October is Down Syndrome Awareness Month. On Nov. 14 at 6:30 p.m. Marc & Peggy Mitchell are hosting a pot luck dinner and meeting to plan next year's activities. Children are welcome! For directions call 288-9748. Debra Reichert Hoge, co-author of The Source for Syndromes, The Source for Syndromes 2, The Source for Augmentative and Alternative Communication, and Linking Language and a professor of Special Education and Communication Disorders and this year's recipient of the SIUE Great Teacher Award, died Sunday, Oct. 5, after a long illness. She was 50. Hoge has taught classes in speech-language pathology and early childhood special education, in addition to supervising clinical practicum students in the SIUE Speech-Language-Hearing clinic and at various off-campus sites. In 1994 she received a teaching excellence recognition at the SIUE's annual Honors Convocation. Excerpt from STL Today: Search for poet laureate of Illinois draws diverse mix of home-grown bards. SPRINGFIELD, IL. - Illinois' next official poet could be a 38-year-old single mother of a son with Down syndrome. [...] Donna Biffar works in the graphics department of a community college in Southern Illinois. After work, she cares for her two teenage children — including 16-year-old Mike, who has Down syndrome — studies for her bachelor's degree, helps run a small poetry publishing house and writes her own poems. She used to get up at 4 a.m. on weekends to find writing time. Biffar says she has to write poetry. "I think that is life. Everybody needs it, like water. It's communication in its purest form," she said.

NDSS 2003 Conference Report by E. Duff Wrobbel, Ph.D., e-mail: EWROBBE@SIUE.edu We have 2 children, ages 5 and 3, one girl and one boy. One has brown hair, the other blond. And one has Down syndrome, while the other does not. I recently attended the National Down Syndrome Society's annual conference, which was in St. Louis this year. While there, I had the opportunity to listen to such amazing presenters as Dr. Libby Kumin speaking on apraxia, Joan Green on the effective use of visual materials in improving language and literacy, and Nadine Vogel on financial planning. I was thrilled when I had the chance to speak with both Chris Burke and Andrea Friedman, the first TV stars I ever met (unless you count the 30 seconds I spent with Sam Donaldson at the Austin airport in 1993). I was both buoyed and humbled by the stories of amazing folks like Sara Wolff, a remarkable young woman with Down syndrome who has, I dare say, done more to advance the interests of the DS community than most of us without Downs. I think I benefited the most, however, from a presentation on effective discipline strategies by Dr. Hank Bohanon-Edmonson. He was a dynamic speaker, with useful, up-to-the-minute information, and positive behavioral techniques that could be applied under a variety of circumstances. The whole time I was listening, I kept writing frantically and thinking that I needed to share everything I learned with my wife because it all seemed so applicable to our son. He is the 5-year-old, and the blond. I love him with all my heart; just like I do our 3-year-old daughter, but he can be a real challenge. My hope is that some of the discipline techniques I brought home from the conference will help us in dealing with his unique needs. It seems that almost every day, in some quiet way, I find another silver lining to having a child with Down syndrome, and today is no exception. Had our daughter not been born with an extra chromosome, I would have never even thought to attend the conference. Down Syndrome Tennis Academy Update by Vince Schmidt, e-mail: js10s@hotmail.com URL: www.jensen-schmidt.com The Missouri Valley welcomed the only Tennis Academy exclusively for Down syndrome. The Academy was held at the Dwight Davis Tennis Center in Forest Park - St. Louis, Missouri on August 5, 6 & 7, 2003. moonlight is the newsletter of the Riverbend Down Syndrome Association. Editor: Victor Bishop Web Site: http://www.riverbendds.org/

Regional Events
October 17, 9:00 - 15:00. Accessing the General Education Curriculum and Accommodations & Modifications. Keynote speaker: Dr. Rich Villa. Par-A-Dice Hotel & Casino, East Peoria, IL. For more information contact the Heart of Illinois Down Syndrome Association, Inc., Teri Ehrenhardt at (309) 467-6113 or ehrenhar@mtco.com.

