May 2000 Issue

Mark your calendars for a very special evening! Our next meeting on May 12th at 6:30 p.m. we will have a music mini-recital. Christian Bristol, who happens to have Down syndrome, will play the violin. We will be joined by Christian's mother, Linda Bristol, who teaches violin and piano using the Suzuki method; Vera McCoy-Sulentic, head of SIUE's Suzuki program and one of Christian's violin teachers; and Nancy Anderson, who introduces young children to music at SIUE through pre-Suzuki classes. We will hear about how children learn music, the Suzuki method. Please plan to attend; we hope for a large turnout to hear Christian perform! The meeting location is 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 Route 157, 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.

Enclosed is the 1999 edition pamphlet How to Participate Effectively in Your Child's IEP Meeting, published by the Family Resource Center on Disabilities, Chicago, IL. (312) 939-3513.
blank.gif  Regional Events
May 3rd 7:00 p.m. Turning Learning Disabilities... Into Learning Opportunities. Seminar instructor: John M. Jaquith, M. Ed., NACD's Director of Education. Location: Bonhomme Presbyterian Church Chapel, 14820 Conway Road, Chesterfield, MO. The seminar is sponsored by the National Academy for Child Development, URL: Cost: $15 pre-registered, $20 at the door. Spouses free. To register call (801) 621-8606, Fax: (801) 621-8389.

June 4th Game time: 13:10. Down Syndrome Association Day at Busch Stadium. St. Louis Cardinals vs. Cleveland Indians. Tickets: $6.50, children under 3 free, blocks of tickets may be reserved, within reason, by calling early; invite your buddy walk buddies, family and friends. Meet Fredbird. Fans 15 and under receive a pennant featuring a Cardinal player and a coupon compliments of Pasta House and Coca-Cola. Contact: Beth Schroeder (636) 527-2452. Order deadline is May 22. Make check payable to: Down Syndrome Association of Greater St. Louis and mail to:

DSA Cardinal Game
c/o Beth Schroeder
133 Smith Drive
Ballwin, MO 63001
April 29th 7:00 - 8:00 p.m. Easter Seals of Southwestern Illinois' The Millenium Ball. Black Tie Event. Pere Marquette Lodge. RSVP: 462-732.

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:

Saint Louis University, St. Louis, Missouri Request for Volunteers for a Research Study: Comparison of Vitamin Supplements in Patients with Down Syndrome.
Parents and guardians of Down syndrome children are invited to consider participating in a research study to evaluate the effects of two vitamin supplements in Down syndrome: NuTriVene-D and Flintstones Chewables. For further information, you or your child's physician may contact:
Dr. James Shoemaker M.D., Ph.D.
Director, Metabolic Screening Lab
Saint Louis University School of Medicine
1402 S. Grand
St. Louis, MO 63104
Home Control through Estate and Financial Planning. A 60 page book on understanding government benefits, preserving eligibility for government benefits through estate planning, and planning for residential options for persons with developmental disabilities, Home Control was originally commissioned by and funded through a grant from the Illinois and Missouri Planning Councils on Developmental Disabilities. To request a copy of Home Control through Estate and Financial Planning please send $10.00 for postage and handling to:
Spain, Spain & Varnet, P.C.
33 N. Dearborn #2220
Chicago, IL 60602
(312) 220-9112
Down Syndrome Articles
Excerpted from the book After the Fire: The Destruction of the Lancaster County Amish (1992), by Randy-Michael Testa, page 83, describing a "candy scramble" at a large social gathering:

The woman's directions in Dutch [German] get more urgent and the circle of children is squirmy, ready to spring. She and an old, white-haired Amishman using a cane carry a shiny chrome washbasin full of candy into the center of the circle. One little boy of about four bolts for the candy and the crowd roars as he is restrained by his mother. Across the circle another child, this time a girl of about five, does the same thing. Again, laughter. And a third child, a boy of about fourteen with Down's Syndrome heads out, and his father hugs him, standing behind the boy with a big smile as the adults behind him say in English, laughing, "where do you thing you're going?" There is no embarrassment or reluctance to have this big boy included in the circle of little children. The Amish believe that "special children" are God's angels in disguise. A family receiving such a child is considered blessed.

I Have Down Syndrome by Margaret Muller. Special to The Washington Post. Tuesday, September 14, 1999, page H9. © 1999 The Washington Post Company.

