September 1998 Issue

The second annual Riverbend DSPSG picnic will be held on Saturday, October 17 at 11:00 a.m. We will picnic at the Ice Rink pavilion at the Edwardsville Township Park on Center Grove Road. This year we're going to try a "BYOP - bring your own" picnic. Hope to see your family!

STARnet Illinois Region IV Workshops
November 13-14. Brain Development Conference. Collinsville Holiday Inn. In collaboration with Children's Home & Aid Society of Illinois. Contact: Kim Hunt, 452-8900, ext. 123.

Regional Events
October 24, 8:00 a.m. to 4:30 p.m. National Association for Down Syndrome (NADS) 1998 Conference on Down Syndrome, Focusing on the Possibilities. Fee: $35. The Congress Hotel, 520 South Michigan Avenue, Chicago, IL 60605. Registration deadline: October 14. Contact: NADS; P.O. Box 454; Oak Brook, IL 60522; (630) 325-9112;

October 25, 1:00 p.m. Greater St. Louis Down Syndrome Association 4th Annual Buddy Walk 98 to raise awareness and promote advocacy for all people with Down syndrome. Queeny Park - St. Louis County, 1.5 mile loop walk. Refreshments and picnic following the walk. $6.00 per walker, includes T-shirt. Pre-registration deadline: October 17. Contact DSA - Buddy Walk 98; 14974 Lake Manor Cr.; Chesterfield, MO 63017-7708

October 26. St. Louis, MO. Essential Oral-Motor Techniques by Charlotte A. Boshart, M.A., CCC-SLP. Speech Dynamics, Inc. 27349 Jefferson Ave. #205, Temecula, CA 92590, 1 (800) 337-9049, Fax: (909) 695-4903.
URL:, E-mail: Cost: $89.00
8:30 a.m. - 10:00 a.m. The Six Fundamental Oral-Motor Concepts and their Analysis: Development, Oral-Facial Resting Postures, Neuromuscular Components, Sensitivity & Proprioception, Stabilization, differentiation.
10:15 a.m. - 12:00 noon. The /r/ Analysis, The /r/ Probe, /r/ Remediation: Achieving resting postures and lateral margin stabilization, laying the oral-motor bases, how to elicit /r/, solidification, and carryover strategies.
12:00 noon - 1:00 p.m. Lunch is on your own.
1:00 p.m. - 2:15 p.m. The /s/ Analysis and Remediation: Approaching the frontal /s/ and the lateral /s/ from the same oral-motor base; techniques; carryover strategies.
2:30 p.m. - 4:00 p.m. Oral-Motor and Multiple Articulation.: Stabilization, jaw-work, going back to mouthing, how to heighten proprioception. Videos.

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:

The Down Syndrome Association of Greater St. Louis Monthly Parent Play Group meets every second Thursday of each month at 211 North Lindbergh from 9:30 a.m. to 11:30 a.m. For more information call Karen Voda at (314) 645-8939.

Playful Harmonies, unique programs for young minds and bodies at Belleville and O'Fallon. Program Director: Mary Burch. Itty Bitty Boogie: 6-12 months; Baby Boogie: 12-24 months; Tuneful Tots: 2 year olds; Musical Munchkins: 3 year olds; Junior Jammers: 4 year olds; Kreative Pre-K's 4-5 year olds.

110 North High Street, Suite #14
Belleville, IL 62220
Fax: 236-1108
A Social and Recreational Program for Young Adults with Disabilities. Upcoming leisure activities and social events:
September 18, 6:00 - 8:00 p.m.
Welcome Party. Free
September 25, 6:00 - 8:00 p.m.
Bowling. $5.00
October 2, 6:00 - 8:00 p.m.
Movie and Sundae Night. Free
For more information contact Christy Hendrix, Director of Health and Education or Justin Semerad, Inter-Action Program Coordinator at the:
YWCA of Alton
304 East Third Street
Alton, IL 62002
465-7774; Fax: 465-7782
For information regarding the Inter-Action program at the Edwardsville YWCA, contact Karen Ulloa at 656-0436.
blank.gif News Clipping
What It Is Like to Have a Disability by Lydia Orso. Tiger Times, Edwardsville High School, February 28, 1995. Reprinted with the permission of the author.

