They Danced (Dedicated to Brittany S.)

She was in first grade when they met. At recess time she came over to stand by Kevin's side. She stayed. She watched his eyes; they were blue. She listened and liked the sound of his voice. She looked on the inside.

She learned his favorite color; it was green. She talked with him. She learned his language and his ventilator voice. She told him funny stories and made him laugh. She was considered brave: she wiped the drool from his chin. Over time, she learned to pick up his hands. She played with his hands and his feet. They laughed to tears. She wiped his eyes. She came at lunch time. They sat together, face to face. She learned to feed him. She knew how cold his feet were, how soft his hands were. She knew the shape of his spine, too; it had the curves of an “s.” It didn’t matter. She was there every morning when he got off the bus; she pushed him in his chair.

One day she picked up his hands and they began to dance. They danced, gracefully. They were poetry. They laughed and she knew his thoughts. He knew hers. When no one knew what he was trying to say, she knew. She knew his voice.

He walked her to class. They could talk without talking. She made him laugh. He made her smile. The sound of his breath she knew well; she often took his breath away, even while they danced.

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PS: Brittany would later go to school and become a Respiratory Therapist

Spirit and Consciousness

 Deformity of body does not mean deformity of spirit or consciousness. 

Frailty of health does not equate to frailty of spirit or awareness.

Lack of language does not mean mental depravity or an inability to communicate.

In reality, as a teacher and nurse for severely challenged children, I have discovered a hyper sensitivity of spirit and consciousness in those uniquely created individuals who are often seen as inadequate, frail, broken, or incomplete. 

Kevin's Light

     Kevin had a physical body that was fragile, broken, and misshapen. Yet, when you were in his presence, there was an immense light or joy that permeated the world around him; Kevin's spirit (his light) was extremely bright even though his body (and life) were barely tethered to earth. Kevin lived breath by breath, with assistance from a machine. His body was weak and dysfunctional, but the light of his spirit could never be dimmed or dampened; he daily brought light (and happiness) in all circumstances and to all who came into his presence.

Baseball in Bed

Kevin always was a sports fanatic. He had a passion for all sports, but he seemed to particularly love baseball. We would often play baseball while he was in bed. It was something that he really liked to do because I would try to take the time to position his body the way that a baseball player would actually bat, throw, or slide. At first I would just try to put his body into a batter’s position (with a small wooden bat in his hands). We would take great pains to get just the right arm and leg positions. He was very particular, because he knew what the proper stance was for a hitter. He knew how high the arms should be, how the head was turned and held. Once he had the proper stance of a batter, he would want to practice swinging the bat—over and over again. Of course, over time, Kevin would want me to help him make some of the noises and sounds that go along with a batter at the plate: “Hey, batter, batter, batter! Hey, batter, batter! Hey, batter, batter SWING!” After a while, Kevin would want the umpire (which was me) to call balls and strikes. Kevin, true to his nature, would not want to walk or strike out. He always, at this point, wanted to get a pretend base hit. And since he hit the ball, he would want to run the imaginary bases. 

“Mr. Allen. Can you pick up my feet, please?” he would ask. And I’d pick up his little ankles and feet and pretend like he was running the bases after just getting a base hit. Kevin, with his ball cap on, would run his heart out.

Beyond the Misshapen

     To the outsider or newcomer there is often an overwhelming recognition and awareness of the distorted nature of severely or profoundly challenged children's bodies; they are fragile, often disfigured. At times, there is a sense of being near a tortured or neglected soul.

The insider, however, does not have the same sense or recognition; their eyes see only life and beauty. The distorted or tortured soul does not prevail in the insider's thinking or view of reality; reality is much different for the insider. They recognize personality and unique individual traits; the appearance of a distorted physical nature does not fog their view of the human soul reaching out and communicating with them.

The relationships are built on trust and a mutual understanding of the purity and essence of life. A crooked and misshapen spine does not define a soul. An absence of voice or words does not limit the ability to love, communicate, or participate in living.