Today I'd like to tell you about Down syndrome. My purpose for talking about this is to be able to say, "Yes, I have Down syndrome. Sometimes I have to work harder to learn things, but in many ways I am just like everyone else." I would like to tell people that having Down syndrome does not keep me from doing the things I need to do or want to do. I just have to work harder.
Down syndrome is a condition and not a disease. You cannot catch Down syndrome like you can catch a cold or virus. It is something you are just born with-like blond hair and blue eyes. If you have Down syndrome when you are born, you will have it your whole life.
People without Down syndrome have 46 chromosomes, which carry all the genetic information about a person, in each of their cells. People with Down syndrome have one extra chromosome. So a person with Down syndrome has a total of 47 chromosomes in each cell. Doctors and experts are not really sure what causes it, but they say it occurs in about one of every 700 babies. This happens randomly, like flipping a coin or winning the lottery.
Everyone with Down syndrome is a totally unique person. The extra chromosome makes it harder for me to learn. Sometimes I need someone to say, "Settle down and get busy!" Also, it's really easy for me to be stubborn, so I don't mind if you say, "Hey, Margaret, please stop."
Even though I have one extra chromosome, the rest of my chromosomes carry information from generation to generation just like yours. Chromosomes control certain genetic characteristics, like eye color, skin color, height and some abilities like music, art or math.
For example, I get my blue eyes from my father, my fair skin and freckles from my mother, my blond hair from my grandmother, my long thin feet from both my mom and my dad, and my need to wear glasses from both my grandparents and my parents. I like to concentrate on the ways that I am like everyone else.
I am very lucky to be alive today rather than 50 years or even 20 years ago, because back then the doctors and experts believed that people with Down syndrome were not capable of learning. But now we know that people with Down syndrome are capable of doing many different things.
I personally am doing things that some people didn't think I could do. When I was born, somebody told my mom that it was too bad that I was named "Margaret" because I would never even be able to say my name. That person might never have expected that I could win four medals in Special Olympics swimming, be a green belt in karate, cook a pizza, read a novel, run half a mile or get up in front of the class and give a speech! With a lot of hard work and encouragement, I have been able to do all these things.
I am not sad about the fact that I have Down syndrome. It is just part of me. I have a great brother (most of the time), and parents who love me a lot. I have wonderful friends who enjoy hanging out and having fun with me. I have teachers who help me keep on learning new things. I am glad to be a student at Lincoln Middle School, because it is a great school and almost everyone is really nice. Down syndrome has not stopped me from having a worthwhile life.

This is a speech Margaret Muller presented to seventh- and eighth-grade classes. This fall she began high school classes in California.

Yes Philip, it is empty! Fiction by the Rev. Harry Pritchett Jr., St. Luke's Journal of Theology, Spring 1975. © Copyright the University of the South, Sewanee, TN.

Philip was born with Downs Syndrome. He was a pleasant child — happy, it seemed, but increasingly aware of the difference between himself and other children. Philip went to Sunday School every week. His teacher taught the third-grade class with Philip and nine other 8-year-old boys and girls.
You know 8-year-olds. And Philip, with his differences, was not readily accepted. But his teacher was creative. The group of children learned, laughed, and played together. And they really cared about one another, even though 8-year-olds don't say they care about one another out loud. The teacher could see it. He knew it. He also knew that Philip was not really a part of that group. Philip did not choose nor did he want to be different. He just was. And that was just the way things were.
The teacher had a marvelous idea for his class the Sunday after Easter last year. You know those things pantyhose come in — the containers that look like great big eggs — the teacher had collected ten of them. the children loved it when he brought them into the room. Each child was to get one. It was a beautiful spring day, and the assignment was for each child to go outside, find a symbol of new life, put it into the egg, and bring it back into the classroom. They would then open and share their new life symbols and surprises one-by-one.
It was glorious. It was confusing. It was wild. They ran all around the church grounds, gathered their symbols, and returned to the classroom. They put all the eggs on a table, and then the teacher began to open them. All the children stood around the table.
He opened one, and there was a flower and they ooh-ed and aah-ed. He opened another, and there was a little butterfly. "Beautiful," the girls all said, since it is hard for 8-year-old boys to say "beautiful." He opened another and there was a rock. And as third-graders will, some laughed, and said, "That's crazy!"
The teacher said something to himself about the profundity of 8-year-olds and opened the next one. There was nothing there. The other children, as 8-year-olds will, said, "That's not fair. That's stupid! Somebody didn't do it right!"
Then the teacher felt a tug on his shirt and he looked down. Philip was standing beside him. "It's mine," Philip said. "It is mine."
And the children said, "You don't ever do things right, Philip. There's nothing there!"
"I did so do it right," Philip cried. "I did do it. It's empty. The tomb is empty!"
There was silence, a very full silence. And for you people who don't believe in miracles, I want to tell you that one happened that day last spring. From that time on, it was different. Philip suddenly became part of that group of 8-year-old children. They took him in. He was set free from the tomb of his differentness.
Philip died last summer. His family had known since the time he was born that he wouldn't live out a full life span. Many other things had been wrong with his tiny body. And so, later last July, with an infection most normal children could have quickly shrugged off, Philip died. The sickness simply enveloped him.
At the funeral, nine 8-year-old children marched up to the alter, not with flowers to cover over the stark reality of death. Nine 8-year-olds, with their Sunday School teacher, marched right up to that tiny coffin, and laid on it an empty egg — an empty, old, discarded pantyhose egg.