I would like to tell you about my disability which is called Down syndrome. It is something that I was born with, and it means that I have an extra chromosome in all of my cells. Sometimes it is difficult for me to learn, speak, and pronounce words. When I started grade school, I needed extra help to understand better.

There are many things that are different about people who have a disability, but usually there are more things that are like everyone else than there are things that are different. One thing that is like everyone else is our feelings. I have the same feelings as everyone else has. Sometimes I don't feel comfortable saving "I don't understand." I don't like saying the words, "Down syndrome" because I want to be like everyone else. I don't want to be different from everyone else. Sometimes I don't understand jokes that other kids make. I need other people to explain things to me. in my old school, I had student helpers and an aides to help me. I miss not having them around because in some of my classes I have trouble understanding the subject.

Since I am the only one at EHS who has Down syndrome. I feel weird, it's really hard to make friends. Sometimes I feel that I am left out. I have trouble expressing myself because it is hard to find the right words, and I get embarrassed.

One of the reasons I wanted to write this article is that thought some of you might be afraid of me because I am different from other people and have a disability. I hope now you will understand me better.

And More News Clippings blank.gif Those Special Kids by Barbara Curtis, e-mail: The War Cry, May 2, 1998, p. 14-5. © 1996 Barbara Curtis. Reprinted with permission of the author.

"I don't know what's gotten into her today!" Maddie's mother said, exasperated and embarrassed. Her normally confident 3-year-old was resisting all invitations to join the pre-school circle. Instead Maddie stood ill at case, thumb in mouth, gawking at a group of slightly different peers- children with "special needs."
How odd! her mother thought. Especially considering that one of the children was Maddie's 4-year-old brother. Jonathan had Down syndrome, and until recently he and Madeleine had been like twins. Even as she began to pass him by developmentally, they had remained best friends. That's why their mom had let Maddie tag along for Jonny's first field trip with his special ed class. Now she wondered if she had made a mistake.
"Kind of makes you wonder who has the disability," I said, turning to another parent. A remark I could get away with because Maddie is my daughter. And Jonny is my son.
I never wondered how it would feel to be a parent of whom more is required because I never thought I'd be one. Jonathan's birth sent me into a dimension I hardly knew existed. It's not that my heart had been hard toward differently-abled children-it's more that I had been oblivious.
I use the words "differently-abled" not because it's trendy or politically correct-parents of special kids don't pay much attention to those things. I choose it because it best describes the children I met when God-through my special son-unlocked a door few are privileged to find.
I opened that door when I took nine-month-old Jonathan to his first Easter Seals group. There we sat in a circle with other mother/infant pairs singing, clapping and playing with bells and bubbles and balls. Early Intervention they call it. Quite a blessing when you consider that not so long ago such children's lives were wasted in institutions. No one had yet figured out that with a little extra help and love they could become the special people God meant them to be.
But who was I to talk? I had never thought of the disabled as special. Maybe that's why my heart felt so full as I held my special boy, singing "The Wheels on the Bus" and gazing around our first circle.
Some of what I saw shocked me. There was Christopher, whose head was severely misshapen-twice the normal size, startlingly asymmetrical, with only one eye. Anna looked at one year old like a twelve pound, very wrinkled old woman.

I use the words "differently-abled" not because it's trendy or politically correct. I choose it because it best describes the children ...