Under the Bed

     Somehow, we ended up spending most of the day under Kevin’s bed. I had been searching for something under his bed earlier in the morning and mentioned to Kevin that his bed, underneath, was pretty complicated with little motors and wires and stuff. Boy stuff! His response: “I want to see! . . . Can I see? His blue eyes begged--once again--for a glimpse at uncharted territory. How could I deny him?

     “You actually want to go under the bed?” I asked.
     “Yes,” he said through his trache as he blinked his eyes rapidly.
     “O . . . K,” I answered. 

     I raised his electric hospital bed as high as it would go. Then I put a pillow under the bed for his head. I made sure there was enough length on his ventilator tubing, then picked him up off the bed and laid him on the floor beneath his bed. He had everything he needed: air to breathe and something to do. While on my knees, I slowly lifted him back, further and further under his bed. His eyes became wide-eyed, as if he was viewing the Grand Canyon. This was new territory for Kevin.

     “This is fun,” Kevin said as the ventilator gave him breath to speak.

     “You are one funny boy,” I said as I accidentally bumped my head under the bed, trying to scoot beside him. Kevin laughed.

We laid on our backs for a while with our feet and legs sticking out from under the bed. We were closely checking things out. Then after a bit Kevin said: “Can we get tools?”

Laughing with Kevin

     Besides his mother’s persistence to treat him like a “normal” kid, laughter seemed to be the one thing that gave longevity to Kevin’s life. Laughter in Kevin’s life was a regular daily occurrence. I’m not talking about a light, simple chuckle. I’m talking about a deep, hard, belly laugh. The kind of laugh where your eyes water, tears flow, and your belly hurts (and you might even have bladder issues). Kevin would have this type of experience at least once a day. Those who don’t know Kevin very well, see tears rolling down his cheeks and believed he was crying. I knew Kevin to laugh hard for 15 to 20 minutes. Often, if you were around him, you would end up caught in the laughter and couldn’t get out. 

     It was great fun to get caught up in the laughter with Kevin: his teary eyes, his ventilator alarm going off, and even his nose running. While laughing, Kevin would be saying (in-between breaths from his ventilator, “My . . . tummy . . . my . . . tummy . . . hurts . . . whew!” If you didn’t know him well, you would have to believe there was a severe medical emergency happening right before your eyes; the alarms going off, the tears, the chaos and Kevin’s red face. And amidst all the chaos the nurse (me) would have to suction Kevin’s lungs and give him manual breaths with an ambu bag. Often the breath wouldn’t go in to Kevin’s lungs until he calmed down and got control of his laughter. Whew! What a ride and a rush. There was nothing like it in the whole world. I can honestly say that some of the best joys I have experienced in my life have come from laughing with Kevin. 

Complete and Beautiful

     Over the years, my own children have fallen in love with my students. Relationships have developed and endured; my 3 daughters and my students have spent a great deal of time interacting and playing together. My daughters--now young adults--have untarnished hearts and eyes; they don’t see my medically fragile students as broken or damaged, but as complete and beautiful; no different than themselves.            --Allen L.

Running with Kevin

Kevin loved to run fast; racing invisible opponents in his wheelchair. We did this often, over the years--across the playground. Kevin would say: “Run, Mr. Allen. Go faster! Faster, Mr. Allen!” (me deliberately going slow (initially). . . So Kevin would ask or say (or beg) “Go faster . . . Go faster! Then in the end, when I was breathing hard (no faking or make believe on my part—I was exhausted), Kevin would say (panting) “Whew!  . . . . . I’m tired.” In his mind and heart, he was running. I never checked his pulse, but his face would be flushed and he would be breathing (on his ventilator) as if he had just sprinted across the entire open playground—which technically, he had. 

