is different and being unable to make any kind of effort at anything. On the other side, however, it never has seemed right to affirm him and postulate dreams that cannot happen. Filling his head with goals that are unattainable is a form of abuse that is not fair.

So we avoid either kind of extreme and instead deal with Joel realistically, pragmatically, yet with non-stop encouragement of the things he can do. For example, Joel cannot drive and we do not expect him to be able to do so. He tends to focus on one thing, being totally unaware of other things around him. He also cannot filter or organize sounds, making road noise a constant roar in his mind. Further, manipulating a steering wheel, blinkers, brakes, accelerator would be too many instruments to do at one time. Not to mention that fact that anything moving quickly overwhelms him.

Recognizing this as truth, he never asks to drive and we never say things like, "When you learn to drive, you can...." It would fill him full of false dreams on the level of someone telling me I will become a professional basketball player someday. Some things just won't happen.

Yet our knowing and reminding him of his limitations is not degrading or negative, instead we continually replace the problems with his potential. About once a week we ask him to list the things he is successful doing--playing the organ, sorting books, helping in the kitchen, choosing clothes, sharing good cheer and friendliness, and learning about actors and musicals. All these and more form a complete person and provide a sense of self-worth. While occasionally we have to gently say no to something he wants to do, we always try to find an opportunity to say yes to something else.

He mentions his disability occasionally but avoids the use of the term autistic. We are not sure why but it reminds us not to tell people he is autistic in front of him. He doesn't mind our telling people he is disabled, as long as we do so judiciously without criticism. We do not advertise this fact openly but are not embarrassed about it either. We and Joel work hard to appear "normal" but often his disability becomes obvious when carrying out tasks in public. Because of this, it often helps him for us to tell someone he is disabled and therefore requires a little more time for basic tasks. Yes, there are few it frightens, but most people are patient and understanding. Besides it is good for people to learn that not everyone is "normal." Normal sure is a funny word isn't it? Who determines normalcy? What does it really mean? Maybe Joel is normal and we are not! Sorry to digress but it is worth thinking about sometimes.

I do encourage parents to be honest with their children about abilities, limitations, weaknesses, and strengths, but to find a way to do so that is never abusive and only uplifting. This way the child retains a strong sense of self-esteem while knowing his own challenges. Find the good, minimize the bad, but avoid excessive use of impossible dreams that will not happen. Since the positive qualities of an autistic are unbounded, there is no need to dwell on the weaknesses. I believe that most autistic children and adults are well aware of the things they can't do well. It is one reason for the withdrawing of personality that often occurs.

Your job as a caregiver is to help him cope, bring out his best, and provide a sense of security in as least a restrictive environment as possible. All of this forms a young man who is comfortable in his skin for the most part and who knows he is loved by many. But how do we give him a sense of ambition and dreams without creating a false world? Let's talk more about this next time.

Body Language of an Autistic

We are told it is as much as 80% of communication. Others say the number is closer to 50%. We are talking about the use of body language in communication. Whatever the truth, for an autistic, the number is considerably lower. For one thing an autistic person generally has trouble physically. Their gait is sometimes awkward, their muscles slow to develop, their eye-hand coordination weak, and their physiological makeup rather behind. It makes for physical challenges that while not debilitating are certainly limiting. And yet that aside, an autistic learner does not have the ability to perceive nor deliver appropriate body language except in an obvious basic level.

If half of our communication and ability to understand others is physical body language, then it stands to reason that an autistic is already at a huge disadvantage in communicating and/or understanding others. Add to this a disadvantage with regard to verbal skills, creativity, and imagination, and it is easy to see how tough it becomes to communicate on any kind of expected level.

If crossing your arms signifies disagreement or wanting to place a barrier between you and the other person, Joel never disagrees or wants barriers. If eye contact signifies confidence or in some cases defiance, then Joel has neither since he has serious trouble making eye contact. His body does not manifest his emotional state. An autistic does not see or read other people's body language and does not act out his own. He physically responds in a pragmatic way to the events of the moment.

Because body language is another kind of expression of imagination or creativity, it makes sense that Joel cannot experience the complexities of such. He is pretty much missing the gene that gives him creativity. Remember that he cannot lie since lying requires imagination, and he cannot fabricate a body language, whether on purpose or by instinct, that matches his mood. This is not to say that he won't do the occasional "hummph" with his eyes closed and arms crossed. We have seen that but find it to be suspiciously like a cartoon.

Body language, unless deliberate, tends to be, at least for most people, subtle and nondescript, a small extension of the circumstances of the moment. When we fear something or are embarrassed, we tend to hide our faces in our hands. When our favorite team scores a touchdown, we throw our arms open in an expression of glee. When we hear something important, we lean forward, or in boredom we begin to look around. These are commonplace reactions that seem innate although perhaps they are learned behaviors as well. None of these actions happen with autistics.

For Joel, he does not have enough complexity of expression to add to his physiology. It is enough for him to understand the event, request, emotion without having to supplement it with enhanced body language. If he does not like the food, he simply will not eat it. If he sees someone he knows, he simply approaches that person with a handshake, hug, or wave. His body language is natural and obvious, containing no deceit, no manipulation, no subtleties. Just plain, honest, simple expression without complexity. This does not mean Joel is devoid of emotion, approaching life entirely objectively, preferring a stoic existence, or a rigid approach in a kind of black and white existence dealing with facts only. No, Joel is very colorful and emotional, but he does not display in the same way we do. Instead he is very cognizant of his differences as per his disability. Therefore he generally appears to be rather cold and lacking in expression.

Please be aware that as autistic children mature, they tend to become less emotive and more protective. This is a form of maturity. Much of it is the often sad awareness that we don't always get everything we want in life. In a way, that is part of the maturation process for everyone.

Time to discuss his awareness level. Next time.

Facial expressions

Have you ever wondered why married couples begin to look like each other over a period of years? Watching couples in their 70s and 80s who have been married over 50 years and they could pass for brother and sister. It is sort of eery and not a little frightening at times. Why does this happen?

It has to do with facial expressions. Years of staring at each other and learning each others face changes and we begin to take on the facial expressions of the partner. This then results in a similar look and response to the same stimuli. While at first married couples retain individuality, eventually the give and take of relationships shows up in a sharing of facial expressions. Fascinating to say the least.

Take a few minutes to think of your own facial expressions in response to certain stimuli. Do you react the same when alone as you do in public? If you are being seen by someone or are in a group, do you demonstrate the same face as you do in private? Doubtful. We are all products of the social environment in which we reside. We may not intend to demonstrate a particular face or respond in a certain way to an external stimuli, but everyone does. Do we react exactly the same way when alone?

