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All by self; a father's tribute to his son's struggle to grow.


GETTING DOWN ON THE FLOOR, I joined you this morning and discovered a new world before me. Lying on my back, I suddenly saw the world as you must see it. I felt radiantly alive, the world around me big and mysterious, my pulse and breathing amplified. I became aware of my vulnerability and, at the same time, I felt powerfully centered. This place where you dwell is the only place to move from. Not just to raise you up to be like me, but to also grow with you in ways I had long forgotten.

For most of us day-to-day choices in life are automatic: We get out of bed, walk to the shower, say "Good morning." Rarely do we stop to figure out how to do these activities. You, on the other hand, have to decide to lift your head to see, your hand to reach, your foot to go forward.


Today was your birthday and all your friends were coming. Arriving first was Susan, your centering teacher. She took off the braces that inhibit your feet from distorting as you grow. She wants you to crawl with full feeling in your feet.

Lying on my back beside you, she turned to you and said, "Show your daddy how you roll to the stairs." You curled up and rolled one half turn. She beckoned me to follow. I rolled a little, then you rolled and squirmed, and then we rolled together. At the stairs you descended slowly under Susan's instructive touch. "Hands to face," she reminded you. "Spread those fingers -- flat hands. Give a little push!"

Your physical therapist, Faye came next. She put your braces back on and took you through sitting to standing and walked you all around the house.

Your walk with Faye ended at the breakfast table and in came Lois, your occupational therapist, bearing lemons. When Lois gives us lemons, we make lemonade. I put a spoonful of honey in a cup under the juicer spout. Lois put your hands on top of the lemon half on top of the motorized juicer, and pressing down you made lemonade.

Lois always brings little things for you to hold in your right hand. Today she brought all kinds of vehicles -- a bus, a car, a train -- you liked the airplane best. "Up" and "down" you directed Lois to fly her plane as you piloted your plane all-by-self.

Fran, your speech therapist, came in the afternoon. Fran makes you say the specific name of things you want. At least you have to try to say them. When you want something to drink -- water, juice or soda -- you cannot say "gargle" for Fran. "Gargle is the oriental word for liquid," I told her. Then I told her the true story of why you use that word for all liquids. At an early age you saw me gargling with water, and you wanted to gargle too. I gave you water to gargle and you drank it. From then on, all drinks were "gargle."

After dinner, after the cake and the candles that you almost blew out with your first breath, after the presents of which you mostly enjoyed the unwrapping, your day ended when the best therapist of all applied her great life-energy stimulation technique. Your mother's "tickle-fingers" touched your very core with radiant, healing laughter.


"Hold me!" I heard as I drifted awake from a deep sleep in the dark of night. The words came from just below the side of my bed.

"Is that you?" I mumbled, slowly awakening.

"Di-di Daddy," you said. Translation: "kiss-kiss Daddy." I thought to myself: "He can't crawl yet, so how did he get here?" I quickly reached to pick you up, fearing that your mother had brought you in to sleep close to me and, without knowing it, while I slept, you had rolled off the bed to the floor.

Your mother told me the whole story as she had pieced it together from the sounds you had made on the long journey from your bed to ours. It went like this:

You woke up in the middle of the night, as you often do, and instead of crying, you began making singing sounds. She called it dramatic play. So happy was she, listening to this new song of yours -- after the many months of your crying out several times a night for someone to come in and turn you -- that she stayed in bed, unaware of the miracle about to happen.

You became quiet. There were rustling noises and sighs of exertion. You must have put all your locomotion lessons together and rolled off your low mattress onto the floor, rolled past the fish bowl, past the dressing bench with the stand-up mirror, crawling on your back, side, front through the doorway into the hall where you crept past the family pictures hung on the family wall, putting hands to face for the thrust through our bedroom doorway, rolling and crawling quietly enough not to wake me till your surprise was ready.

And what a surprise it was! You moved a long distance: all-by-self! Delighted, I set aside the "no sleeping with mom and dad" rule and held you on my chest, smiling all the way back to sleep.


Drawing the picture of a schoolbus this morning at breakfast only intensified your anticipation. Having never drawn one before, I was amazed that I could guide your hand, while you, with pen to paper, made a pretty good-looking outline of a bus. By yourself you embellished it with swirls of windows, wheels and doors.

The schoolbus driver, Gerry, picked you up this morning for the first day of school. You were proud and handsome in your new wheelchair as you were lifted into the bus. All month you've worked diligently in the driveway learning to maneuver your new electric wheelchair. As most kids at first, you leaned on the joystick and you went around in circles. When your favorite games became chasing your brother and bumping into the stone wall, we had to redirect you so that the children at your new school would be safe from these mischievous habits. As you learned, you talked to yourself incessantly, as if issuing commands from the helm of a ship.

But you were speechless when you left for school today. Gerry asked if you were able to talk. I told her you were just being shy.

