We extend happy New Year greetings and wish the best to all our readers.
Our upcoming social meeting will be held on Friday, January 14th from 6:30 p.m. to 10:00 p.m. at CARD - the Collinsville Area Recreational District (Splash City). The address is #10 Gateway Drive. Directions: take 270 East, exit on 255 South, take 55 North, go to the first exit, which is Route157, take a left on 157, go to the second light, which is East Port Plaza Street, take a left, go to Gateway Drive and turn right, go ½ mile to the CARD Office which is on the left side of road. Food theme is Chinese. Copies of the Health Care Guidelines for Individuals with Down Syndrome: 1999 Revision, edited by William I. Cohen, M.D., for the Down Syndrome Medical Interest Group and published in the journal, Down Syndrome Quarterly, Volume 4, Number 3, September, 1999, will be available.
Mrs. Dale Sheets, Human Resources Director for Challenge Unlimited, Inc., 466-5070, Fax: 466-5085, TDD: 466-5076, spoke at our December meeting on supported employment and the topics of recruitment, vocational evaluation, transitional work services, supported employment programs and placement services.
We would like to publicly thank Mr. Ken Hamm of Cahokia for providing us with articles on Down syndrome, culled from the media, which we have re-printed in previous issues of our newsletter.|
Each One Reach One by Peggy Mitchell. This is an appeal to our brothers, sisters, and neighbors to increase the current network of people diagnosed with Down syndrome to include older children, above the age of 9 years to adulthood. Please invite, encourage and/or bring them to our next meeting. We have established definite dates (2nd Friday of each month), definite times (6:30 p.m.) and definitely food. Our goal is to look at how Down syndrome affects individuals from past to present: you can not go forward if you do not know where you have been. Let us begin with the goal of helping others around us: an obstacle you have overcome may be someone else's stumbling block; and a goal to educate our families, friends, neighbors, county and state to the possibilities of persons with Down syndrome. Illinois has an outstanding Early Childhood Program; reality sinks in when you begin to work with the school districts. You need to be prepared emotionally and educated on what to expect and how the system works. Childhood is a small, but important part, but are you aware on how to prepare for you child's special needs? Can you help fulfill your child's hopes and dreams? As parents, it is our responsibility and pleasure to assist our children with their path in life. Let us begin to work on their dreams by opening networking avenues for all children. Whether you are 50 years old, or 50 days old, with Down syndrome, we need you and all the support behind you. Let each one reach one and let the new Millenium begin on the avenue of all our dreams becoming reality.
moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175.|
Editor: Victor Bishop
Web Site: http://www.riverbendds.org/
March 11. Down Syndrome Association of Greater St. Louis Educational Conference. The conference will feature speakers of a variety of topics to parents and professionals with a concurrent conference for individuals with Down syndrome ages 15 and older.
March 24-26. Family Conference 2000 at the Crowne Plaza in Springfield. These two days will be filled with informative sessions, special events, and opportunities for networking. Many state agencies will also be available to highlight their family program/services. Conference fee: $99.00. Financial assistance is available. For a conference program or for more information call Susan Ferry at (217) 824-4776, e-mail: email@example.com or Sharon Gage, STARNet 397-8930 ext. 169.
STARNet Region IV
February 28 9:00 a.m. - 3:00 p.m. The Floor Time Approach: A Way of Relating to Children. Presented by Jennifer Rosinia, M.Ed., OTR/L. Jennifer's primary areas of expertise are in the neurosciences, in particular brain development and sensory processing. This workshop is a five-step process that can be used by teachers as well as parents to help support the emotional, social and communication development of young children. This workshop will discuss theory and philosophy as well as examine practical uses of suggested techniques. Location: Holiday Inn, Mt. Vernon, IL. For further information, contact Kathy Hollowich, 397-8930, ext. 168, e-mail: firstname.lastname@example.org.
Down Syndrome Articles
Loving Adam excerpted from Expecting Adam by Martha Beck. Reprinted with permission of the author from Reader's Digest, http://www.rd.com, p. 132-8, September 1999.