An everyday courage. Despite battles, physical and emotional, 21-year-old Ashley Wolfe remains irrepressible by Bella English, Globe Correspondent. Boston Globe, 3/9/2000, p. F01. © Copyright 2000 Globe Newspaper Company. [Editor's note: see also, Down Syndrome Doesn't Mean "I Can't". Family Circle, 3/7/2000, p. 63, where Ashley Wolfe is one of the four success stories.]

SOMERVILLE - She received a standing ovation when she spoke at her high school graduation. She's currently in her third year at Lesley College in Cambridge. She recently played a role in the NBC drama, "Third Watch." Two afternoons a week, she volunteers at Massachusetts Eye and Ear Infirmary. She has a new job at Harvard's Fogg Art Museum. She also has Down syndrome.
When Ashley Wolfe was born 21 years ago, her parents knew at once something was wrong, though "wrong" is not the word they would choose. Nancy and Stanton Wolfe consider their daughter pretty perfect the way she is. "She just has a little extra chromosome," her mother says.
And that is how Ashley Wolfe has tried to live her life: putting that extra chromosome in its place. "Having Down syndrome is just one little part of me," she says. On a recent day, she looks pretty much like any other young person: wearing jeans, a red shirt, gold star earrings, pouring a cup of tea for a visitor in the Union Square apartment she shares with two other students.
Yes, there are the vision problems, the speech that will slur if her vigilant attention to enunciation drifts, the gait problems that come from having one leg shorter than the other, the social problems that dog those with Down syndrome. But she wants people to know there's more to her than a medical diagnosis. "Back in the early ages," she says, "people with Downs were called mongoloids and they would institutionalize them. My parents really wanted me to be mainstreamed. I'm glad."
It was in the recovery room that the Wolfes learned for certain their newborn had Down syndrome, a genetic condition that causes multiple problems, including mental retardation, and occurs in one of every 800-1,000 live births.
The pediatrician arrived just after Ashley and said two things the Wolfes will never forget: "She's beautiful," and "Her heart's perfect." Many Down babies have serious heart defects. For Ashley's good heart, her parents were grateful.
But there were other folks whose comments cut deeply. "Are you taking her home?" was a question the parents heard often those first several hours.
There was never any doubt that Ashley would be well loved and supported. From the start, the Wolfes wanted her to be mainstreamed, which meant that she was in many regular classes, where she had her own aide. For other subjects, she went to the resource room, which offered smaller classes for slower learners. By the time she graduated from Simsbury High School outside Hartford, she had made the honor roll seven times. She had even taken Spanish.
"I had to work extremely hard to do that," says Ashley. "My parents made me study extremely hard."