And Gabriella, who was blind. And Sam and Jenny who both had cerebral palsy, but to different degrees. Some children, like Jonathan, looked almost normal, but some were like no one I had ever seen. Their mothers shared a unique beauty produced when life mixes grief with joy, fragility with strength-then covers it all with tenderness and fatigue. Like mine, their lives had been forever changed by the birth of the child that brought them here. All were in some stage of coping. We learned more about each other when we left for the mothers' group while others worked with our children. Christopher's mom cried. Her husband was becoming more and more withdrawn. She knew the statistics: 80 percent of marriages end in divorce following the birth of a disabled child. But there was a more immediate problem: she couldn't bear to take the baby anywhere, to see the horror in people's eyes when they saw her son. Anna's mom felt the same way. She struggled with whether or not to get pregnant again. Genetic counselors were not sure whether Anna's disorder was chromosomal- besides her appearance, Anna had been plagued by many operations. Would another child cause as much heartache? Jenny's mom dealt with guilt, and she wondered who to sue. Her home birth had gone awry and because of delays in getting to the hospital, her daughter would be different all her life from what she might have been. For two years we shared it all, supporting each other through our children's operations (most dramatic: Christopher's head reconstruction and plastic surgery), subsequent pregnancies (resulting in three healthy babies) and stresses in our marriages. We rejoiced and mourned together. For two years, though I was the only Christian in the group, I had a sanctuary where I found more love and compassion-a more tangible picture of Jesus-than I found in the Church. Jonathan is almost five now, Maddie's four, and Tripp and I have added two more to our family. Jesse and Daniel are two boys with Down syndrome we adopted over the past 18 months. This brings our total children to eleven. But who's counting? When people are surprised that with our large family we would take on two more with special needs, I smile. "When we found out what a treasure we had in Jonny, we decided we wanted more like him," I say. This is not an easy concept for people to grasp. One great sadness of being a parent to differently-abled children is the inevitable isolation. blank.gif Their mothers shared a unique beauty produced when life mixes grief with joy, fragility with strength-then covers it all with tenderness and fatigue.

"We've had more negative reaction from the church than from the secular world." blank.gif Saddest of all is that in some areas the Christian community lags years behind the secular in accepting and supporting children with special needs. While inclusion programs are mandated in public schools, most Christian schools refuse to provide for the education of children like mine. So while for years public school kids have been spending classroom time getting to know and feel comfortable with differently-abled kids, Christian kids have not been given this opportunity. Neither have parents. One Christian mom, Becky Wold, after two decades of raising children with disabilities, states flatly, "We've had more negative reaction from the church than from the secular world." She offers these explanations: Judgmentalism: "Either they tell me the Lord loves me so much He's given me this burden to carry, or they secretly suspect that my husband and I must have done something wrong to have children with disabilities." Blindness: "Some feel that where they see no healing there is a lack of faith. Often healing comes in a different way. It hasn't been physical, but emotional, spiritual." Fear: "People are afraid to ask questions, afraid to get involved, because then they'd have to do something." The contrast between the isolation a special parent feels within the church and the warmth and encouragement available from support people outside can throw a Christian for a loop. As I said, it's been a source of sadness for me. One mother told me this story: "Baby dedications arc always my favorites. But this Sunday I ran out of the Church in tears. Why? Because one proud pair of parents shared this praise report: four months before, prenatal tests had indicated their baby might have Down syndrome. They described their anxiety in great detail, and their joy at giving birth to a 'perfect' baby. The applause which followed felt like knives piercing my heart. After five years of watching my son Jacob grow and flourish, my 'brothers' and 'sisters' still thought of him as less than perfect." "What if Jacob were 13 years old and heard that message? How did his brothers and sisters, who love him dearly, feel to know that their church family was relieved not to receive someone like their brother? "I went to see my pastor, to try to educate him that Down syndrome was not an accident, but a genetic pattern. As in Psalm 139:13-14, Jacob was made just the way God wanted him."

My pastor looked at me as though I had two heads. I realized he'd never really learned anything about Jacob or about Down syndrome. He didn't care enough. We left that church shortly after. I felt we'd never belong." I understand this mother's feelings. I also understand the pastor. God used Jonathan to broaden my perspective and enlarge my heart. God showed me how little He cares about our intelligence and physical appearance, how much more He cares about how we live and whom we serve. Looking back, I know that it must have been me He saw as disabled.