December 10-13. Possibilities. TASH International Conference, Hilton Chicago, 720 South Michigan Avenue, Chicago, IL.
Early bird registration rates for the conference are available now until September 30^th.

StarNET Region IV
December 3, 8:30 a.m. - 3:00 p.m. Collaboration: Schools & Families Working Together. Location: Holiday Inn, 222 Potomac Blvd., Mount Vernon, IL. Presenter: Chris Wasik, of Peru, IL is currently a Parent Consultant for Project CHOICES, a least restrictive initiative funded by the Illinois State Board of Education. Chris also provides parent training presentations for Family Matters located in Effingham, Illinois. Contact: Denise Henry: (618) 833-5371.

Down Syndrome Articles
Alex's success offers example, hope to other families, young adults by Patricia Bill, e-mail: pbill@PACER.org. Pacesetter. Vol. 24, Issue 3, Fall 2001, pp. 10-11. © 2001. Used with permission from PACER Center Inc., Minneapolis, MN, (612) 827-2966. www.pacer.org. All rights reserved.

Alexander Luther has a job with the downtown Minneapolis law firm of Mackall Crounse & Moore, an apartment in the suburbs, good friends, a taste for things Hawaiian, and, like many 24-year-old men, hope for a meaningful relationship with a member of the opposite sex. "Alex" also has Down syndrome.
When Alex was a baby, his parents U.S. Rep. Bill Luther and Minnesota Rep. Darlene Luther "never, never" believed he could achieve so much. Alex was healthy, but experts' prognosis for his capabilities was "bleak," recalled his mother. She remembers that materials given the couple suggested several options for rearing their son, including institutionalization.
Alex entered the world, however, at the beginning of what his dad calls "a time of enlightenment." It was 1977, two years after Congress enacted what became the Individuals with Disabilities Education Act (IDEA), which guarantees a free, appropriate public education for all children.
"When Alex was born, we truly didn't know what to expect, but we instinctively grasped onto hope" said Bill Luther. The family decided to

• include Alex in the family's activities, as they would any family member, and
• help him develop to his full potential, whatever that might be.

• Peers with and without disabilities influenced Alex's sociability. Exposure to "typical" children and young adults at school introduced Alex to the mannerisms and interests of others his age. The Luthers set an example of including Alex in all of their family activities, and friends and family followed. In one instance, a popular neighbor boy became Alex's friend. As an adult, he asked Alex to usher at his wedding. Friends from special education and vocational programs also provide a social network for Alex.
• Professionals from the array of disability programs and services available in the Twin Cities addressed Alex's special needs from infancy to semi-independence. Teachers shared their expertise and insights to help Alex. They involved the Luthers as partners in seeking ways for Alex to learn and progress.
• Businesses and local government-the City of Brooklyn Park, Northwest Airlines, and Target, as well as the law firm-made available internships and opportunities for employment that gave Alex job experience and honed his skills.

Tips for parents...
Many PACER staff are parents of children with disabilities. Several have echoed the Luthers' ideas and added tips for rearing children with special needs.

1. Focus on your child as a person-not on the disability. Appreciate your child's many characteristics. The disability is only one. As one PACER advocate put it, "Don't let the disability define the child."
2. Don't believe everything the experts tell you. Balance professionals' expectations with your own knowledge about your child. For example, Darlene Luther insisted on computer training for Alex. The result: he learned the technology and landed a job.
3. Seek emotional support as soon as possible. Support can come from many sources: family, friends, organizations that focus on specific disabilities, and PACER. Another parent who knows what you are experiencing can provide emotional strength, as well as suggestions that may benefit your child.
4. Learn about the disability and help your child from a proactive stance. "Read anything you can put your hands on," said one advocate. Much of the information is free to parents. Physicians may have materials, but they often contain complex medical terms. An organization that focuses on your child's specific disability is another source for information. The Internet is a resource, and so are other parents of children with the disability. PACER advocates have firsthand knowledge about many different disabilities.
5. Learn about your child's and your legal rights as stated in the Individuals with Disabilities Education Act (IDEA) and other civil rights legislation. Use your knowledge to ensure that your child receives what the laws promise. PACER can provide parents with easy-to-understand materials about the IDEA and many other free resources.
6. Provide your child with opportunities to mix with people who have and do not have disabilities. Practice is key to sociability.
7. Expose your child to as many experiences and environments as possible. Learning how to handle varied situations builds confidence.
8. Model how you want people to treat your child. If you regard the child with love and respect, others will follow suit.
9. Show your child how you want him or her to treat others. Children watch you and are wonderful imitators. Refrain from criticizing a teacher or other service providers in front of the child, cautioned one advocate. Otherwise, the child may behave inappropriately toward that person or system-or not accept beneficial assistance from them.
10. Trust in your ability to be a good parent. Listen to the person who loves your child the most, knows your child the best, and will be involved with your child the longest. That's you.