A powerful message

But her crowning achievement thus far came on graduation night in June 1997. She stood at the podium before 3,000 people and delivered a powerful message of hope called "Opening Eyes, Opening Minds." She and several other students had auditioned in front of a faculty committee; only three were chosen. "I wrote it," says Ashley, "but I had help from my parents and speech therapist."
Principal Dennis Carrithers remembers the speech well. "It was one of the most beautiful things I've ever seen at any school," he says. "She spoke about the things she learned here, the people who mattered to her. When she finished, people were on their feet, wiping away tears.
"She's a really strong lesson that we never want to set limits on people," Carrithers says, "because we have these wonderful surprises like Ashley."
That's not to say life has been easy. "It's been a very big struggle for both me and my parents," Ashley says, sitting at her kitchen table, her appointment book in front of her. She is proud of the fact that she is organized, right down to a list of questions to ask the reporter. ("When will the story run? What section?") "I have to write everything down," she says, "or I might not remember."
The social issues have been as painful as the physical ones. "People said, 'Does she have potential? Is there a future for her?"' she recalls. "In school, labels are put on. 'Oh, you're a special ed student.' The normal kids didn't want to be around us. I had very few friends."
It's not that other children overtly teased Ashley, her mother says, but neither did they seek her out. "We joined the Brownies and stuff like that," Nancy Wolfe says, "but I think she was always unsure of herself around kids her own age."
When Ashley was 7, she underwent several operations for dislocated hips and spent two years in a cast from her toes to her waist. "I basically had to learn to walk again," she says. Years of physical and speech therapy followed.
When complimented on her speech, she smiles. "Thank you," she says. "It took a long time. Every once in a while, I do get lazy with my speech. I'll have people tell me to please repeat things."
Obviously, Ashley Wolfe is on the high end of those with Down syndrome. Her main cognitive problems are with math and directions, and health issues remain. She is not able to drive.
To help her with time - she has trouble with clock faces - her parents bought her a digital watch. "She's always way early, just to protect herself," says Nancy Wolfe, an actress who runs a summer arts program at Wesleyan University. Money is another problem: she simply has difficulty handling it.
Ashley describes her limitations this way: "I have a very hard time with integration. That basically means putting things together, like walking into a situation and making sense of it."

'Irrepressible spirit'

One of her mother's favorite pictures is of Ashley as a 3-year-old. "She had these long blond pigtails, an eye patch, glasses and braces on her legs, and she was dancing around the living room," says Nancy Wolfe. "She has this irrepressible spirit. Sometimes, she calls me up and cries. I just say, 'No, it isn't fair, Ash.' If you had told me three years ago that she would be living on her own and balancing her checkbook I wouldn't have believed it. She has continued to raise the bar for us."
Her father describes her as "nothing short of a miracle." His expectations for her? "I never allowed myself expectations," he says, "but I also never had limitations, and I think that is key. I felt there was no limit on what she could accomplish." Her greatest achievement? "Who she is."
That Ashley has achieved so much is due in large part to her family. Stan Wolfe is a facial surgeon who recently went back to school and earned a master's degree in public health. He is now oral health director, as well as supervisor of school and primary health, for the Connecticut Department of Public Health. Nancy Wolfe has worked with multiply-handicapped kids in the theater. The couple were determined to give Ashley the most normal life they could.
But perhaps their greatest gift was Rebecca. "Rebecca," says Ashley with a smile, "is wonderful."
Rebecca is the sister who arrived 3½ years before Ashley. A magna cum laude graduate of Harvard, Rebecca also lives in Somerville. One of her earliest memories is being told that her very special sister had just been born. One of her best memories is Ashley's graduation speech. "It's one of those things," she says, "where you felt bad for the person who had to go after her."
"We are very close," Ashley says. "I take the bus to her house."
'Shley' is what Rebecca calls her younger sister. She is unabashedly proud of her, and has always felt more a little mother than a big sister. "There's a lot of sadness for me around not ever having a normal sister relationship," she concedes. When she was in college, Rebecca Wolfe wrote a story for a student magazine called, "Hero Worship: How Down Syndrome Challenged the Love Between Two Sisters." In it, she recounted the fierceness with which she protected her sister - and the embarrassment she sometimes felt.
"I'd spent my elementary years terrified that someone would make fun of me for Ashley. I hated myself for feeling even a little ashamed of her, and dared them to try it," she wrote. "I will always have conflicting and confusing emotions of love, admiration, frustration, and sadness for her."
Today, Rebecca Wolfe is the program coordinator for GEAR UP - Gaining Early Awareness and Readiness for Undergraduate Programs - which aims to increase the number of Boston's poor minority youth who go on to college. She majored in sociology with a focus on urban education and for five years has taught in the Boston public schools. She has no doubt that her save-the-world philosophy is due in large part to Ashley.