Expecting Adam Copyright © 1999 by Martha Beck, Ph.D. is published at $23.95 by Times Books, a division of Random House, Inc. 201 E. 50 St., New York, NY 10022.
Before Adam arrived, I worried that he would slow me down, and in the 11 years since his birth, he hasthank God. Because of him I notice what is in front of me, its mystery and beauty, instead of thrashing my way toward achievements that contain no joy in themselves. Adam takes his joy straight up, in purer form than most of us can handle.
I didn't think it would be that way. When I first learned my baby would be born with Down syndrome, I was devastated. My husband, John, and I are Harvard alumni who once held intelligence as the prize above all others. I remember passing a homeless man who looked at my abdomen and said, "Congratulations, Mama!" If he only knew, I thought bitterly.
Now the memory makes me smile. Maybe that man did know. Maybe he was an angel in disguise who could have told me, "Your little boy may not look like what you asked for, or be able to perform all the tricks. But he will light up your life."
Something in my son always manages to see past the outward ordinariness of a thing to any magic it may hold inside. One Christmas, for instance, he fished around under the tree until he found a package with his name on it. It was from my friend Annette, his honorary aunt.
He tore the paper off the package, holding his breath, and found-batteries. An eight-pack of D's, still encased in plastic.
"Oh, honey," I said, "that's not the real present." I was going to say that the batteries were meant to go in the big, noisy, light-up gun that I knew Annette was giving him, which lay still wrapped under the tree. But Adam was staring at those batteries, his mouth open in astonished ecstasy. "Oh, wow!" he said. "Morn, look! Batteries!" (It actually sounded more like "Morn, 'ook! Agga-bies!" but the message was clear.)
Before his father, sisters Katie and Lizzie, or I could divert his attention to any other gift, Adam leapt to his feet and began running around the house, locating every appliance, tool and toy that ran on batteries. The whole time, he babbled excitedly about all the things he could do with this fabulous, fabulous gift. As we watched, it began to occur to all of us "normal" people that batteries really were a pretty darn good Christmas present. They didn't look like much on the face of it, but think what they could do! Put them in place, and inanimate objects suddenly came to life, moving, talking, singing, lighting up the room.
Adam also has a way of putting my worries into proper perspective. When he was three years old, he could not speak. It was terribly frustrating for him, and it just plain broke my heart. I worked with him for hours, doing the exercises the speech therapists had taught me, but had no success whatsoever. I had to face it: Adam couldn't talk. Not at all.
One day, after hours of unsuccessful therapy, I hit a low point. I took my three children to the grocery store and offered them all bribes to keep quiet-I was too tired to enforce discipline any other way. Each could pick out a treat from the candy stands next to the checkout counter.
Katie chose a roll of Life Savers and Lizzie a chocolate bar. Adam went over to a basket of red rosebuds and pulled one out.
"This is what you want? " I asked incredulously. He nodded. "Honey, this isn't candy," I said, putting it back and turning him toward the rows of sweets. "Don't you want candy?" He shook his small head, walked back to the bucket, picked out the rose and put it on the counter. I was baffled, but paid for it. Adam took it gravely and held the flower with both hands all the way home. When we got there, I was immediately engrossed in putting away the groceries and forgot all about his strange request.
The next morning I awoke to find sunlight streaming through my bedroom window. John had already left for the day, and I heard quiet babbling coming from Lizzie's room.
As I yawned and stretched, I could hear Adam's small feet padding down the hall toward my room. He appeared at the door with the rose.
Walking over to the bed, he held out the flower and said in a clear, calm voice, "Here." Then he turned around, his little blue pajamas dragging a bit on the floor, and padded out.
Another of my biggest fears had been that Adam would never learn to read or write. From the time he started preschool, John and I ran through the alphabet with him, repeating each letter. But Adam never recognized the letters on his own. By the time he was six, I was ready to give up.