Standing up for Down's by Sophie Radice. The Observer Magazine, Health. June 1, 2003. © Sophie Radice. Reprint permission granted by Sacha Walters, Permissions Executive, e-mail: Sacha.Walters@guardian.co.uk.
People with Down's syndrome have proved they can lead full and independent lives... The real challenge they face, says Sophie Radice, is overcoming society's prejudices.

'I'm an actress, choreographer and a jazz and contemporary dancer. I always have about eight new dances on the go in my head,' says 24-year-old Suzy Beddington. Suzy has been working for the Strathcona Theatre Company for five years and has starred in eight productions. Prior to this, she was an outstanding pupil of the Sylvia Young Theatre School. Just another girl in her twenties dreaming of stardom, you might think. But her achievements are all the more remarkable as Suzy has Down's syndrome.
'People with Down's are all different with varying interests and abilities,' says Suzy's mother, Veronica. 'If Suzy showed an interest in something, we always took it further. We noticed when she was dancing with her sisters in front of the TV that she was really good, so it took off from there. She started attending a mainstream dance school. Now she is an accomplished dancer, not just for a girl with Down's, but for anyone.'
Suzy lives on the top floor of her mother's house and has some independence, although she doesn't plan to leave home in the near future. 'I am always busy. I'm either dancing or acting or listening to Elton John. He writes really good lyrics. I write him letters and he sometimes replies, which is my favourite thing.'
One baby in every 1,000 in the UK is born with Down's. While most people have a pair of chromosomes in their cells, a person with Down's has one particular chromosome which occurs in a three rather than a pair. No one knows what causes the presence of the extra chromosome and it can come from the mother or the father. Older mothers are more likely to have a baby with Down's, but as yet no one knows why.
There are over 100 different characteristics associated with Down's. No one with Down's has all of them and some have only a few. People with Down's vary enormously in appearance, ability and temperament. Typically, they tend to be short in height and have a round face with small delicate features and sloping eyes. One in three children born with Down's has a heart defect and all have a degree of learning disability.
These days, the outlook for people with Down's has improved. Adults hold down jobs, are able to explore their talents and have partners and families. This is in part due to the inclusion of children with Down's into mainstream education, says Carol Boys, chief executive of the Down's Syndrome Association. 'Some children with Down's might not be able to cope with a large secondary school, but for primary education we can see that, not only do children with Down's benefit from being with their peers, but it also gives the other children a positive experience. It is more common now that some young adults like Suzy Beddington have attended a local primary and then gone on to a mainstream dance school. She is a good example of how well this can work.'
A recent survey asked 1,000 people about their perceptions of those with Down's, with questions about life expectancy, education and health. The results showed a lack of understanding of the ranges of capability within the syndrome. Life expectancy was consistently considered to be much lower then it actually is (many adults with Down's live into their early sixties) and expected health problems associated with the syndrome were perceived to be more acute then they actually are.
'This year, for Down's Syndrome Week, we decided that there should be a concentration on adults with Down's,' says Boys. 'While there is a great need for support and information for new parents of children with Down's, it is important to focus on how many adults with Down's have full and rewarding lives. Not only can it help change perceptions of adults with Down's, but also give those who have babies with Down's hope and inspiration for the future.'
Digby Townsend, 22, works three days a week at Tesco's and is fanatically interested in soap operas and film. 'I'm soap mad,' he says. 'My family watches EastEnders, but I prefer Coronation Street. I also like James Bond. Pierce Brosnan is really good.'
Digby's mother, Dide, says that he has always been a trailblazer. 'He was the first child with Down's to attend his comprehensive and since then four others have started.
I asked Tesco's if they would take him on and he was given a trial. That was a year ago. He is good at his work and enjoys the social side of it. That's what makes Digby happy - chatting to other people.'
Dide does not want to gloss over the difficulties in bringing up a child with Down's. She had to fight for support and feels that she was always pushing others to challenge their prejudices. When Digby's school agreed to take him on, they did so only on a term-by-term basis.
Digby has many friends, but Dide wishes he had more his own age. 'We are at a good stage at the moment, because Digby is on the waiting list for a housing scheme in which he will have care and protection, but also independence, living with others with learning disabilities. He is looking forward to leaving home and being with younger people.'
Digby has always been carefree with his wages, but now he has his own place in sight, he's started saving. 'I'm looking forward to leaving home and meeting new people and having my own house. That will be really good, that will.'