Lifelong bond

"From a very early age," she says, "I've been aware of people who don't have as many choices as others." Last year, she was feeling itchy to leave Boston but decided against it. "Ashley is the major reason," she says. Her parents have never pushed her to stay.
"It's been a godsend," admits Nancy Wolfe, who visits her daughters regularly. She adds: "We have never said to Becca, 'Take Ashley out to lunch, take Ashley to the movies.' In fact, I have continually said to her, do not make your life plans because of Ashley. That's our issue, not yours."
But Rebecca knows that her life will always be closely linked to her sister's, and her parents know Ashley will always need some support. "I think I will always feel a great deal of responsibility for Ashley." Rebecca says. "And I want to be around."
Recently, Ashley has suffered from fibromyalgia, a painful muscular-skeletal disorder, and gastro-intestinal problems. Rebecca has had to leave work early to take her for medical appointments. If it's cold outside, she'll remind Ashley to dress warmly. When Ashley felt ostracized by others at Lesley, Rebecca was furious, telling her sister, "they're a bunch of idiots." Boy advice? Rebecca Wolfe laughs. "If anything, she gives me advice."
Rebecca has endured the well-meaning but ignorant comments of friends, such as: "People with Down syndrome are always so happy and loving." She likens life with Ashley to a bed of roses. "There are lots of thorns, lots of upkeep, lots of fertilizing, lots of water. But the roses still bring a smile to your face." If she were pregnant, Rebecca Wolfe would have the amniocentesis her mother never did. "I'd want to have the knowledge ahead of time," she says.
After some initial adjustment problems at Lesley, Ashley has made friends and recently broke up with a boyfriend she met there. He has multiple disabilities, but not Down syndrome. "It was a bad match," Ashley says. "He wasn't respecting my needs."
Last weekend, she was invited to a birthday party in Natick. She and a friend-who is in a wheelchair-met at South Station and went together. "It just blew my mind," says her mother. "They figured out the time, schedule, where to meet, where to go, how much money they needed."
The two-year certificate Ashley earned at Lesley is geared to people with learning disabilities and other handicaps; she is only the second Down syndrome student to enroll. She graduated last May and is now taking part in a transition year where students learn to live independently, paying their own bills, cooking their own meals, getting around on their own. An adviser checks on her and her roommates weekly.
"Ashley is verbally quite advanced but cognitively there are limitations," says Carol Noveck, coordinator of career services for Threshold. "She is a wonderful and dynamic example of what a person with a good self concept, with courage, with support, with love can dream about."

Love and hope

One of Ashley's dreams came true recently when she snagged a guest role on "Third Watch." She played the part of a 15-year-old handicapped girl whose boyfriend is accused of raping her. ("But it was really consensual," Ashley says). Her mother, who models, acts and teaches drama, helped her get the part and stayed on the set with her. Ashley, a gold medalist swimmer in the Special Olympics, also gives speeches about living with Down syndrome.
"My goal is to change the way people think about us," she says. "I do have special needs, but I have special abilities. I just want to be seen as who I am."
In a booklet she created while at Harvard, Rebecca Wolfe compiled photographs from Ashley's life and helped her sister put words to them. It is called, "A Different Kind of Knowledge" and is dedicated: "For Shley-shley, who has the courage to wake up every single day with the knowledge of the constant challenges and frustrations she will have to face. And who still gets out of bed. All the love a sister can give."
At one point, Ashley wrote: "I am not too sure about the future. I just do the best I can do. Maybe have a job, get married, have kids. Because everyone has to work because we need money and we need to find love and hope."
Father's Journal
We met David, graying hair, non-verbal. David's mother delicately tries to shield us from her past, which started when she was 17, and says benevolently, "Your son only has a touch of Down syndrome". As David and my son Emmanuel go down the stairs, sharing the same tentative descent and syndrome, I am aware of 35 years of unconditional love and dedication.
On the last page, there is a picture of Rebecca holding Ashley tight. Ashley concluded: "I talked a lot about how painful it is that I do have Down syndrome and all of the obsticles [sic]. I try and not let them take over me. I just can't."

Web Wanderings
Illinois Planning Council on Developmental Disabilities (217) 782-9696.
The Council awards grants to organizations that serve people with disabilities in four key areas: child development, community living, employment and system coordination and self-determination.