God's Gift—A Down's Syndrome Daughter by Erin Emery. Colorado Springs Gazette Telegraph, Copyright 1997.

A stunned quiet filled the delivery room. No one spoke, not even the nurse. "Let me see her," Lyndale Yazel said to her husband, Bill. Bill had Ellyn cradled in his arms and went to Lyndale's side so she could see her baby, who had upwardly slanted eyes. "Oh, look, we have a China doll," Lyndale said. It was 3 a.m., May 21, 1975. Later that morning, a pediatrician walked in, rigid as a robot, and stood at the end of her bed. "Do you know what Down's syndrome is?" he asked. "Yes," she said. "Do you have any questions?" Dumbfounded, Lyndale had none. The next day, the same doctor told Lyndale he did not believe Ellyn's large and small intestine were connected-a malady commonly found in Down's children. "Your child is failing," he said. "We think she's going to die. We'd like to withhold feeding and surgery based on the quality of life that we would be prolonging." It was his way of giving Lyndale an out-a chance to rid herself of the child. She wanted none of it. "I don't know about Down's syndrome, but I'll learn about it," she said. "And you better do everything possible to save my baby. "Do you hear me?" In the following days none of the doctors or nurses came near Lyndale. At night, in a ward with five other mothers, Lyndale sobbed quietly into her pillow, trying not to disturb the joyfulness in the other mothers, who had healthy babies. She prayed quietly. "Dear God, let me be good enough. Can I teach her to learn?" Institutionalize her. That's what the medical experts in the California hospital told Lyndale to do. They said to expect nothing from Ellyn. But Lyndale, who at 25 had just graduated from San Jose State University with a degree in education, was hellbent that she would do more than love this child. She would teach her. Her Ellyn would one day be able to hold a job and make a difference. What Lyndale never imagined was this: One day, Ellyn would become her

blank.gif "I don't know about Down's syndrome, but I'll learn about it ..."

It wasn't long before testing showed that Ellyn and her special classmates were doing as well as any non-disabled child. blank.gif caretaker. Lyndale, of course, could foresee none of this the day she brought Ellyn home from the hospital. All she knew was that an institution would never be part of her baby's life. It wasn't long before Lyndale realized no one could tell her what could make a child with Down's syndrome grow and learn. Down's syndrome occurs in one of every 1,000 births. It is caused by an abnormality in the number of chromosomes, the tiny parts of a cell that contain minute structures called genes. It is characterized by a low IQ and telltale features: upwardly slanted eyes, a flat nose and short, stubby hands. With no road map to follow, Lyndale set off on a path of her own. She believed these children were not born retarded -- they became retarded because they did not receive proper nutrition and their minds weren't stimulated. Before Ellyn could even sit up, Lyndale was giving her vitamin supplements and stimulating her senses. Three mornings a week, Lyndale was joined by other mothers and their high-risk babies in her husband's karate studio. She brought in tubs of rice and whipped cream with food coloring-anything to tweak the babies' sense of touch, smell, sight. She taught the babies how to reach for objects, track with their eyes, become aware of their hands. Lyndale was trying to strengthen their bodies and their minds. It wasn't long before testing showed that Ellyn and her special classmates were doing as well as any non-disabled child. Back then, in 1975, it was believed that Down's syndrome children could achieve an IQ of 30 to 50. Ellyn's IQ soared to 100. At 14 months, Ellyn was walking and functioning at the level of a 2-year-old. "Aha," Lyndale said. "We've got something here." Yet by the time Ellyn reached 4 years old, Down's syndrome had caught up with her. Ellyn suffered one illness after another. She seemed to be losing ground. Her mouth hung open; saliva dribbled down her chin. She had a sleepy look to her-a profound Down's look. Doctors told Lyndale that Ellyn had plateaued physically and mentally. Lyndale wasn't going to accept that. She was searching for answers when she heard a talk show guest mention Dr. Franz Schmid, a German physician and an authority on Down's syndrome. On Mother's Day in 1980, Bill hung a gold cross around Lyndale's neck, kissed her and Ellyn goodbye, and put them on an airplane for Germany. On the eve of Ellyn's fifth birthday, Schmid interviewed Ellyn and then gave her a shot -- an implant of fetal lamb cells. It was a proven European approach designed to stimulate the brain. Within hours, the light came back to Ellyn's eyes. She was active and energetic. "Mommy, I feel all better now," she said. When she returned from Europe, Ellyn