Her Voice

She was deaf, blind and believed by many to have no observable or recognizable intelligence. To those unfamiliar to her world, this little girl was considered unreachable. However, when I held and supported her on a large classroom swing, and rocked with her back and forth, she would make sounds of contentment. Back and forth . . . back and forth. And when I would suddenly stop swinging . . . this child would bump me with her shoulders. This was no accident. She was speaking to me, saying “don’t stop, keep going, I’m enjoying this.” That little bump spoke volumes, giving her a voice, opportunities, and a personality--as long as I had the patience to listen and engage her. 

I learned, if I ignored or didn’t make the connections, her voice fell silent and her opportunities became limited to, none. I found myself in the middle of her world; a key to her voice and meaningful existence. Over time, I found her more than reachable. --Allen Lujan

Seeing Beauty

         So often we are distracted by what hovers and floats upon the surface of the severely or profoundly challenged: deformities, oddities, and abnormalities; never noticing the intricate and beautiful world right before our eyes--just beneath the surface.

Too often our eyes and minds become locked and focused upon the surface. It takes time and experience to see beneath the surface to discover a person's inner beauty and perfection of spirit.

I am grateful to have been given the opportunity to see beauty with a different set of eyes--eyes that see perfection in the flawed, brilliance in the broken, and intelligence in the imperfect. 

Beauty--however flawed, broken, and imperfect--surrounds me. It beckons me to come near, to spend time, to admire.

--Allen Lujan

Vulnerability and Trust

In my classroom, medically fragile students tend to hold back their trust until they know you are trustworthy. Over time they will carefully observe your actions and behavior. You are always being observed, judged and evaluated. They notice your tone of voice, your emotions, your pace and speed of movement, and most of all your consistent demeanor. 

Once they know you are safe and on their side, they will give you their complete trust and begin to rely and depend upon you. There are very few people they can trust and depend on. 

From the time they were born, most of my students have been closely assessed and observed; they know what it means to be poked, prodded, and tested. Because they have limited communication skills and abilities, they begin to trust only those who consistently stand beside them. They respond best to those familiar people who show evidence (and desire) to know them better for who they are--a complete person capable of giving and receiving trust. --Allen Lujan

Learning Might Be ...

 Learning might be different than anything you’ve ever experienced before. 

Learning might be as simple as making eye contact 

or smiling during peek-a-boo. 

Learning might be laughing when others are laughing 

or rolling over . . . or holding your head up.

Sometimes learning is scooping with a spoon 

or being able to drink from a straw or a sippy cup.

Learning can be sounds that communicate (but aren’t words) . . . 

sounds that speak volumes to those listening;

Volumes to those who have invested hours and lifetimes

training their ears to hear . . .

Listening and interpreting 

Guessing and … learning

From those who have been the teacher all along.

Windows to Heaven

There are little windows in our world that we can peer through and clearly see from this world all the way to Heaven. Gazing through these little windows you will, no doubt, come upon the reflective eyes of God. --Allen L

When Joy Pierces Through

     Even within the extreme limitations of a medically fragile classroom, the heights that can be scaled and claimed through tears of joy and happiness are beyond imagination. I constantly find myself in awe when joy pierces through the strained moments of daily routines and maintenance. Somehow (daily) a few moments of joy happen to occur. The good news is that joy and laughter are contagious in my classroom. The students feed off each other; they all want to be a part of the happy, chaotic, commotion. No one wants to be left out. Even those with severely limited vision and hearing are fully aware when happiness is in the air!

Expanding Boundaries

     When Kevin was still three, I can recall Kevin's mother, Susan, expanding his boundaries, away from the normal elements or comforts of bed and wheelchair.

     One day, I arrived for my shift and Kevin, from his bed, was trying to communicate something concerning a large swivel chair that was positioned near his bed. Previously the basket-shaped swivel chair had been across the living room in a different spot. When I couldn't figure out exactly what Kevin wanted, his mother approached Kevin's Bed. I thought he wanted to put the chair back to its original place; but that was not the case. His mom quickly understood what Kevin wanted. He wanted to be moved into the swivel chair. I was a little hesitant as I was relatively new and had never really transferred or moved Kevin.