Then one day, John held up a plastic letter e and sounded out, "Ee." Adam suddenly perked up and said, "Wisbef!"- his way of pronouncing his sister Elizabeth's name. John and I stayed home from work to celebrate. We discovered that Adam's learning capacity went way beyond anything we had expected-as long as it related directly to someone he cared about. He had no interest in "E is for egg," but E for Elizabeth, G for Grandpa, K for Katie, M for Mom-now that was crucial information.
Another time Adam came home to tell me about the new boy in his class who had become his friend. When I couldn't understand his pronunciation of the boy's name, Adam grabbed a pencil in his stubby little-boy fingers and wrote "Miguel Fernando de la Hoya" on a piece of paper that, needless to say, I intend to frame. If I ever need a dose of Adam and he isn't around, I'll look at the clumsily written name and remember what it is like to tap into an intelligence powered exclusively by love.
Living with Adam, loving Adam, has had moments of pain and disappointment, but mostly with people who look at my son and see only the deformity of their own perceptions instead of the beauty before their eyes. More and more, I feel this pain, not for my son but for the people who are too blind to see him. Once I was blind, but Adam has given me sight. It is impossible to look at his smile and not smile back.
Albert Einstein once said that the single most important decision any of us will ever make is whether or not to believe the universe is friendly. When Adam grins, its clear he has made that decision affirmatively.
Now I rely on my amazing little boy to be my guide in this new world where joy is commonplace, Harvard academics are the slow learners and children with Down syndrome the master teachers.
What Love Can Build by Meg Laughlin, from the Miami Herald's Tropic, June 21, 1998. Reprinted with the permission of the Miami Herald granted by Lory Reyers. Photography by Chuck Fadely. Subsequently edited in Reader's Digest, http://www.rd.com, p. 80-84, May 1999. © 1998 Miami Herald.
When the test results came back, she couldn't bear to tell her husband. Second marriage for both. First child together. This would be the happy family, she had told herself. Here they were: Two people with grown children from their first marriages, starting all over. Newlyweds with wisdom. Middle-aged lovers. With a newborn. A newborn with disturbing test results. Delia Carricaburu kept looking at the report as she drove home from the pediatrician's office with her month-old baby. The 23 pairs of chromosomes looked like ink spills little smudges and dots lined up in pairs, except for one set. Chromosome 21 had three dots instead of two. Three dots meant Down syndrome. Developmentally delayed. Telltale physical characteristics. Three dots meant . . . well, Delia didn't want to think about it. More than anything else, she wanted to forget what the pediatrician told her when he handed her the test results: Agustin will probably not speak so anyone can understand him. He will probably never read or write. He may be able to feed and dress himself. But he will never be able to work or live on his own.
That was a decade ago. Now, when she watches her son beaming, in his overalls and engineer's cap, driving the amazing shiny machine he built with his father, she can hardly believe she once was so upset. But 10 years ago, she was not where she is now. Then, Delia desperately pleaded with God: "Take the third chromosome away, make him normal."
|Motor Skills Agustin and his father with the tractor they built, based on a picture he saw in a book.|
That night the night she got the test results she wrote a note on a scrap of paper: "Precious bundle, guardian of my secret, you and I are going to show the world that a tiny chromosome will not control us." Then, she said nothing about Agustin's condition.
Her mother asked her why the baby was so floppy. A touch of flu, Delia said. Her daughter asked her why his eyes were shaped differently from his four older siblings'. A Chinese ancestor, Delia said. Her husband, Carlos, asked her why she seemed so down. Postpartum blues, she told him. They would pass.
When Agustin was a few months old, Carlos came across the test results in a drawer. He looked at the paper quickly, not knowing what 47 chromosomes meant. He figured since his wife hadn't mentioned the test, it must not mean much, and he didn't ask her about it. Agustin was 20 months old before he learned what was wrong.
Delia says she never totally understood why she hid their child's condition from her husband. In part, she kept hoping some miracle would occur. Maybe her desire for her son to be healthy was so powerful it could alter the reality of Down syndrome.