Joel does. He does not put on a face to prove his emotion to others. His facial expressions are natural and not contrived in any sense. He is not trying to impress anyone at anytime. He simply acts and looks according to his own inside theater devoid of external pressures of social norms. While sociologists and psychologists disagree about the nature of facial expressions as to whether they are learned, cultural, or innate, the truth is that we respond to others and express ourselves through our faces.

Unknown to him, I watched him one night in his room as he was in bed getting ready to go to sleep. He was talking to himself and obviously concerned about a couple of things. I think I heard something about getting Mexican food and not steak at a restaurant (he always prefers Mexican food over everything else). As he expressed himself, his face did alter some, nothing dramatic but certainly obvious to me. And yet his face did not match his words, at least in the normal social expectations. He registers emotions but it is not easy to tell what the emotion is.

Most of us have developed expressions matching our situation or at least demonstrating what we want others to know. In some instances I might hide my emotion with a false smile or I might even pretend to be upset for a reason (like when my children would sneak cookies before dinner) or I might feign confusion in order for the person to clarify the statement. Yet all these facial expressions are somewhat manipulative or at least artificial to an extent. Other times our faces simply register honest feelings--fear, joy, love, stress, pain, etc.

Yet an autistic person does not benefit from knowing what those faces should be. He does not develop particular expressions to match his emotion. Therefore what you see is what is most likely the most natural, devoid of any kind of social contract theory. It makes for great difficulty in assessing the feelings of the individual.

Joel recently acquired a new cell phone. It is sleek, fancy, full of games, a nice screen, and generally very advanced. He said he liked it and I believed him, but his face did not display that pleasure. We are used to this having experienced years of opening presents without hearing or seeing the joy that normally comes from that. Yet it was a little disconcerting to me. So I asked him forthright if he liked his phone. He said yes and I told him I wish he would express his joy and happiness. He thought for a minute and jumped three times with his hands in the air. That was good enough for me and made me laugh.

We should not be deceived by the lack of "accurate" and expected facial expressions to emotions. Autistics do not and will not respond according to a social norm. But they do experience emotions, strong ones, and they do have joy, sorrow, fear, and a plethora of feelings like any other human. Yet their feelings are not manifested in facial expressions typical of our expectations.

Now let's discuss body language.

The Little Routines--II

We have established the need for routine in dealing with autistic children and this idea really does not change from childhood into adult. Often the routines alter but the important thing to remember is to keep the routine even in the variation. For years composers have used a technique in music called "variation technique" that allows for the music to alter in different ways, often substantially or in some cases minimally, yet maintaining some kind of unifying element to the original theme. The melody may stay the same or the harmony may stay the same or the rhythm or something that recalls the original theme. This same idea can be practiced in dealing with autism.

We practice routines in order to give Joel stability in the world, something familiar that takes away the deep fears that may be within him. The routine makes the statement that all is well and all will be fine and the world is the same place it was yesterday. The event may alter slightly and it may be varied from how it was yesterday but it retains enough similarities to give it the familiarity that is needed.

For several years now Joel and I have some routines that while they do change some, have more or less remained. "Hey Joel," I say. "Hey Dad," he responds. We do this everyday and have for years. After his shower, he comes with wet hair and I always say, "Joel, it is time to take a ...." Joel always completes the sentence with a fast "Shower." This routine started with me pretending to be shocked he had actually taken a shower. It now is a necessary game that happens every night.

Other routines include the thumbs up to each other, the comical face to him, the broken finger game, the "I swallowed a pencil" joke, and the list goes on and on. All these things and more provide an absolutely necessary sense of order for Joel. Other things such as brushing teeth, combing hair, putting on clothes, tying shoes, washing hands, are all part of the routine of the day. We also enjoy the odd wave that occurs at a distance (this is a funny one since Joel will wave at me regardless of where I am or what I am doing).

Joel also develops routines with friends including, "How tall are you?" or special handshakes, or text messaging. All these and more serve as reminders to him that the world is stable, that love surrounds him, that there may be some bad things but the good things happen every day. Joel's need to hear music, play music, and talk to his family adds to the ever present need for routine and familiarity.

For the non-autistic, such routines could become commonplace, dull, lacking in spirit, missing the element of spontaneity. Most of us seek adventure in some form or another. But for the autistic, adventure is not found in the new, it is found in the comfortable.

The Little Routines--I

Joel requires routine in his life. He needs the routines that establish the order of events and give him a sense of stability and love. Without a system, a sequential approach to daily living, he becomes uncomfortable, insecure, edgy, fearful, and emotionally distraught. While this is generally true for people, for an autistic child it is even more pronounced.

Routines do not have to be nor should they be restrictive. They, instead, give a unification to a world that appears to be a random mess. Very little about the world makes sense to a autistic person. It all seems nebulous, frightening, unusual, and completely unpredictable. Very little stays the same every day and it all appears to have changed from the day before. This makes for an existence that could be paranoid and schizophrenic. Instead, many autistics simply prefer a withdrawn personality that is absolutely trusting when confronted. This appears to be ironic at first look, but makes sense in the thought processing of an autistic. If the world is scary, why not deny it and live happily in your own existence, rejecting those things that are threatening. An odd attitude, but think of it this way: if you see a black widow, you know to stay away from it. If you see a black widow, turn away and then turn back, you hope to see it again. But if you don't, you ought to be nervous.

But the autistic is not only not nervous, he also is no longer aware of the existence of the spider in the world. Out of sight, out of mind is the practice for an autistic. Because of this lack of a concept of danger, the next time he sees the spider or any spider, it poses no threat in his mind. I suppose if the spider bit him, he would then be hesitant about spiders, but that is a learned response from experience not from instincts. Not that he is unaware of danger entirely (although know that there is very little instinctual awareness of danger in an autistic's makeup) for he knows to look both ways when crossing a street, and the bark of dog is a little frightening to him. But in general he trusts everyone and all things. It makes for a happy, unaware existence and one in which all of us are envious in many ways.

I recall the children's story about the sister who told her parents that her brother "talked to a stranger." The Dad was horrified and proceeded to tell his little boy about the dangers of strangers and the awful things that could happen to him. The boy became frightened of everyone and everything and the world then looked like a dark foreboding place at every turn. The Mom, of course, fixed this by pointing out that good things in the world and how it is wise to be cautious and a little wary at times but for the most part life is grand and we should not be frightened of everyone. A funny little story to remind us to look at the world optimistically when we can but don't avoid realism when necessary.