Special Olympian spends her vacation with the Kennedys by David Polakiewivz. The Bernardsville News. August 14, 2003. ©Recorder Newspapers 2003. Reprinted with the permission of The Bernardsville News/Recorder Community Newspapers, granted by Elizabeth Parker, e-mail: eparker@recordernewspapers.com.

BERNARDSVILLE - For nearly two decades, Pine Street resident Kristen Clark has been an accomplished two-sport Special Olympian.
This summer, her athletic prowess has led to a friendship with one of the world's most renowned political families.
Clark, who has Down Syndrome, is currently staying at the Kennedy family's Cape Cod compound in Massachusetts. She was invited to spend time there this summer by Eunice Kennedy Shriver, founder and honorary chairwoman of the Special Olympics.
Shriver's and Clark's friendship was spurred by a simple encounter at the New Jersey Special Olympics gymnastic competition in Trenton two months ago. Clark's mother, Pat, wanted to take a photograph of her daughter with Shriver. When Kristen Clark asked Shriver if she would oblige, they struck up a conversation and hit it off.
"When I asked (Shriver) if I could take a picture, she shooed me away," said Pat Clark. "She was so engrossed in talking to Kristen."
Pat Clark eventually got to take the photograph and her daughter later received the chance to spend time with one of the globe's most famous families.
The offer came from Shriver after Kristen Clark competed in July at the Special Olympics World Summer Games in Dublin, Ireland. Shriver attended the competition, at which Kristen, 26, captured gold medals in two events, silvers in two others, and won silver in the all-around gymnastics competition.
Shriver, 82, is the sister of U.S. Sen. Edward "Ted" Kennedy of Massachusetts, the late President John F. Kennedy and the late Robert F. Kennedy. In 1953 she married Sargent Shriver, the first director of the Peace Corps and the Democratic Party's candidate for vice president in 1972. The two had five children, including television journalist Maria Shriver, who is married to actor and California Republican gubernatorial hopeful Arnold Schwarzenegger.
Shriver founded the Special Olympics in 1968, in part because of her experience with her mentally handicapped sister, Rosemary. She also is executive vice president of the Joseph P. Kennedy Jr. Foundation, which funds Catholic organizations and institutions for the mentally handicapped.
Kristen Clark arrived in Cape Cod on Aug. 2 and will return later this month. She has phoned her mother often from Massachusetts and one call produced a memorable surprise.
"I picked up the phone and the voice on the other end said, 'Hi, this is Ted Kennedy,' " said Pat Clark. "He said, 'There are a few people doing handstands on the beach and your daughter is one of them.' "
Her first week in Cape Cod also saw Kristen spending time on the Kennedys' yacht and co-piloting a small airplane, according to her mother.
During another phone call, Kristen asked her mom if she had "heard the announcement" regarding Schwarzenegger deciding last Wednesday to run for governor of California.