started kindergarten. At the time, she was reading simple three-letter words and doing as well as many of her classmates. Lyndale enrolled her daughter without telling school officials about the Down's syndrome. Within days, she got a call from the nurse. "Mrs. Yazel, do you know your child is a mongoloid?" The La Prieta School District outside San Francisco didn't want anything to do with mongoloids. Lyndale said it shouldn't make any difference and that her daughter was entitled to an education, just like every other child as long as she could keep up. Ellyn stayed in school, but it wasn't easy. One day, a mother called Lyndale and told her that during recess, older kids would circle around and take turns spitting at Ellyn. "But Ely, she just looked at them with such love and thought they were playing a game. She's innocent and trusting," Lyndale said. One day, Ellyn came home from school and said, "Mommy, they're calling me 'MR.' What's 'MR'?" Lyndale didn't blink. "It's mentally remarkable, dear. You are mentally remarkable." By the fourth and fifth grades, Ellyn was reading books and comprehending them without prompting from her mother. Her speech was clear, except when she was overly enthusiastic. She was taking jazz dancing and organ lessons. During the next few years, Ellyn stayed in school. The only difference between Ellyn and her classmates were her grades: Ellyn was given "pass" or "fail" while the other children received letter grades. By age 12, Ellyn had a sister: Katelyn Lyndale Yazel, born a few days before Christmas in 1987. Life seemed joyful. Then 22 months later, the Loma Prieta earthquake-the big one-hit the Bay Area community, destroying homes and lives. Lyndale was on the telephone with a pediatrician when the line went dead. The house flew seven feet into the air, tossing Lyndale across the floor like a rag doll. She landed on her head, against the kitchen cupboards. It was an injury that would later put Ellyn to the test. When the world stopped shaking, Lyndale heard screaming from the other room. Ellyn and Katelyn! With a gash in her knee and a twisted neck, Lyndale crawled over the rubble to get to her daughters, the youngest only 22 months. When Lyndale reached them, the children were fine. Ellyn, now 14, had used her body as a shield to cover Katelyn. Her quick reaction might have saved the child's life. When a dear friend suggested the Yazels move to Colorado Springs, Lyndale jumped at the chance for a fresh start. In November 1992, Lyndale made the move with Ellyn, now 17; Kate, 4, and Brit, 15 months. Bill stayed behind until he could sell the house. Nearly a year passed before he found an administrative job at a school district. Ellyn enrolled in day adult education classes at Helen Hunt Elementary School to prepare for her GED test. Eventually, the child who was never blank.gif Ellyn, now 14, had used her body as a shield to cover Katelyn. Her quick reaction might have saved the child's life