"If I'd made myself face the truth, I would have fallen apart," she says. "I simply went into a very strong form of denial that lasted 20 months."
But there were daily reminders of Agustin's condition: The baby couldn't breast-feed because his mouth was too weak. He was slow to roll over and sit up.
When she went to the grocery with Agustin, she handed him fruits and vegetables. She urged him to grip them, hoping this would strengthen his muscles. "Feel the orange," she would say. "It is rough. Taste it. It is sweet."
"Learn," she would whisper to her child. "Be normal, please."
Delia got pregnant again when Agustin was a year old. Now she was keeping two secrets from her husband: Agustin's condition and her fear that the new baby would have it, too. After the cesarean, in her drugged state, she didn't even know if the baby was a boy or a girl. But there was one question far more urgent. "Is it Down's?" she asked the doctor. No, he answered. Delia passed out.
Carlos took care of Agustin while Delia recuperated in the hospital. Now he realized there was something wrong with his son. He thought Agustin should be saying something by 20 months. Mommy, Papi, kitty. Something.
He remembered the test results he had seen; he no longer thought they were meaningless. When Delia came home from the hospital with Beatriz, the new baby, Carlos confronted her.
Delia wanted to take her husband in her arms, weep, beg his forgiveness for not telling him. But she didn't give in to the impulse. Instead, she took a deep breath and said calmly: "Agustin is developmentally delayed."
She told Carlos what the geneticist had told her: "He'll probably do everything any other child does. It'll just take him a little longer."
Delia told Carlos that their boy had a condition called Down syndrome, hoping Carlos would not know the term. But Carlos knew immediately: "Our son is a Mongoloid?" he gasped.
"That's when I went into denial," says Carlos.
Delia remembers Carlos playing with Agustin one night soon after: "His eyes are round," the father said. "I think he's OK."
Carlos says that at first he was afraid that he'd never be able to get close to Agustin, that his paternal love would be blocked by a mysterious wall that would keep him from ever connecting with the child.
Delia was afraid Carlos would be so disappointed and worried about the child that he would become depressed. For a few months, he seemed distant and preoccupied. He didn't speak about Agustin's condition, but it was clear he never thought about anything else. One night, when Delia was reading aloud to him, he interrupted her and said: "I was slow as a child."
Another time he announced: "I knew a man with Down syndrome in Buenos Aires who owned and operated a news stall. He got rich."
Another time, at the dinner table, Carlos said out of the blue: "We should eat pizza. It strengthens jaw muscles."
When Agustin was almost 3, he was saying only a few words. Delia and Carlos heard that the University of Miami had a program to study and work with kids who had speech problems. Agustin had to undergo a series of tests before being admitted. In one, the tester put pennies on a table and told the child to pick them up. Agustin fumbled, unable to grasp the coins in his pudgy little fingers, so he pushed them over the edge of the table into his other hand and gleefully held them up. Another tester showed Agustin a picture of flowers in a vase. "Find the other vase of flowers," he said, pointing to another page with several images. Agustin walked over to a nearby table, picked up a vase with flowers in it, and put it down next to the picture.
Carlos was exultant. "Our child is thinking all of the time," he told Delia excitedly.
When Agustin was born, Delia was 41. Being older than 40 put Delia in a high-risk group for having a Down's child: a 1-in-110 chance, compared with a 1-in-1,000 chance for women younger than 35. Between 650 and 1,000 mothers give birth to a baby with Down syndrome every year. The genetic defect that causes Down syndrome occurs at the moment of conception, when the egg or, infrequently, the sperm fails to separate at the 21st chromosome, the shortest of the chromosomes, and contributes an extra chromosome to the zygote. The redundant chromosome causes each cell in the fetus to have excessive protein, which in turn produces the syndrome's symptoms.