For Joel, and many autistics, he cannot see the world realistically but instead see it under a different lens. A view that is ordered, positive, comfortable, rosy, and predictable. Back to the routine idea, Joel needs an ordered system to provide a strong sense of stability to his world. Without it, all is frightening, dark, cloudy, mysterious, and confusing.

Instincts of a Mother--helping your child

An autism conference is one of the most enlightening experiences a parent can have. Exhibits, sessions, recommendations, suggestions, and unlimited ideas abound, each one expounding the benefits of a particular method for helping autistic children. And I attended and examined each method as thoroughly as possible, seeking, like all parents, an answer to helping Joel, autistic since birth.

Each method has the distinction of being helpful if not for itself but at the very least for the placebo effect (which cannot be denied nor ignored for its validity). Parents ought to explore and commit themselves to examining each method with the idea of finding the "magic" cure for autism. But sadly, it will not be found. There is no magic cure for the disability. This truth however does not preclude the amazing benefits of each method, and parents need to know for themselves how each system helps. Vitamins, nutrition, behavior modification, Hyperbolic, exercise, physical therapy, speech therapy, reading specialists, music therapy, and a host of medication all forms just some of the necessary procedures for helping your autistic child.

But in the end there are two things that should never be forgotten and these two things are interrelated. 1) Never giving up on your child and believing in him or her and 2) The unparalleled and ubiquitous instincts of a mother for her children. Obviously there are bad mothers in the world and awful situations that prevent autistic children from being loved by their parents, but for most children there is a woman who loves them in spite of their challenges and who will never give up trying to help them. With this devoted and cherished love comes instincts for motherhood that should always be considered at the very top of the methods for helping autistic children.

Mothers know when their children are seriously ill, emotionally distraught, putting on an act, frightened, joyful, developing a problem, or need to eat. They know when children are teething, have a diaper problem, struggling in a relationship, are resentful, are excited, wary, cautious, or too accepting. There is a bond between a mother and her child that nothing can sever. The instinctual feelings that a mother has for what her child needs and what he or she is experiencing is so strong as to be nearly supernatural. The synergy is often so closely tied as to create a projection of success in spite of contrary evidence. In other words, a mother is often desperate enough for her child to progress that she can cause progress by sheer desire. This is the power of the placebo effect in improving disabled children.

Obviously the placebo effect does not have long range gain, but even short term improvement speaks volumes for the method. And so Dads throughout the world, when you are doubt of what is wrong with the child, turn to the Mom. She probably has a good idea and likely knows the best treatment. This message is for physicians as well.

The trials and patience

Sitting in McDonalds this morning enjoying a cup of coffee, I am reminded of the time many years ago when I came to this same establishment with a friend and two of my boys--Joel and Jordan. They were quite young, maybe 3 and 6 or so with Joel being the oldest. My friend and I decided to get a cup of coffee and I thought the boys would enjoy a pancake and orange juice.

Taking their orders, getting their drinks, and setting them down in a booth, I returned to the counter to get the rest of the food. Suddenly I and everyone in McDonalds heard a blood-curdling scream that made everyone jump, fearing the worst. Joel and Jordan had an altercation in the manner that most boys have, particularly brothers (believe it or not, I had a few with my brother here and there). It was sort of variation on property rights and seat location--"I want to sit here." "No, this is my spot." "My juice is here." "That's my juice," etc. While we try to teach our children of the time and place for altercations and we certainly we want instill in children a sense of public decorum, children do not always subscribe to the adult models.

We have all experienced the bad behavior of children and we inevitably find ourselves in judgment over the handling of that behavior. Rather than blame the child, we generally look at the parent in disgust, wondering why that parent cannot handle the situation better. There may be a part of us that knows children are unpredictable and that even the finest parenting skills cannot solve all problems, yet we still tend to pass judgment, in a form of removal and assigning responsibility. This is a major issue facing parents of autistic children and one that will be addressed more later.

Back to the problem at hand. Joel's inappropriate scream was beyond that of a normal 6 year old frustrated with his brother. It was a scream disproportionate to the situation, a variation of the schizophrenic emotional outburst not matching the stimulus. Whatever...it was loud and scary. In a mixture of horror and amusement, I quickly moved to the boys, hugged Joel to get him calmed down, solved the problem, and assuaged the grave concern of the customers present. All was well.

This scene is typical of the kind of thing we faced as parents of an autistic child. Joel could not, and still has trouble, contain his own emotional reactions. When a situation did not match his expectations, when the order became disordered, when the prescription failed, he reacted in the extreme. We did not know when that would happen or even what to do. But it taught us to be prepared, to work at meeting his expectations, and to remain isolated when possible. Medication has helped him but he still struggles a bit with this, now manifesting itself in other challenges.

We learned patience, preparation, and protection in our raising of Joel. This is part of the joys and sorrows of having an autistic child.

The clue to the middle name problem

We have never quite been able to discern the reason for his abhorrence, but the fact has remained for years that he just does not like his middle name. It is Arlitt--Joel Arlitt Tucker. Arlitt is a strong family name of German descent that eventually settled in much of Texas. It is a name to lift up and be proud, a name signifying strength and success. But he does not like it, never has, and we do not know why.

Finally in a fit of mild rage, Joel asked why everyone else has a middle name that begins with a consonant but his begins with a vowel. Often Joel's unusual statements that come out of the blue leave us perplexed, curious as to what he means, desperately wishing we could get inside his head to learn more. His statement about consonants and vowels was different, causing us to stare at him in wonderment. Further questioning revealed that everyone he knows has a middle name that begins in a consonant and it is not fair that his middle name begins with a vowel. He then said he prefers consonants over vowels.

I don't believe he hates vowels and probably looks at vowels as fillers for the rest of the word, but obviously he is more comfortable with consonants. I have known ranchers who preferred goats over sheep but didn't necessarily hate the sheep but did certainly like goats better. I guess that is another story though. Anyway, for whatever reason Joel prefers consonants over vowels and wishes his middle name started with a consonant. I threw out some options, none of which made any sense (particularly starting Arlitt with H was disconcerting!).

Finally I explained to Joel that had we known of his preference, we would not have named him Arlitt. He did not seem to understand this at all. Perhaps his lack of time understanding or the strange idea that what he thinks he assumes everyone thinks. Or maybe that nobody in his right mind would want a middle name that starts with a vowel. Whatever the reason he correctly blames us for the poor naming job we did years ago.

I suspect this problem will remain forever and other than not using his name or even referencing or making a legal request, I do not think this situation will change. In some ways, however, it is simply another example of how Joel must learn to cope with things that do not meet his expectations. In truth, life is often like that whether autistic or not. Unfortunately it becomes exaggerated for autistics.