     Susan asked me to give Kevin manual breaths (with an ambu-bag) while she extended the tubing from the ventilator to reach all the way to the large chair. She also put a couple pillows in the chair to better prop Kevin up. Once everything was in place, Kevin's mom lifted him and gently placed him in the chair. Kevin glanced at me while his mom reconnected him to the ventilator and adjusted the pillows. His eyes showed great joy and happiness. His mom explained that Kevin had enjoyed spinning in the chair (as far as the tubing would allow) the evening before. And now, I was being introduced to his expanding world. This would be a repeated pattern of joy in Kevin's life: always finding new ways to change, adapt, and enjoy the world around him. He spun in that chair for 3 hours that day.

Outward Looking

It took a few years of working with Kevin before I finally discovered one of the keys to his happiness and longevity—how to be happy and appreciative in all circumstances.

This discovery happened when Kevin was 7 years old. He was at home on a Saturday morning and was watching Mr. Rogers on TV while we were doing his morning routine—brushing teeth and getting dressed. Suddenly in the middle of this routine Kevin said “Look! Mr. Allen, look!” Kevin was watching a young girl (7 or 8 years old) with Muscular Dystrophy walk with arm crutches and braces. I turned to the T.V. and saw the young girl walking with extreme difficulty; her gait was very labored and required great physical effort. The young “poster child” was focused but smiling as she plotted her way onto center stage to be with Mr. Rogers. Kevin was awe-struck by the young girl; his eyes were glued to the T.V. As I watched her walk, I was more struck by Kevin’s reaction to the girl’s effort. Finally, when she made it to center stage, Kevin said (over a couple breaths from the ventilator): “Mr. Allen, that’s sad.”

I could only stare at Kevin. He was deeply touched and moved by the young girl’s limitations and extreme awkward gait. Kevin, in his hospital bed, propped up with pillows and attached to a ventilator was completely caught off-guard by this young girl’s fragile and highly noticeable plight in life.

“Kevin,” I said. “What about you? You can’t even stand.” Kevin looked at me with his big blue eyes. His eyes grew large and happy. “Oh, yeah,” he said. “I forgot!”

Throughout his life Kevin always showed compassion and concern for other people. It would have been easy to be stuck on himself and his limitations--but he never did. He always looked outside himself to the people and world around him.

Passion and Patience

     An unwavering passion or calling is required if you are to succeed as a teacher for severely challenged students. This is sacred ground: not all can walk this terrain where things appear crooked, distorted, and misshapen. A passport is definitely needed to venture into the territories of this continent; stamped inside this passport must be the words: Passion and Patience.

Stardust, not Shrapnel

Someone else might see shrapnel: evidence of tragedy and devastation. We don't see wreckage; we see promise and potential.

We understand that parents are often advised to take their children home; enjoy the remaining moments you have with them.

We are in the business of embracing life and living; we promote independence, development, and life that thrives.

We pick up the pieces: Stardust, not shrapnel.

Expert Holder of Things

     Kevin, since I first met him, was a constant holder of things. He always had something in his hands. Often it would be something similar to what activity or job was being done around him at the time. For instance, if a carpenter project was underway, Kevin would search around with his eyes until he found something that would be appropriate to hold; something symbolic that would connect him to what was happening in front of him. I often remember putting hammers and screwdrivers in his hands (one in each hand if he could). Finding the item was only half the assignment. Kevin was very particular as to how it was put into his hand. If it was a hammer, he would want to hold the hammer how someone would naturally take hold of a hammer. One of Kevin’s favorite things to hold (especially when he was in school or doing homework) was a pen or pencil. Kevin even spent his own money on pens and pencils. He particularly liked the large colorful pens (fat pens) with a rubber grip. Kevin, again, was very particular about holding his cherished pens. You couldn’t just thrust it into his hand. You had to place it in his hand (and fingers) just the way you would if you were about to write.