All Down's babies have some level of mental retardation, as well as certain physical characteristics. Agustin was lucky. He had no serious health problems. Nor did he have the common crooked little finger or the fold in the neck. In fact, to Delia, he appeared to be perfectly healthy. But not long after his birth, the pediatrician noted the slant of his eyes and the lack of muscle tone, and suggested he be tested for Down's.
Delia went to the pediatrician's office with her 1-month-old son to get the test results. In the waiting room next to her sat a mother with a teenage boy who had Down syndrome. Delia says she couldn't even bear to look at them.
When Delia left the consulting room, the woman and the teenager were still in the waiting room. "How do you do it?" Delia screamed at her, then ran out of the office. The woman, Candy Pinto, says when she left the doctor's office, Delia was still standing outside, clutching her baby and leaning against the building, with tears running down her face. Pinto wrote her name and phone number on a scrap of paper and handed it to Delia, who called a few weeks later. She needed someone to talk to. Delia rambled, talking about her anguish and anxiety. But she also said she believed Agustin's condition would go away.
"I told her to pray," says Pinto. "I knew she needed some time to accept the truth. Most of us do."
The development of children with Down syndrome varies dramatically, and there is no way to tell at birth how a Down's child will progress.
After Agustin amazed his father with the vase of flowers at the university, a researcher called Carlos in: Agustin was on the verge of an explosion in language development. He was unusually bright for a Down syndrome child. The most important factor would be how much his parents and teachers worked with him.
Suddenly, the wall between Agustin and Carlos dissolved. Now the father believed he could reach his son. And he knew exactly how he would do it: He would teach Agustin in the same way that he had been taught by his own father in Argentina.
Carlos' father had been incredibly resourceful. He built a blacksmith's forge and could make a machine part out of an odd piece or two, and a motor from a conglomeration of remolded parts. Carlos and his father made a go-cart out of wood and metal scraps when Carlos was 10. They made a boat motor out of found objects. As a teenager, Carlos built a car. Later he became a machinist, rebuilding everything from lawn mowers to ship motors. He made a decent living working with his hands just as his father had done. Just as his son would do, Carlos vowed.
Before Agustin could say "Big Bird," he could nail boards together. Before he could say "mas jugo" [more juice], he could take the pedals off his mother's bike with a wrench and fix his teenage sister's Rollerblades. Carlos' plan was to get Agustin to do increasingly difficult things with his hands and mind. Maybe they would eventually build a boat motor together maybe something much more spectacular.
At the university, Agustin was learning to speak more clearly. By 5, he was fluent in English and Spanish. A test showed him to have an IQ in the low 70s mild retardation. But specialists who work with developmentally delayed children say that what a child is able to do is more dependent on being taught and loved than on any test score.
The Carricaburus enrolled Agustin in the Learning Experience, a private school. It cost more money than the Carricaburus could afford, but Agustin got a scholarship and Delia got a job as a social worker to help make up the rest.
"If any kid shows what supportive parents and a creative environment can do, it's Agustin Carricaburu," says Shannon Campbell, executive director of the Learning Experience. Agustin could read and write by 6. He could add and subtract. He could shoot baskets and swim. But before he turned 8, he had to drop out of the Learning Experience because his family could no longer afford even the partial fees.
When Agustin went to public school and enrolled in a class for "the educable mentally handicapped," Delia and Carlos noted a disturbing regression. Agustin couldn't sleep at night. He got lost going to class and the cafeteria and had trouble keeping up in physical education. He picked up a vocabulary of obscenities, which he proudly tried out at home.
With Agustin sliding backward, Carlos decided to accelerate his own teaching program. The boy loved to look at cranes in books, so after school, father and son would drive around town looking at cranes. They took pads and sketched what they saw, discussing the parts. Agustin drew the prototype for the crane they would build. He would be able to sit on it and roll it around the house. "For picking up my toys," he told his father.
The base and shaft of the crane were made from metal shelf frames, which Agustin bolted together. The pulleys were from jar lids; the wheels from a discarded wagon. An old lunch box served as a compartment for holding snacks. The seat was a child's plastic chair with the legs cut off. Agustin thought of using the jar lids, lunch box and chair himself. He helped his dad connect them.