Winning Ways
While her vacation with the Kennedys is giving Kristen Clark an introduction to politics, she is already very familiar with winning Special Olympics events. She has never been defeated in a state-level competition in either gymnastics or figure skating in 18 years, according to her mother. Her figure skating partner is Basking Ridge resident Michael Ferraioli.
Kristen spends about 20 minutes each week working with a coach on her pairs skating and another 20 minutes on singles skating.
Many other Special Olympics skaters practice for longer periods, but her gymnastics training helps fill the gap.
Twice each week, Kristen works out at Central Jersey Dance and Gymnastics in Middlesex with the mainstream gymnastics team. She practices at other times, as well, depending on her stamina.
Kristin's mother, a former springboard and tower diver, coaches her.
Kristen wears a brace on her left leg for support. Her athletic prowess could be considered innate, according to her mother, even though she spends much time practicing.
"She was born into it," Pat Clark says of her daughter's skills. "(Kristen) makes the comment that she came out of the womb doing cartwheels."

Against the odds - Couple with Down Syndrome Marries by Brian Davidson. September 9, 2003. Post Register. Permission to reprint this article is granted only to the Riverbend Down Syndrome Association. Each subsequent reprinter must seek permission.

REXBURG - They met at Lava Hot Springs 3½ years ago, swimming in the hot pools.
She was there to celebrate her father's birthday. He was there to mourn the death of the family dog.
Brave soul that he was, Jeremy Martinsen swam up to Simone Nelson. They struck up a conversation. They talked about their families, their love of swimming, their love of Jesus Christ.
They began a long-distance relationship.

Jeremy Martinsen and Simone Nelson, who were both born with Down syndrome, were married last month in Idaho Falls