     Because he was so particular (and it gave him great pleasure to appropriately hold a tool or an object) I would sometimes, on purpose, put the tool in his hand sloppily or “unnaturally.” Kevin would immediately look up with his big blue eyes and give a look of disbelief. I would often avoid eye contact and play the part of the freshman nurse. This would usually just make Kevin start to laugh because he then knew that I was giving him a bad time. I would have to walk back to him and fix the tool correctly in his hand. He would look at me and smile with his eyes. He enjoyed playing, but he also really enjoyed holding things in his hands.

The Substitute Teacher

I recall a substitute teacher that Kevin had in fourth grade that helped me to better understand the importance of the little (but vital) details of establishing a friendship with someone who has severe or profound disabilities. The substitute was a lady, Miss Starla, who we had never met before. However, she made a lasting impression on Kevin. During the course of a couple of hours while in the classroom, Miss Starla dazzled Kevin. She approached him and got down to his eye level when she spoke to him. She looked at him directly in the eyes and she spoke in a normal tone of voice. This was so important because often people tend to speak very loudly to those with disabilities because they tend to think they are unable to hear very well. Well, Miss Starla spoke in a soft and gentle voice when she spoke to Kevin. Miss Starla also did something else very well. She spoke to Kevin directly, and not through me, the adult nurse hovering nearby. She acknowledged my presence, but she spoke the needed information or instructions directly to Kevin. 

     At the end of the day, as Kevin rolled out the classroom door, Miss Starla said good-bye to Kevin and gently patted him on the hand. His response at the end of the day (while riding on the bus) “I like her, Mr. Allen! I like her.” The sad part is that we never came across Miss Starla again. Her demeanor and communication skills, however, were never forgotten. She was a substitute teacher that left a lasting impression on a young boy’s heart.

Ana Watching

 Your first impression might be that this child isn’t fully capable of comprehending the world around her. She doesn’t talk, or walk. She has a hard time even holding her head up. The truth is, however, that Ana is not only completely aware of her world, but highly aware. She is always watching, picking up on every emotion and action in the classroom. Sometimes you can see the distress and anxiety on her face. For instance, when another student is being lifted or moved, Ana will usually hold her breath until the student is safely positioned. Other times, you can see her smile with joy when something silly or funny has happened. Even though Ana struggles with holding her head up, she is fully aware of what takes place around her; she absorbs the emotion and intent of each and every person that enters her world and space. Because we look on the surface, we don’t often give Ana (or others) enough credit or value for their intelligence or awareness. 

In her presence you come to realize that Ana is watching you closely and measuring every word you speak; she wants to know where you fit in and what your intentions are. In her presence you discover Ana is more aware than you ever imagined.

Hearing Kevin's Voice

     Typically, with Kevin, the start of new relationships would start small, and even seem strange or awkward. Kevin would often vocalize or call out for someone, but the inexperienced, untrained listener could not hear the sound, the call of Kevin speaking their own name; this would take time. Getting to know Kevin was always the beginning of a relationship unlike any other. Most of the time people had never met anyone like Kevin in their entire life. It would be hard to hear his voice. Learning how he used his eyes to communicate would be explained to those who appeared sincerely interested. The relationship would take time, patience and courage (on the part of others). Finally, with some reservations, and a few butterflies a few brave souls would pick his hands up, and gently use them. They would stand back and marvel at the wonder of what they had just accomplished. New acquaintances would then find themselves listening closely to each and every sound that he made. They knew that he was speaking, but the words and the voice were not yet clear. 

     Time would pass: sometimes minutes, and sometimes days. Then, suddenly, a new acquaintance would realize that Kevin was speaking to them, calling their name. The primary ingredients for understanding Kevin (learning his voice) were time, desire, and patience. 

Hands

I was his nurse; I was also his guardian, friend, and protector.
I am most proud, however, to have been His hands.