Resignation of a Pastor

I just heard of a pastor of a church resigning. He stood in the pulpit and gave a brief, pointed, and emotional statement to the church that he did not measure up to the Biblical standard of pastoral leadership. He resigned with apologies to the church, his family, and to God. He told some that he wanted and needed time to get his heart right with God again. After hearing about this, my immediate reaction was that it was all rather sudden and seemed overly reactive to a relatively personal problem. Yet further reflection is taking me down the road of admiration.

Some mentioned that while spending time in ministry within the church, the pastor found himself in a closer relationship than his profession and commitment to his family allowed. It made for several moments of emotional upheaval and his response was to put on the brakes and go in another direction. He felt the vehicle begin to accelerate down the path of which there is no return and rather than serve his own selfishness and human desires, he recognized the immense pain of the destination and suddenly without warning stopped. The other person did the same. In thinking about this, I wondered if some kind of private counseling and "rehabilitation" of his emotional state would have been in order, but I can now see how the abrupt resignation and decision to go the other way is the right one.

I recall being a youngster on a camp out in the mountains. I thought it would be funny to run on the rocks, demonstrating my amazing athletic prowess. I was probably about 6 years old I think. Anyway I began to run and jump laughing about how easy it was. Unfortunately I headed downhill, getting faster and faster until it became obvious I couldn't stop and was headed for the edge of the mountain. The fall over the edge would have been the end of a stellar athletic career not to mention a life. As I reached the point of total destruction a man stepped over and caught me, saving my life.

There are countless examples of people with potential who through a series of poor decisions ruined their lives and the lives of others. Dating back to Judas who betrayed Christ only to follow it up with suicide, to modern examples of excessive drug use or alcohol abuse or various addictions that destroy the body, man continues to find ways to self-destruct. While we tend to operate on a tight wire, there is a human tendency to want to fall to our own death. As we look upon the Grand Canyon, we wonder if we could fly over the canyon with our hands. Man's inherent desire to fulfill his sinful nature is sometimes but not always trumped by his instinctual self-preservation. These dichotomous inclinations are in constant battle. We fight the good, often giving way to the bad. The light of our life can be lost in a second of weakness to the dark, demonstrating our amazing ability to ruin and pervert that which we have been given.

Back to the pastor. He got close to the edge, looked down the canyon and wondered if he could fly. But in a lucid moment, a moment in eternal time, a moment of self-awareness and reflection, he turned and went the other way. He saved himself, his family, his life, and made the decision to do the right thing. The precipice of disaster, the poisonous soup with the enticing odor, the bacteria masking itself as candy, all these things and more were seen and resisted by both parties involved. Temptation often creeps in slowly, displaying itself rather innocuously, hiding itself in what at first appears normal. Yet a deeper look reveals the truth. Our actions are a manifestation of our heart and while their hearts may have had some weakness, in the end was strong, leading them to the right decision. A painful one, but one all involved agreed was correct.

It took courage, conviction, perception, and determination, but he did it. He won the battle, turned and went the other direction. His life is an example of how dangerously close we often are to a poor decision, but his story is one of optimism and an example for everyone.

God is there to help us make the right decision and it is our responsibility to seek him. As it says in Micah, God requires us to be kind, to be fair, and to be humble. These three things can help us as we walk on the tightrope of life.

Thinking in pictures and ordered by numbers

Joel, our autistic 20 year old son, thinks in pictures and places everything in some sort of order. This is true in almost all instances from packing for a trip to words to music to eating, he orders his world, forcing it into a system that makes sense to him. Rather than responding to his sense needs, he responds to his unique need to have things prescribed and organized. This does not mean he is devoid of senses, but it does mean that the sensing is established as something familiar and orderly. New and unidentified smells concern him and events outside his mental framework are uncomfortable. A word not normally used becomes associated with a similar word, thus giving it absolution and a residence from which to draw.

After work, he works at the downtown public library, Joel seemed somewhat agitated and uncomfortable with his current state of affairs. For some reason this particular day at the library resulted in his having to shelve around 120 books. A normal day at the library involves around 40 books, so 120 is way beyond the expectation. Because of the volume of books, Joel did not complete his assignment until about 4:30 which is approximately 1 1/2 hours later than usual. His initial plan to practice organ at 3:30 was altered by the excessive amount of work to do at the library. In his irritated state, he demanded to practice organ although it was time to go home. The time issue was not as important as the need to keep things in sequence.

Later that evening when he was much calmer, I mentioned to him that he seemed quite flustered after work. He thought for a minute and said that he did not agree with me. He then said that he was a word with 10 letters rather than 9. Thinking through that odd statement, I asked him if he wasn't flustered, then what was he? He smiled and said he was frustrated. I then counted the letters in the word frustrated and discovered all my fingers were used up, revealing that indeed the word frustrated has 10 letters.

As I processed this unusual conversation, it occurred to me that perhaps Joel knows the number of letters in words that are spoken. I then asked him the number of letters in several long words, he responded quickly and accurately in all cases. Joel's words he says and hears from others are categorized in terms of numbers of letters. He sees the words in his mind according to their length before applying meaning. It is an odd and probably useless skill, but it does signify how Joel listens and learns. This helps us as parents seeking to help him cope in a difficult world.

He thinks in pictures, shapes, and in sequence, working to put things in order, and making things fit the puzzle piece before making sense of it. While we tend to see the larger picture and then put the pieces in place, Joel cannot always see the larger picture but can understand the individual pieces. Approaching conversations in more minute and specific ways means Joel can grasp the purpose of the word or sentence which in turn allows him a quicker understanding of the concept.

Good to know as we continue to train him to take care of himself as much as possible.

Childhood to Adult--the Convincing Conundrum

Using every educational technique available to us, just like all caring parents, we try to convince Joel what to do and how to adjust. This was true when he was a child and remains true today. Often it seems hopeless while at other times it actually happens. But we hold our breaths when he won't be convinced.

Some of the problem is his stubbornness, a character trait that is not unique to autistics and certainly not applied to all children with autism. He gets locked into an idea and will not let go of the concept regardless of the level of reasoning presented. Once it is in head, that is the way it is and no amount of convincing otherwise will alter that idea. It makes for extremely stressful moments and arguments without a good result.

Is it his personality? Is it due to autism? Is it the lack of maturation or cognitive development? Perhaps a combination of all these leads to the behavior. Joel has times of compliance and acceptance of the circumstances around him, but other times of resistance. It is the resistant times that makes our lives difficult and reminds us of the ongoing challenges of raising an autistic child.