When the crane was finished, he rolled around the apartment on it, hooking his and his little sister's toys and dropping them in their toy boxes.
"We were ready to tackle something really difficult after this," says Carlos.
Agustin spotted the book about tractors in the bookstore turn-of-the-century tractors with steam engines. He stopped at the picture of a 1906 tractor: It was shiny red, green and yellow with silver studs, copper pipes and brass trim. It was loaded with wheels, cogs and chains. And, best of all, a smiling farmer was driving it.
"I want that to be me," Agustin told his dad.
It had occurred to Carlos that his son would probably never drive, but he thought it would help his son's self-esteem to be behind the wheel.
Carlos knew how difficult it would be to build a turn-of-the-century tractor with a child who had been declared "developmentally delayed." Nevertheless, he told his wife, he felt driven to try.
Where are you planning on doing this? Delia asked. In our living room?
But finding a place to work was only the beginning. There was the cost. And Carlos asked Delia how she would feel about his taking time off from work so he could concentrate on building the tractor with his son.
Delia was skeptical. And worried. This would mean more work for her, and less money for the family. Why should she agree to such a plan, she wanted to know.
"Because," Carlos told her, "no matter what happens, Agustin will have had this."
The tractor was nearly finished when an acquaintance showed Delia the poem "Ride a Wild Horse," by Hannah Kahn, who died in 1987. Kahn was the mother of Vivian, a child with Down syndrome. Vivian Kahn, in her 50s, now lives in Seattle with her brother and his family and is an office assistant at the county courthouse. She can still recite her mother's most anthologized poem:
Ride a wild horse
That was it, Delia said. The poem perfectly expressed why she decided to agree to her husband's crazy proposal: "I believe everyone should have a chance to ride a wild horse to make one impossible dream come true," she says. "I had to go along."
with purple wings
striped yellow and black
except his head
Which must be red.
Ride a wild horse
against the sky
hold tight to his wings
Before you die
whatever else you leave undone
once ride a wild horse
into the sun.
Before they set to work, father and son pored over the pictures in the tractor book. They decided upon a 1906 Case thresher.
Carlos spent weeks trying to figure out how to build the transmission gearing, the counter-shaft pinions, the flywheel and friction clutch. Their tractor wouldn't run on steam that would be too dangerous but with a 5-horsepower Briggs & Stratton motor. Nor would it thresh. And it would be scaled down in size so Agustin could drive it. Otherwise, it would be just like the 1906 Case, with all parts in view for easy repair.
"We wanted something I could do and undo," says Agustin. "Something I could control."
Delia sold her piano and sofa to help finance the project. She put a sign in her office: "When life gives you scraps, make quilts."
Carlos hung three photos in their apartment: one of Albert Einstein because "he was learning disabled but so smart"; one of the Three Stooges because "no matter how ridiculous something seems, if it brings joy it's worth it"; and one of the tractor they would copy.
Carlos worked on the tractor during the week, and Agustin worked with him at the warehouse they'd found every Saturday and Sunday. They got up at daybreak, put on overalls, stuffed rags in their pockets, grabbed their toolboxes and lunch boxes and took off until dark. Sometimes they went to scrap-iron shops, hardware stores and junkyards, looking for parts.
"We were very creative," says Agustin.
They made the crankshaft from a print roller, the braces from the propeller weights that balance a ship's radar system. The wheel hubs came from the discarded rotor of a dough mixer.
"I wanted Agustin to get into the habit of seeing something and thinking what else it could be," says Carlos. "If he could believe a print roller could be a crankshaft, then he could believe he could be a skilled mechanic."
Agustin put in bolts and tightened them. He oiled and painted. He picked out parts. He got so he could wander around Home Depot and come up with something surprisingly close to what they needed. A couple of times at home after school, Delia found Agustin under her car with a flashlight, trying to figure out how the parts connected.
Father and son took about six months to complete the tractor. On a Friday afternoon as they were close to the end, I visited them at their apartment.