This child has turned out to be such a gift. blank.gif expected to do anything had earned a diploma from Palmer High School. When the family set out to find a home, it was Ellyn who helped them. Through the years, she had been saving $5 and $10 here and there. Birthday and Christmas presents that added up to $5,000 in savings. The family used it as a non-refundable deposit on a house. Then Ellyn set out to make a living. She trained as a clerical aide at Colorado Springs School District 11, learning how to file, make copies, alphabetize and run errands. She also had a part-time job as a CPR-certified nursery worker for First Presbyterian Church. In late August 1996, she got an interview at the city of Colorado Springs. Was she interested in a job as a file clerk at Colorado Springs city hall? The pay was $6.45 an hour-to start. This called for a celebration. Lunch at Marigolds. Mother and daughter sat at the bar, laughing. Ellyn, now 21, ordered the seafood fettuccine and a strawberry daiquiri. They got two straws and sipped on the luscious drink while Lyndale talked to Ellyn about the significance of her job opportunity. "Honey, you can do this," Lyndale told her. Ellyn believed her. Her mother was always right. She could do this. As Ellyn started her job, juggling her new responsibilities, she fretted about her mother. Lyndale needed surgery from the neck injury inflicted six years ago in the earthquake. The injury had worsened from periodic pain to near immobility. What Lyndale thought was arthritis was actually a serious spinal cord injury. Doctors discovered she had three herniated disks pressing against her spinal cord. She needed a rare and dangerous surgery-one she might not live to tell about. Doctors would essentially rebuild her neck, with bone from her hip and a 3-inch titanium steel plate. Lyndale spent six days in Memorial Hospital in Colorado Springs before she went to a rehabilitation hospital. Doctors wanted her to stay there for two weeks, but her health insurance would pay for only a week. Back at home, Lyndale only had one person to help her: Ellyn. The funding for her city hall job dried up and there was only enough money for one day's work a week. Bill was working full time. So this supposedly unteachable child became her mother's physical therapist, her occupational therapist and her practical nurse. Bedridden for a month, Ellyn did it all for Lyndale, from giving her many medications to wheeling her to the bathroom and the shower. She combed her mother's hair and applied her rouge and lipstick. Ellyn was confident, calm, gentle and soft-spoken in her care taking. Lyndale has recovered enough now to care for herself. She marvels at her daughter's accomplishments-that every unorthodox step she took with Ellyn turned out-for her at least-to be exactly the right move. This child has turned out to be such a gift.

Down Syndrome Newsletter Articles
A Multisensory Program for Teaching Reading. Reviewed by Gloria Bishop, E-mail:

This workshop was presented by Laura Felzer, Los Angeles City Schools, Perez Special Education Center, (213) 269-0681, E-mail: at the 26th Annual NDSC Convention, August 7-9, 1998 in Dallas, Texas and described a Signing Based Multisensory Reading and showed a video where six Hispanic children with Down syndrome are being taught as a group. A flash card with the word "horse" is shown and the children read the word and simultaneously sign the word "horse"; to reinforce, a play horse is shown. Another technique presented by the video is where 6 flash cards of the word "horse" and 6 flash cards of the word "A" are placed on the floor and each child takes turns matching, reading and signing the flash cards. This reading program has been successful to teach children with Down syndrome to read by using a multisensory approach: sight words, vocalization, sign language and objects. Daily reviews are essential, e.g., placing each flash card in order: I-see-a-horse, and matching identical sentences. Each child is tested individually by reading several sentences, as the read, they also signed each word. At the end of each sentence the child picked up the objects pertaining to the sentence, e.g., picking up the little red toy car when they read, "The car is red". After the children have learned several sight words and simple sentences, they are taught phonemic awareness, phonics, printing and spelling.
The main principles of the Multisensory Reading Program outlined in the booklet A Multisensory Reading Program That Really Works, are: a) Sight words and simple sentences are taught before

blank.gif phonics, and b) Children learn printed words and phonetic sounds using a multisensory approach that includes signing. The advantages of signing in the teaching of reading are: a) Sign illustrate the meanings of the words being leaned, b) Signing gets the students actively involved, c) Signing helps improve communication skills.

Web Wanderings
Palaestra: Forum of Sport, Physical Education & Recreation for Those with Disabilities. A quarterly publication by:

Challenge Publications, Ltd.
P.O. Box 508
Macomb, IL 61455
(309) 833-1902
Father's Journal
Emmanuel tries his best to reach for the Mexican cobalt-rimmed bowl of floating red roses as he pronounces an aspirated "f" for flowers. Our bragging rights are not diminished when he holds a telephone flash card to his ear or hears "knows" and points to his nose. My wife Gloria has placed a smaller bowl in Emmanuel's room, with this forbidden fruit, an anniversary gift.