Do you need some examples? Okay, here you go. Shower time--always a battle. He has no conception of time and often lets the shower run for 20-30 minutes without getting in. This means we have to monitor him to get it done. Clothes--he insists on dressing up including a tie even on days where it is not appropriate, like to a football game. Playing organ--he believes it is his right and obligation to practice everyday after work. Some days don't allow for that so he gets very upset about the change in schedule. Little things like wanting an RC cola, or packing for a trip a week early, or eating a whole bag of chips and hot sauce, or pouring half the chocolate syrup into the milk. All these and more tend to become major battles of concern for him. While we often give in for the sake of harmony, other times we work to teach him why it is best to do something different.

Yet the truth remains: if he is not receptive to reason, then all reasoning is in vain. So we try to get him to calm down, think rationally, see the bigger picture, and be less contentious about his own preconceived ideas. We try and sometimes succeed. This has been true for 20 years.

So it is a puzzle as to why Joel still has moments where he is insistent on certain things regardless of our efforts to convince him otherwise. It makes for tension and stress that families rarely experience. I suspect he will have these moments the rest of his life. Luckily, however, they do seem to be diminishing in frequency and in length. Just something for us to handle and always be aware of the potential of such times.

Sex and appeal in Autism

Sexual desire cannot be denied even for autistic teenagers, but because of the socialization process, a process that is mysterious for autistics, sexual desire is natural rather than forced. This makes for an awkward enculturation and confusion of responses. How should he react?

Although heavily debated, there is no doubt that beauty is a shared response of collective wisdom and current trends. We notice that oil paintings in the 16th century and earlier show women to be rather curvy, often with layers of fat that we would now consider excessive. Since an autistic teenager does not learn from the socialization around him, his reactions to beauty are devoid of external influences at least to an extent. He learns by what he feels or is able to assimilate objectively. The curious need for truth and precision butts up against the artistic need for beauty. This means his sexual responses are not governed by what others tell him or what the media portrays but instead are lead from within.

And Joel, our autiistic 20 year old son, does not seek after bikini clad, thin blondes with large bosoms. Instead he responds, but not necessarily sexually, to young ladies who are nice to him. They are not always beautiful by modern standards but instead have the kind of authentic pleasantry that he seeks in people. This makes him separate the physical from the personal. Perhaps all of us intend this in our social circles, yet I suspect if the truth were revealed, we would discover a latent sexual agenda in many people.

For Joel and likely for many autistics, he is a sexual being not dependent on the looks of the opposite sex. It really means nothing to him and he is not able to judge anyone on the basis of appearance. His sexual desires are normal and a result of growing up, not a result of what anyone has told him, not a result of the media. He is in fact disturbed by nudity and not comfortable around the flirty kind of physical response of teenagers. He cannot act that way and therefore does not understand such behavior.

It is all refreshing to know that his sexuality is not dependent on seeing inappropriate pictures or watching a beautiful young lady, but is a natural growth of what is in him. While he cannot determine what the future holds, we are certain that he is not driven by the media's description of sex appeal. This is comforting for us. Now we need to help him understand himself. A taller order.

Reflections

Sitting in the waiting room of the hospital, patiently concerned about my wife's procedure, a procedure considered a normal event at the age of 50, I began reflecting on how little control we actually have over our lives. Right now we are putty in the hands of the doctor, the nurses, the hospital, and in a broader sense the actions of time and health control the future. Of course we can all treat our bodies as temples and take care of ourselves, but when it comes down to it we are merely pawns in the health game of life, moving forward to the end.

Yet I am a bit of a control person in some ways. I want to own my temple and control my destiny at least a little bit if possible. So like everyone I try to eat right (naturally backsliding occasionally, love that ice cream!), exercise in mornings, walk in the evenings (not always consistently), park far away from the destination, take stairs not the elevator, use vitamins, fiber, and drink lots of water. Regular checkups, check cholesterol, watch the blood pressure, avoid bad habits (nail biting aside of course) and generally try to stay healthy.

Somehow though I am a little bit suspicious of this system, not that there is another way, but I have known health nuts who got very ill and have known chain smokers, heavy drinkers, obese people, and non-exercisers live long fruitful lives without any illness whatsoever. Yet I do think we owe it to ourselves, our friends, our family, and in a way to society to remain healthy and productive. No question that over eating and a lack of proper exercise is detrimental to good health. Also no question that taking care of yourself is an excellent hobby, one that leads to greater productivity. And although I may at times wonder about the excessive medical needs, in the end I do appreciate the medical field and the doctors who commit themselves to serving others.

But don't you every now then want to throw caution to the wind and eat a bunch of junk food and forgo exercising? Don't you ever so often feel a need to live life serving your own culinary temptations? And yet, as I write the words, I am reminded that we are a refined, civilized society, gaining strength and goodness with each passing day. So as in all things, we gain control by disciplining ourselves to know our limitations and to respect the system (at least to an extent).

Yes I will go ahead with the same procedure, but I don't have to like it!

Autism and its toll

Just read about the mother who strangled her two autistic children, claiming that she couldn't handle them anymore. In her demented mind, she seemed to think that their behavior justified her own horrific actions. Plus she insisted that we try to understand her plight, her fears, her situation, that we place ourselves in her position. But try as we might, killing our own children, regardless of their disability, is beyond comprehension.

Assuming her madness, the extreme state of her fragile mind, her feeling of hopelessness, and her desire to escape her cage of parental responsibility, we still wonder at a woman who had nowhere to turn, who gave up, who sought no help, who destroyed lives while destroying her own soul.

But rather than focus on the mother, let's take a moment to think about the children. Not knowing enough particulars to speak accurately, I feel a need to remind people that nobody wants to be autistic. This is not a desirable trait nor a choice. Children are not born hoping to be autistic. It is not a profession, an ambition, a dream in any sense. Autism is a disability that continues to afflict millions of children and adults. Unlike poor judgment or indecision, autism is not something that a child takes upon himself for attention or desire or success. It is not something to be rewarded or affirmed--"You are doing such a great job of being autistic." It is not a desirable disability. Children don't want it and parents do not want it for their children.

But it happens. It doesn't always happen to other people, it can happen to your children or your grandchildren. It is not an abstract, albeit oddly fascinating event that we read about in science fiction books or watch movies hoping to learn a little about the curious disability known as autism, it is real and those afflicted are around you.

A child with autism cannot suddenly change himself, rid himself of the disability, or pretend to understand the outside world. The world is a mystery compounded by the inability to adjust easily to the social norms of culture. Social contractarianism, a process children learn as they grow, is without any kind of meaning to a child with autism. It is a tough existence for a child as well as a parent, working hard to find a way to cope in a world that is entirely different from the world inside the head.