Lifting Up Kevin's Hands

     Sometimes Kevin would just look at you until he made eye contact. Once he made eye contact, he would then look at one of his hands (as if pointing and asking at the same time for you to pick up his hand and play with it. Sometimes it seemed as if his eyes were begging: please pick me up!). Then he would look back at you, to make sure you understood his request. If you did and moved toward him, he would smile with his eyes. The beginning of the experience and friendship was communication; and with Kevin, eye contact opened up a whole new dynamic and level of friendship.

     It’s hard to put into words the feeling that comes from being the hands and feet for someone who is unable to move on their own. Part of the overwhelming wonder of the experience was always the fact that Kevin craved this type of expression, and when he got it, he was extremely happy and appreciative: his face would beam and his eyes would take in every moment and movement that played out in front of him. If you lifted up his hands, even to clap them together, there would be a look of awe and wonder all over his face, as if he was suddenly recognizing the magnificence and miracle of our bodies in movement.

     Kevin understood: the movement we take for granted, Kevin cherished and marveled at. He cherished every moment that his hands were picked up and put into motion--clapping, waving, beckoning, touching, and holding. He was able to see his own body moving through space and recognized the beauty and miracle before him. --Allen Lujan

Living (not Trapped)

      Kevin was not trapped in a body--he was living in a body. Kevin was fully alive (and vibrant) even though his body could not move. Perhaps this is why Kevin so enjoyed when others would pick up his hands or feet to bring movement and motion to his body; movement which gave expression to his ongoing--ever present--inner joy. When you assisted Kevin, you became swept up (added into) the overwhelming joy he had for living.

A Stand-Up Wife

     After meeting Ron, a quadriplegic man and his wife, Sarah, Kevin went back to 4th grade a changed person. But I didn’t realize just how much he had changed. For back to school night, Kevin’s teacher asked the students to draw a picture of themselves as adults. Kevin knew right away what he wanted to draw. He decided he wanted a picture of himself as a married adult. So I --being his hands-- set out to draw Kevin and his wife. First I drew a wheelchair with Kevin sitting in it. Kevin liked this part of the picture. Then I started to draw a second wheelchair next to the first. Kevin immediately saw where I was going.

     “Mr. Allen . . . Mr. Allen” Kevin said, “No Mr. Allen.” I stopped drawing. My thinking was that he didn’t like the color of his wife’s wheelchair. But then as I listened, I wasn’t able to make out exactly what he was saying. But I could tell it was very important. It wasn’t the color of the wheelchair that was bothering him. But something wasn’t right. He kept saying something over and over. Whatever it was it had four syllables in it.

     Finally, after a few minutes, I figured out what he was saying. I smiled.

     “A stand up wife?” I asked.

     “Yes, Mr. Allen, a stand-up wife … like Ron.”

Lost in Another World

In my day to day rush of being a teacher, I usually attempt to speak and say hello to all the students on our campus. Even when it seems these students are not aware of my presence or the environment around them, I still say hello and acknowledge them by name. Often the most severe (or profoundly challenged) do not look up or even acknowledge my greeting or presence; they are lost in another world. But I know they hear me because on other days I find them gazing or vocalizing in my direction, trying to make a connection. It seems as if they are calling my name, trying to make eye contact. But often at these times I am absorbed with a task; lost in another world, too busy to reach out or adequately connect.

I recently looked up while working with one of my students and discovered a well known high school student staring into my classroom from the playground just outside the door. As soon as he knew I was aware of his presence, he started vocalizing, and stomping his feet. When I smiled at him--he smiled back and began to vocalize louder and stomp his feet even more dramatically.  He was acknowledging our contact. I have no idea how long he had been at the door watching me work. However, once we made eye contact, I knew he was beckoning me to play or follow.

Play with My Feet

     Kevin used to regularly say (or ask): "play with my feet!" Which meant to pick up and handle his feet and pretend he was walking or dancing or running; playing with Kevin's feet usually required a creative or imaginative story to go along with the movement of his feet. 