"You've come to hear about our tractor," said Beatriz.
"It is not our tractor, Betty," said Agustin, then 9. "It is mine, and it is none of your business."
At his mother's behest, Agustin left the apartment to buy sodas from the machine downstairs. In a few minutes the phone rang. The manager of their apartment building told Delia that Agustin was in his office complaining that the soda machine didn't give him the right change. He's right, said the manager.
Indeed. Agustin has far exceeded the Carricaburus' expectations. Delia calls him "son," but says she is also thinking of the word "sun": To her, he is a shining light. Carlos says their son is typical for his age "smart in some ways, not so smart in others."
"I want to impart as much as I can to him about working and thinking," says Carlos. "I want him to be an independent adult, in case I'm not around."
Recently, Delia found out Agustin has a thyroid problem common to kids with Down syndrome. He will take a pill every day to regulate it. She hopes this will not be the first of many health problems. She says she tries not to let the future get in the way of the present, but that she and Carlos can't help worrying.
"Carlos and I are in our 50s," she says. "We ask ourselves how much longer we'll be around."
But on a Sunday shortly after I visited their apartment, the Carricaburus were not thinking about the future. They had planned a big outing. They would go to lunch at Denny's, then go to the warehouse for an inaugural tractor ride. Agustin, who had rehearsed with his dad, would be the first driver.
At Denny's, Agustin ate a cheeseburger and circled hidden words in a block of letters in an activity book. He explained his choice of crayons: "I use the color that's the color of the word I'm circling. Green for the alligator. Brown for the bear. Red for the parrot."
When the family arrived at the warehouse, Carlos lifted the metal garage door and wheeled the tractor out into the parking lot. Delia gasped. Betty and Stephanie, his older sister, clapped. It was nearly standard size, and more beautiful than the tractor in the book: shiny red, green and yellow with silver studs, copper pipes and brass trim. It was loaded with belts, cogs and chains and had windows, storage compartments and an American flag on top. Out in the warehouse parking lot, it looked like an amazing exotic bird, a museum showpiece, a stained-glass window. A wild horse in the sun.
Carlos started the motor, and kids from the neighborhood gathered in the parking lot to watch: "Where did that tractor come from?" yelled a 14-year-old boy on in-line skates.
"My dad and I made it," Agustin yelled over the sound of the motor. "I'm the driver."
"Awesome," said the kid.
Agustin climbed aboard. He put one hand on the steering wheel and the other in the window, just like his father driving the family car. The child put the vehicle in gear, and it lurched forward.
"Turn! Turn!" yelled his father. "Slow down!" The boy turned and increased the speed. He was staring straight ahead with great intensity. The tractor squeaked and groaned, chugging along the pavement with all of the power and perseverance that went into its making. Around the parking lot Agustin went. Again and again. Faster and faster. His sisters cheered. The neighborhood kids raced behind him on skates.
"It's beautiful," Delia whispered.
"We did it!" Carlos shouted.
Agustin did not hear his father. He was too busy driving. He was too busy doing what so few people with Down syndrome ever get to do being in control.
"Watch how the clutch works," yelled Agustin, squeezing a handle and pointing to a series of pressure points in the system.
"The hands are the instruments of man's intelligence" Maria Montessori
Emmanuel no longer sleeps like a porcelain baby Jesus, arms outstretched, bestowing a perpetual blessing with his little hands, to those without Down syndrome.
When my son makes the sign of the cross, the Holy Spirit ends up in the general vicinity of Emmanuel's right armpit, but we hope it will migrate towards the heart and take residence there.
"Listen to the whistle!" he shouted, pulling the chain. It blasted out like the sound of a faraway train like the sound of a hopeful journey through a dark night.
Down Syndrome: Research & Knowledge for Care in the Future Conference, February 24-26, 2000. Wyndham Harbour Island Hotel, (813) 229-5000, Tampa, FL. Conference brochure and detailed information available at: <no longer available>.