But there is also good news. There is a lot of help for parents and for children suffering with autism. While it is vastly difficult, and at times seems hopeless, in reality hope is prevalent and help is a phone call, email, book, or video away. For those whose lives are filled with despair with seemingly nowhere to turn, I encourage you to find a support group and learn how to help your child adjust. To the mother who destroyed her children as well as her own soul, perhaps the only good is the reminder that autism is serious and we should always urge those suffering to avoid the same vicious trappings of loneliness and hopelessness. Seek help. There are many who want to help.

Materialism and another loss

Walking back to the office following a funeral of a good man, I found myself reflecting again on the story he told me several years ago. Choc Wetzel, public school administrator, cowboy, family man, deacon of the church, and all round great man, once told me a story that has stayed with me.

We were driving from his place to my little place in Bangs with an old billy goat in the back of the trailer when he suddenly pointed to a spot by the highway and said, "That's God's land right there." I looked at him rather perplexed and saw a glow on his face. He told me that when his wife was in great pain from the cancer that was ravaging her body, he needed $25,000 for a surgery that would relieve her pain and prolong her life. The only way to get the money was to sell his beloved land, a small ranch he had worked all his life to acquire, the dream of his life where his horses and goats lived. Yet there was no choice. The love of his wife far surpassed the love of his ranch or his animals. She may have been against it, but without hesitation he knew he was willing to sacrifice anything for her comfort.

Waking up to get dressed and heading for the bank to finalize the sell, the doorbell rang. Standing at the door was an official looking man in a business suit. The man asked Choc who owned the little strip of land out by the highway. Choc laughed because although he owned it, the small parcel of land was worthless due to being too close too the highway and filled with caliche. The man then offered him $25,000 for it. The Glen Rose power plant needed it to extend their system.

In shock and humility, Choc accepted the offer and was able to pay for his wife's surgery. Choc and his wife are gone now, and walking with the Lord in Paradise, but the story lives on--a story of sacrifice and providence, a story that demonstrates the depth of love a man had for his wife and the love of the great Shepherd as He protects His flock.

I am changing I think and losing some of my earlier materialism. Big houses and lots of stuff no longer impress me. I find myself needing to minimize my life a little. This could be due to the amazing power of the computer and instant communication with the world. Or it could be that with a computer, music, books, friends, transportation, and coffee I am happy. I don't need a large TV, fancy chairs, expensive pens, or all the stuff that fills our lives. Just some basic needs these days (okay, that seems silly since I do like my truck, my nice clothes, hat, computer, etc.). The visit to the Biltmore mansion had the opposite effect on me I believe than most people experience. Other than the book collection which represents knowledge, nothing really meant much to me. Just a big house with lots of old stuff. Sorry to be so earthy, but it just felt excessive to me.

Relationships and knowledge reign supreme over the acquisition of stuff or the accumulation of wealth. My joy is not dependent on the objects around me but rather is found in the Lord, my family, my friends, and the peace within.

Baptist All-State and more

We sang at the Astros game and had a blast. Astros won with two homers and some tight pitching. Just a fun day all the way around. Worship time was also great and several students felt the moving of the Holy spirit.

In spite of the lower numbers, I am encouraged by Baptist All-State this year and the quality of the students. In addition to having strong players in the band and excellent singers in the choir, the attitude of the students is positive. They diligently apply Christian principles in their worldview and seek Godly wisdom in their decisions.

Plus the students are just plain fun. They laugh easily, love the Lord, love music, and treat each other with respect and dignity (mostly anyway!). I love to see students holding doors, picking up trash, carrying trays for each other, offering to help, and generally exhibiting a servant like attitude toward others. Our trip to a residential center for adults with functional disabilities further demonstrated the compassion and loving spirit of our students as they interacted with autistics, down syndrome clients, and various disabled adults. It was heart-warming and touching in all respects.

The musical experience was positive and the audience response tremendous in all our concerts. The adults and the students worked together to create a week of music giving glory to God and expressing the joy of the Lord. I hope to see continued commitment to this fine institution. Next summer, I will be directing the band! Can't wait.

Joel and Packing

Joel's world is ordered. Without a sense of order, Joel has trouble functioning. As pointed out earlier, he can accept a certain amount of ambiguity provided it is planned ambiguity. For example, the bus picks him up everyday between 12:15 and 1:30. It would be ideal to establish the precise time of pick up, but unfortunately the system does not allow for that. Yet Joel is comfortable knowing it will happen within that established framework, planning for the somewhat nebulous time for arrival.

But overall he needs order to find meaning and cannot live in a constant state of confusion or randomness. This weakness, if indeed it is a weakness, is related to his lack of creativity and imagination. Looking at this from another direction, with exceptions people with a messy desk, car, or who lead a spontaneous lifestyle generally have a greater degree of personal creativity and imagination. Obviously this generalization has a consequence in that extremes are rarely beneficial in any kind of sense.

As an aside, I knew a very creative but dysfunctional musician whose lifestyle and personal habits were completely without order, resulting in total physical and personal messes without any kind of productivity at any time. It ultimately caused his own health and career demise demonstrating how any extreme rarely has any gain.

Joel, however, uncomfortable with spontaneity, missing an imagination, and not developing a sense of dreams, replaces this ingredient with a need for order amidst the chaos of the world. Loving to travel but needing to know where, how long, what to bring, and what the trip entails, he packs accordingly and specifically. Obviously this is not an unusual trait, for many people prefer to pack fastidiously, planning for the trip and any contingencies.

Where Joel differs is in his system of packing and determining the items for the trip. He lays out his clothes in order of days, sets out his personal items, creates a spot for other things--Italian dictionary for example, counts the items within the stacks and packs accordingly. He then applies the number needed, exacting the items numerically. This means that if he has packed 8 personal items on the trip, there is something missing since there should be 9. He then seeks out the 9th item whatever that may be. While most people simply make sure their deodorant is present, he instead numbers it among the 9 personal items needed. After counting the total, he then seeks out the precise number of the item.

When we were returning to Texas from North Carolina on a recent trip, he was somewhat perplexed since item number 7 was missing. Thinking through it, he found item number 7, a razor, in the shower. This completed the total and allowed him to finish packing for the return trip. His system works for him and demonstrates his continued need for order and systems. He is lacking in creativity and imagination and yet it is easy to see that he simply rewrites the definitions of those terms according to his own needs. Seems to me that it takes imagination to organize his life by his system. We may not always understand it, but we do respect it.

It's a mess, but what the heck!