     Often, on the bus ride home, Kevin would ask to have his shoes taken off (so he would have better feeling and fun while I played imaginatively with his feet) ... pretending to run bases or jump over tall buildings--there really were no limits to where Kevin's immovable body would go.

     Kevin was constantly asking for playful and meaningful engagement, where his immobile body would magically come to life.

Demons Dismissed

 Demons arrive to distract and remind us of the brevity of life--of pain, suffering, hell on earth. 

We understand that life is terminal, suffering a portion of the mystery.

While we are fatigued or struggling with maintaining peace and order, demons often arrive to flaunt their presence, bringing brothers (shadow and darkness) ... but we are not impressed or swallowed by fear.

For a lifetime we have lived with the weight and darkness of loss and separation--demons hovering in the vicinity, laughing and jeering. They are cowards hiding from the light. Demons are not welcome here; they attempt to bury us in chaos and darkness but are quickly dispelled by the light of joy and laughter filling the room.

Demons dismissed.

--Allen Lujan

Just Like Kevin

     Kevin and his mother, Susan, were getting ready to leave our house after having dinner with us. It had been a fun and enjoyable evening. My 3 year old daughter--Marina--wanted me to pick her up and hold her as we watched Kevin being loaded into his van. As we were saying our good-byes, and Susan was making sure Kevin was secure in the front of the van, Marina whispered in my ear: “Daddy, when I grow up, I want to be just like Kevin.”

Marina truly admired and looked up to Kevin. She also knew his true state of being--happy. And that is all she saw. She no longer saw the deformed, misshapen and immobile Kevin. All she saw was a happy boy. Later, Marina would request a wheelchair for her birthday.

Silly and Strong

     In our classroom environment, adults need to show that they can have fun . . . and even be silly. At the same time, they must also show that they can be protective and strong: the teacher that acts funny, goofy and odd . . . can also stand up for you and protect you against strangers and other frightening elements of life.

     Adults, unfortunately, can often be seen as scary—especially when they are uncomfortable or nervous when suddenly found in the presence of a severely challenged child. This is a hard balance. But it seems the child will trust you more when they realize that you are capable of being a child yourself. It seems to come down to trust and understanding.

Legacy

How we educate and care for the severely and profoundly challenged will be our hallmark legacy; and for this reason, we (as a society) are being closely watched.

All the answers to our earthly existence are wrapped up in the care and well-being of the severely and profoundly challenged; the answers to all of life's hard questions are there.

Most of the time, however, we look elsewhere--microscopically inward and telescopically outward to distant worlds and galaxies--for answers to the meaning and reason for our very existence. While all along, everything we need to know to live with purpose, direction, and dignity, is right before us.

Dancing with the Queen

You could say, I'm an amateur throne builder. In our classroom, properly positioning students in large beanbags is an art and requires practice and patience. For many years, as a Special Education teacher,  I've attempted to build the perfect beanbag throne. One little girl, in particular, has often challenged my throne building skills the most.

In my eyes, she is a Queen and always smiles after sneezing; however, after sneezing, her beanbag throne begins to lose its royal luster as the bright yellow base begins to slide and shift. Her sneezing does not go unnoticed.

Seeing her tip and lean after sneezing, I rush to her side, gently nudging her back into alignment; Queens are adorable when they sit up straight, tall, and majestic--no leaning, no tipping. I see majesty in her eyes.

Sometimes I believe she sneezes on purpose, only to lean far to the right, sabotaging her throne's structure and perfection. She likes the attention; and so do I.

As she sneezes and smiles, I come to realize that God has a unique sense of humor. I see Heaven in her smile as she leans and dips, watching me run to her side. I am here, my Queen. Ask me for anything. Shall we dance? Your smile makes me happy; let's dance my Queen; you are beautiful beyond compare. Tomorrow I will build you a new throne; bright yellow and perfect. We can dance until then; a different kind of tipping and leaning.

My Queen smiles as I lift her far above her yellow throne; she smiles again as we waltz across the room.

