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.