Okay, true that church music is a mess. Who knows what it should be or even is today? Should we be "contemporary"? or "traditional"? or "blended"? or "liturgical"? or "rock"? or "classical"? or "WHAT?" It is just a hodge-podge of abject confusion with no foundational past or projected future. In fact I am not even sure what my own preferences are anymore. Organ? Drums? Guitars? Orchestra? Piano? Acapella? Rock? Jazz? Classical? Choir? Praise team? Solos? Tracks? Slow? Fast? Loud? Soft?

Growing up in a Gospel/Baptist style, I quickly became a skilled and academically trained musician resulting in a plethora of professional experiences as a horn player, conductor, composer, and manager. In church settings, I have had opportunities to perform in Roman Catholic services, Jewish services, Methodist, Presbyterian, Unitarian, and several ethnic related denominations. From "high church" to "gospel/country" style, I have done it all and oddly have loved it all (okay, most of it anyway). Drop me into an Anglican church singing old hymns with an organ leading the way and a small call and response choir and I am happy.

Conversely, I am completely comfortable in a Gospel setting or rock contemporary or even African-American stylized emotional service. I can move with the best of them and have a charismatic (not tongues, don't worry) side that comes through occasionally. I love Praise and Worship music and am always eager to hear the latest chorus, but I also love "cultivated" choral music of John Rutter or "classical" string playing of Bach or a Handel Organ Sonata. It all plays a role in my faith and my joy of the Lord.

But to return to the question--what is right? What kind of of music, what style, what approach is the right one for churches today? At Ridgecrest, while the piano was important, it was the trap set that drove the music. Except for the Dennis Jernigan concert which was voice and piano, the drums set the tone and style for every hymn or chorus performed. In Biblical times, the drum set did not exist as we know it today. Perhaps this is a good reason to reject it. On the other hand, very little that we have today existed in Biblical times--instruments, lights, carpets, microphones, computers, even dress shoes, etc. Are the drums in themselves pagan or adversely secular? Scripture references drums and cymbals! Is it the beat of the music that is offensive, reminding us of hard rock on the radio with its sexually oriented words? Does a trap set move music from being "cultivated" or "classical" to being "populist" and youth oriented? Or does a trap set simply attempt to cross generation lines and give the music a familiar drive, modernizing old hymns and making them fresh?


Should my academic training govern my preference for "cultivated" or "artistic" church music? Probably not but it is hard to escape just the same. Sometimes I remember the old days at Music week in Glorieta where we focused on a large oratorio by a well-known composer and used a full orchestra and where the magnificent organ drove the hymns to great musical heights. And I get a little tired of the trap set at times and the constant syncopated rhythms of the choruses and the "building up" style of choruses and church music today. Sometimes I long for the days of simplicity and homophony of the hymns where we sang in four-part harmony and did all stanzas (or at least 3 of them!).

And yet there is no denying the powerful emotion of today's church music with its driving rhythms, punctuated text, personal statements, and extremes of joy and sentiment. While I once abhorred those crazed charismatics who lifted their hands toward God in a cheap display of their own false piousness, I now share in that experience which is a glorious way to reach out and physically express a closeness to the Lord our Savior. I cast my judgmental nature aside and accept the myriad ways to express my deepest thoughts of God's goodness. No more anger, no more intolerance, no more criticism (okay, at least not as vitriolic anyway), and no more selfishness, I now realize that God can bless us when we come to Him with an attitude of love, tolerance, and devotion.

Does this mean I have no more standards for music making in church? Absolutely not for I will ALWAYS battle for excellence regardless of the style presented. We should strive for the best in terms of accuracy, sound, text, harmony, and joy. It all plays a part in the worship experience. Praise God for giving us the opportunity to sing and play to Him. Thank God for forgiving us our painful judgments against our fellow man.

Yes, I miss the old days but I love the new days also. Mainly I feel blessed every time I join with my fellow Christians in Praise. Church music is a mess because mankind is a mess. But what the heck, let's jump in and worship in spite of our failings, doing our best to worship Him, and loving each other, setting aside our differences for the sake of the greater good.

North Carolina and music

Being our last day in North Carolina at the Ridgecrest conference center, I feel a need to write a few words of our experience. It is certainly beautiful here among the trees and rolling hills that become mountains of greenery and gentle aesthetic joy. Giant trees adorn the cascading landscape and seem to tower above the land, touching the blue sky that blankets the world in mesmerizing magic.

At first I felt rather claustrophobic in that things seemed close together and the sky was so far away. In Texas, particularly as one travels West, the sky feels close and the sight line extends for miles. Yet here in North Carolina, the sight is limited and one feels like a bird sitting in a nest wondering what glories exist outside of the home. But after a time, I began to accept the landscape and now feel as though a security comforter surrounds me. Different from Texas but splendid in grandeur.

The week itself was enriching in many ways--musically, spiritually, and physically. Highlights include a marvelous concert by Dennis Jernigan, a Christian artist with a strong testimony, immense talent, and an enviable career. Yet many great musicians walked the steps of Ridgecrest this week--Michael Adler, Dick Tunney, Craig Adams, Jay Rouse, the Sisters, and Brian Free and Assurance. One great song after another kept us engaged in worship. Fast, gospel, slow, meaningful, powerful music seemed to merge together to form an unforgettable experience for everyone present. It is hard to say which moment or which song was the favorite.

A side excursion took us to the monumental and famous Biltmore Mansion and estate where we walked and walked from room to room through the gardens and onward to the farm and winery. The magnificent structure was totally captivating including the pantry, dining rooms, exercise room, indoor pool, music room, and lavish art. The room that left me aching was of course the library with two floors of books I was desperate to study and hold. Yet the rope (and the guards) kept me from acting upon my temptations and I exerted great self-control, coveting along the way the books. Quite an experience all told. The rich are different that is for sure.

Back to the conference. Yes we played in the orchestra, hiked the trails, prayed, drank coffee, and even did some book shopping in the little town of Black Mountain down the road. Not wanting to leave yet knowing we must return, I finish this little essay up by saying that I feel blessed to have my family with me and to have the opportunity to worship God in so many ways.

See you back in Texas!

Band camp, Ridgecrest

Reflecting on this past week at band camp, I am once again encouraged by today's students. We had a very positive week with over 300 band students on campus. Their spirit was uplifting and while I cannot say I heard zero complaints, I can say I heard very few. They worked hard, played hard, laughed hard, and stayed focused the entire week. There was a dedication to the goals of leadership, musicianship, and skill that was contagious, infecting students and teachers alike, pervading the camp at every level and infusing it with a blend of affirmation, responsibility, and purpose.