I am a throne builder. Some day I will build the perfect beanbag throne. Until that day I will dance with my Queen.

With Awe and Wonder

     When in the presence of babies or toddlers, Kevin would constantly ask for his wheelchair to be turned so he could follow every movement and action that a child would make; he didn't want to miss anything. He understood the progression of development and the celebration of each step along the way. He was fascinated by the very things--physically--he could never do on his own.

     While watching babies and toddlers Kevin was in continuous awe and wonder of the crucial passing of milestones--crawling, standing, walking, talking--things that he wasn't physically capable of accomplishing. He wasn't bitter and never reflected a sense that life was unfair. For as long as I knew him (over 20 years) Kevin always carried a sense that he was uniquely and wonderfully made, even if he himself lacked the physical ability to crawl, walk, or stand.

     Kevin was always fully absorbed while watching (and celebrating) the milestones of others; during these moments of joyful observation, Kevin seemed to completely forget about himself.

     Throughout his life, Kevin was a highly focused observer, especially of others.

Singing in the Restroom

     As Kevin’s nurse, I used to have a hard time getting him out of the restroom at school. He loved to sing in that small, tiled room where his voice echoed and became louder and clearer. 

     He often, daily, asked to spend more time in the restroom. He had subtle ways to slow down or delay the work process in order to have a little more fun. He would often start by asking me to sing with him. He loved for me to pick up his hands and make large sweeping musical gestures as we sang. While I moved his arms and hands, he used his eyes to give full expression to the chosen song. There was always great expression in his eyes, and perhaps even more when his hands and arms were moving through the air as if he was the conductor. Two of his favorite songs to sing in the restroom were “Take me out to the ball game,” and “He’s got the whole world in his Hands.” Most days he would plead (or beg): “One more time, Mr. Allen. One more time!” And as soon as I’d put down his arms he’d look at me and say: “One more time…Please!”

Eye Contact

     One day, on a playful whim in the classroom, I put on a pair of extra-large sunglasses to attempt eye contact with a student who typically would not make any eye contact; he lived in his own world. I had attempted to make eye contact with this particular student for more than a year. Nothing seemed to work; the connection to people just didn't seem to exist in his world. To my surprise, the extra-large sunglasses worked immediately. The student cocked his head and looked past (or through) the oversized glasses. As he stared into my eyes a big grin came across his face. Our worlds met. I forgot to smile back (at first) as he caught me off guard and unprepared. I was in awe. And by the smile on his face, so was he. It was as if we had met for the very first time.

Not Buying, Just Touching.

     While spending some time at the local mall, we found ourselves inside Sears checking out the Tools and Hardware department. Boy Stuff. After I had picked up a few items and shown them to Kevin, he said: “Mr. Allen, can I hold that screwdriver?” It just happened to be a screwdriver with a real “grippy” handle. 

     “Sure,” I said and went ahead and placed it in his hand to hold (and feel).

     “Ahhh,” Kevin said. “That’s nice. I like that!” So I looked around and found something else that he might like to hold. This time it was a foot long screwdriver. Next I handed him a small sledge hammer, then a wrench, a ratchet, a hatchet, a razor blade knife and any tool I could get into his hands. Sometimes Kevin would have one tool in each hand and look for another to trade. He was in tool heaven; thoroughly excited. Once we had held everything in the “tool” department, we moved over to the “hardware” area.

     “Can I hold that, too?” Kevin asked as he gazed at the bins of nuts and bolts before him. He wanted to pick up and hold and handle everything. He was thriving on touch. We spent a good 90 minutes just handling the merchandise, with a few curious stares along the way. In the hardware department it was sponges, brushes, rope, tape nuts, bolts, and a variety of other miscellaneous items worth touching and holding. Every now and then, someone would stop and stare and wonder what we were doing--playing or stealing? A clerk tried to help us a couple of times, but then left us alone after he realized we were not buying, just touching.

   “How about that, Mr. Allen?  Can I hold that, too?"