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.