I met the bus at your school and noticed that your shyness seemed more than not talking. When I sat behind you on the gymnasium floor in your physed class, you kept your head lowered to your feet. You tried to disappear -- as if you did not believe you could do what the other children could. Your usual assertive self was missing. Though you are differently abled than the other kids, you can still do the same things -- just differently.

I could not sit still, watching you sink into the floor. I helped you sway, then stand, then walk, then hop like the others. You began to initiate those movements -- slower and at your own pace. The more you moved, the more the smile grew on your face.

When you rolled back to your homeroom it was activity time. You rolled around the room and chose your favorite: waterplay. Your "wheels" fit perfectly under the lip of the water tables and you were able to reach several cups.

You screamed when another child grabbed the waterwheel from the center of the table and put it near him. "Words," said your teacher. "Use words. We don't understand screams."

"Wheel," finally emerged from your tears.

"If you want the waterwheel, then you must ask for a turn from the child who has it," persisted your teacher.

"I want wheel," you asked very clearly.

"See it spin! I'm spinning it," said the boy. "You can have it when I'm done."

"Up and down!" you shouted. "Shower! Up and down!" Having studied the list of your special words that I had given your teacher last week, she was prepared to handle this astute communication. She turned to the child who was spinning the waterwheel with his fingers and asked if he'd like to know what you wanted to do with the waterwheel.

The other children at the table were dipping various measuring cups into the water and pouring them into the center container. They too wanted to know what you had said, and the boy with the waterwheel agreed to exchange it for a pitcher of water. The teacher set the waterwheel on the edge in front of you just above the center container. She asked if all the children wanted to help you make the waterwheel work. They held out their cups around the table as the boy with the pitcher poured water for you to pour over the top of the waterwheel. They all shouted with joy as the waterwheel turned, carrying the water from this mainstream of life in an "up and down shower" into the center.

And joy it was for all the kindergarten when Dan the Musicman came strumming in, volunteering his lunchtime to play his guitar and sing children's songs to your class. With a lick and a riff, and a lot of love, he brought forth such clapping, singing, hand signs, dancing as would befit a piper. It was for me what education is all about: setting the atmosphere ringing to bring what knowing is inside us out.

He drew from each of you whatever you wanted to do. What each of you chose to do was right in step with the others. You chose to hum along, swaying side-to-side as you sat in the midst of the music.

i felt such sad relief watching you wander out your first day into the world of others. I watched to see how the kids opened to you, accepted your special qualities, shared theirs with you. A tenuous letting go pulled at me as the wider world welcomed you into its arms.

My sadness was fleeting. In the mainstream of musically vibrating air, we all shared the same feelings, were connected in a communion of the spirit. How quickly you were integrated into the group. At that moment, my heart saw no differences between us though my eyes delighted in them.


Waiting for the light to turn on, you sat in your wheelchair at the base of the streetlight. On our block, nestled next to the mountains, deer often appear at dusk from behind trees, crossing the streets to our laws where they nibble the flowers. We waited for the deer as well as the light, searching the shadows for their slightest movements.

The light on, we traveled to the next corner to wait for another streetlight to "light on." Most nights of this warm summer we repeated this ritual faithfully until all four corners were lit, and we could go home feeling that our block was surrounded in light.

At the second light, the deer, feeding cautiously, watched us approach. Last night we watched them through the bedroom window. We lit a candle so that they could watch us. I asked you what sound the deer make. You gave a kiss. We listened to the wind wailing against the windowpanes. "What sound does the wind make?" You blew out the candle. So close were the deer, it seemed we might reach out and touch them. Though the panes of glass prohibited our touching, we felt ourmutual vulnerability.

As we waited at the third light, we noticed a little light bobbing towards us. Your brother became visible carrying a flashlight in the twilight.

"Did you think my flashlight was the light at the end of the tunnel of death?" he asked dramatically. He had heard about near-death experiences on the radio that afternoon.

"Not exactly," I said. "Right this moment we are more interested in this streetlight than in eternity."

The streetlight rewarded our patience, and off we rolled to the final one at the end of the road before turning homeward.

As we walked and rolled, your brother told us his theory about people who came back from the dead. "They say that they see a light at the end of the tunnel. I think it is the light of life they see as they return."

We arrived at the final streetlight just in time to look up and see the cold blue light begin its lovely transformation. "Light on!" you shouted as the light slowly, at its own pace, turned warm amber and lit our way home.

Ron Taylor is a freelance writer and producer of educational films and videos. He is a member of Parents of Challenged Children in Boulder, Colorado. Taylor lives in Boulder, Colorado with his wife, Judith Bea, and children, Jonah, 9, and Micah, 5. This represents part two of the article, All by Self. The first part appeared in our March 1990 issue.
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Author:Taylor, R. W.
Publication:The Exceptional Parent
Date:Jun 1, 1990
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