The camp though was and always has been hard work for very little monetary gain. In addition to the weeks of preparation, publicity, paperwork, finding staff, getting facilities ready, the week of camp is pretty grueling. Up early every morning, in bed at midnight with a full day of teaching, directing, and solving problems, it takes its toll by the end of the week. Yet my own role is somewhat minimal in that I get to direct the top band but don't have to worry about the weeks of preparation, a job for Corey and Cathy Ash. They did marvelously this year and are to be commended for their thorough approach to the complexities that form band camp. Incidentally, I had a blast directing the Wind Ensemble. What a great band and a wonderful group of students.

And now after a day of rest we head to Ridgecrest for music week. Usually we go to Glorieta but due to the lateness of music week at Glorieta, we opted for Ridgecrest. While I often wish more publishers were involved, and I believe if so we would see a greater influx of music ministers, at the same time there is no question that Mike Harland and staff at Lifeway do a great job. The music is always rich and full with an appropriate blend of old and new designed to teach and to worship. We enjoy playing in the orchestra, walking around the camp, spending time together, and drinking coffee (okay...I enjoy the coffee!). Mostly we feel comfortable letting Joel roam, knowing he will be safe, and allowing him the latitude to experience the camp in ways that are meaningful to him.

After a week in North Carolina, we return and get ready to go to Baptist All-State in Houston. Jordan is going on his 3rd year in Baptist All-State and enjoys it every time. Such a great opportunity to play his instrument for God's glory with other young Christian leaders. Sadly, for many reasons that cannot be articulated in a few sentences, Baptist All-State is much smaller than it used to be and no longer receives the financial backing from the BGCT due to the myriad of ministry needs around the state. While it is certainly understandable, it also makes for an untenable position, charging high rates in an effort to keep the organization legal, protected, positive, and solvent. Yet charging high rates makes it a group comprised of those students with access to resources. This then is the dilemma of churches today. Are we seeking the wealthy to support our institutions or are we truly committed to the mission of outreach for everyone? Are we as Baptists inclusive or exclusive? Is there a balance?

Nevertheless, in spite of the concern, Baptist All-State remains a positive experience for students and its 34 year history has produced hundreds of Christian Leaders. This reminds me of some truths--man seems inevitably to mess things up that are good, and yet God somehow finds a way to create good in spite of man's innumerable flaws!

Onward to North Carolina, Houston, then returning to direct 10 performances of the musical Annie. It all makes for an exciting summer. In the midst of these events, I have found time to do some counseling of former students, help some high school students, work around the house, clean up my office, start my book business, and watch my oldest son get married. Life is grand!

Events...

Driving to Brownwood for the visitation of Jay Adams, we had a blow out. After a quick study of the tire, I realized its future was hopeless and decided drive a little longer to find a better spot to change it. Luckily my three boys (practically men now!) were with me. So each of us had a job to do and we got it changed. It would not have been difficult, except for the "packaging" of the system was challenging. Getting the spare tire was especially difficult due to strange instructions in the manual. Finally out of frustration, I crawled under the car and muscled the thing out of its imprisonment. We got it in place and went on our way, all of us dirty, tired, and more than a little cranky.

But I was pleased with how my boys jumped in and helped. They didn't even text message while we were working on the tire. In a few days Jacob, the oldest, will be married to Olivia. We love her and realize he made the perfect choice! She is a special young lady whom we are honored to have in our family. Sometimes I remember my little boy holding my hand when crossing streets and asking me lots of questions, watching sports shows, movies, and singing children's songs. But I'm glad he grew up and now is taking the next step in adult life--marriage! He has also recently had a research project accepted and will be flying to Rhode Island in October for a poster presentation.

Lost another good man this week--Jay Adams. Fine coach, fine man, loved his family. Jay made the world a better place with his values, his personality, and his love of life. Family and fishing ruled the day for Jay who kept his Christian faith throughout his life. He was 53 when the cancer finally won. He will be missed and leaves behind a wife and three daughters.

I can't believe how poorly I played piano this morning. I can really be average at times. I just get a little nervous trying to lead from the piano and sing at the same time. It probably was okay, but I didn't feel great about it overall. Yet worship is really not about me but is about Praising God. Maybe people can overlook my imperfections and Praise God anyway!

Okay, I ended up marking through the forged signatures on two first editions and selling them to Hastings for $5.00 each! One of these books cost me $250. Quite an investment--pay $250 and sell it for $5.00. Talk about a market drop. Oh well. I suppose I could have lost my self-respect and waived my integrity and tried to sell it as a real signature, but I just don't have that in me. Better to rid my stock of the crime, than to perpetuate the evil. You may think I am overstating this but I believe that forging a signature is an evil act of criminality that should be prosecuted. Just because it is a book does not make it any less of a crime. It is a form of identity theft. Books gone and my integrity still intact. In the end, maybe my integrity is worth more than money. What do you think?

Book collecting and selling sure has its ups and downs. I have learned much and my business continues to flounder. Still it is nice to be a small business owner. Just gotta keep working at it. Meanwhile, I have lots of music to write.

A word or two on Guardianship

We are the legal guardians of our son Joel in the State of Texas. He is an autistic 20 year old who, although is a joy and makes the world a better place, cannot function independently. We spent quite a bit of money for lawyers and went to court to receive legal guardianship of our son. We did so to keep him protected from anyone who may wish to take advantage of him either in the work place or in a relationship.

His limitations include being unable to drive, being unable to communicate with great meaning, being unaware of subtleties, not understanding danger, and lacking in the imagination needed to solve basic human problems. So we asked to take care of him and be responsible for him. It is a heavy responsibility and goes against the American Dream of getting your kids out of the house and on their own. Yet we are comfortable in the role as guardians. I was confused as to why the court system made it so difficult and expensive until I discovered that some people ask to be guardians of the elderly, particularly those with money. Guardianship includes overseeing accounts belonging to the individual.

Since Joel had no money, it was an easy solution for us to assume guardianship. If we ever leave the state, however, we will have to reapply for guardianship with another state. This means that we will try to transfer his files to another state. Yet, due to a variation of "institutional arrogance" the new state will want us to start the process anew to ensure we are not trying to get control of Joel's estate. Remaining in the state means we will always be responsible for him. We are fine with that and accept it as our obligation to our special needs son. While some may see this as a burden, we, instead, see it as an opportunity to help and protect Joel as he matures and becomes an adult.

Parents of disabled children need to keep careful records and begin to make provisions for the future, including living arrangements, financial help, physical needs, and legal expectations. Guardianship is an adequate solution to those adults unable to make protective decisions for themselves.