Jeremy lives in the small town of Afton, Wyo., renting a basement apartment a few blocks from the Lincoln County School District headquarters, where he works as a janitor.
Simone lives in Rexburg with her folks, taking classes at Brigham Young University-Idaho and volunteering at Madison Memorial Hospital.
On Valentine's Day 2003, he proposed.
"She had a present for me," Jeremy said. "I had a present for her."
That present turned out to be a wedding ring, hidden in its velvet box under a corner of Jeremy's bedspread. As she lifted the blanket, he got on his knees and asked for her hand.
Jeremy and Simone both were born with Down syndrome.
When she was born 24 years ago, doctors predicted Simone wouldn't live to see her second year. After Jeremy's birth 29 years ago, doctors didn't say much of anything, aside from a prediction he might not survive his first week.
Both have survived not only open heart surgery but also the occasional ridicule that comes to those with their condition.
The two married last month in Idaho Falls at the Church of Jesus Christ of Latter-day Saints Temple.
"He'll always be there for me," Simone said as they picked up their marriage license. "We'll both live together, go out on dates together. I've always wanted this."
"I love her, and I'll always love her," Jeremy said.
When Jeremy was born, his doctors didn't tell his parents, Dean and Cindy Martinsen, much of anything.
"I was young," Cindy Martinsen said. "Maybe they figured I'd just have more kids after Jeremy was gone."
The little infant struggled, often turning blue as his body fought for oxygen. Consultations with other doctors got Jeremy to Salt Lake City and on the right treatment path.
"He was our first child," she said. "We made up our minds that he would do everything everybody else does."
He did. He and his closest sister, Erin, 27, graduated from Star Valley High School the same year, 1994, two of 175 in the class.
"He helped me as much as I helped him," Erin said. "He takes notes a lot better than I ever did."
Jeremy, the oldest of six children, wanted to serve a mission for the church and persisted with leaders in Salt Lake City and in Wyoming enough that he was sent on a "mini-mission" for three weeks to Omaha, Neb.
Throughout his life, he participated in Special Olympics, taking and still holding Wyoming state titles in weightlifting.
"He's made way more compassionate people out of my kids," his mother said. "All of them, except for the youngest, have been involved with Special Olympics, coaching or being buddies."
For almost a year, Jeremy has lived on his own. He's written a book, "The Book About Life," which the family is self-publishing this fall.
"It's a book about what people go through in life, how they have lots of different support," Jeremy said.
"Philosophies have changed in the past 24 years, but when Simone was born, we were told to put her in an institution and walk away," said Kathleen Nelson, Simonies mother.
Instead, Garth and Kathleen Nelson took Simone the second of four children home and the struggles began.
"She didn't sleep hardly longer than 20 minutes at a time," she said. "We got so attuned to listening to her that if she did sleep longer than that, we'd wake up and have to go in and shake her to get her breathing again."
Simone was born with three holes in her heart, common developmental defects linked to Down syndrome. She had heart surgery to repair the holes at 10 months of age.
"I think what amazes me is that she's always been a magnet for people," Kathleen Nelson said. "If we were at a church function or somewhere else, people always came to see her. She was just happy, babbling."
Simone became a sports nut, always begging siblings, cousins and friends into pickup basketball games. She was manager for Madison High School's volleyball squad and was chosen in her senior year as Senior Prom queen. She graduated in 1994.
At Ricks College, where she took classes in fitness, swimming and religion, she met Joann Reeve, head coach of the women's volleyball squad. She paired up with the team's manager and performed duties such as sweeping floors and occasionally participating in practices.
Simone also tended babies at the in-school nursery at Central High School, the Madison School District's alternative school, and volunteered at Madison Memorial Hospital.
The Nelsons credit the community with Simonies success.
"They say it takes a village to raise a child," Kathleen Nelson said. "Well, here is a child raised by an entire community. She got so much help from students at school, teachers, others she worked with."
And they still are offering, Garth Nelson said. Contributions to a wedding registry bank account have soared.
"We'll look at checks and say, 'Wow, who is that?' " he said. "She's affected way more people than we've been able to send announcements to."
According to the New York-based National Down Syndrome Society, it's a myth that those with the disorder are unable to form close relationships that lead to marriage. The story of Jeremy and Simone attests to that.
"This has been a dream of Jeremy's forever," said Cindy Martinsen. "It's not like we weren't prepared for it; it was just something he always hoped would happen. And here it is. It's meant to be."
"We're both spiritual people," Jeremy said. "We love each other. We'll be together forever."
Her father and his mother teased her at the county building when they got their wedding license.
"Hey," he said. "That's the last time you'll sign your name as Simone Nelson. It's Simone Martinsen, with an 'e,' from now on."
No matter the name, Jeremy and Simone believe they'll make it.
"We're going to live together in Wyoming," Simone said. "We'll cook for each other. We'll clean. We'll be happy."
Jeremy will continue his cleaning jobs. The Nelsons are trying to find Simone a volunteer job with the local school district because she's on Wyoming's waiting list for work for the developmentally disabled. His parents live a scant 6 miles away.
"He's got a lady they rent from who watches out for him," Cindy Martinsen said.
The Nelsons will visit as often as time permits.
"It feels odd, having her leave after such a long time with us," Garth Nelson said. "But it's what she wants. We wouldn't have it any other way."
"I remember something Jeremy said, pretty much to himself, as he was riding in my car one day," Garth Nelson said. "He kind of sighed, raised his hands, and said, 'This is what I've wanted all my life.' I remember asking, 'What is that, Jeremy?' He replied, 'Someone to love me for who I am, and a family to grow into.' He is completely, perfectly content, and so is Simone."

Web Wanderings
Prof accused of murder in baby's death. URL: http://www.philly.com/mld/dailynews/news/local/6467905.htm

...Ener was calm, matter-of-fact even, when she told police she had slit her infant daughter's throat Monday morning.
The Villanova University professor, who was visiting family in St. Paul, Minn., had been depressed since the child was born with Down syndrome six months ago. She worried that little Raya Donagi, who had spent some time on a feeding tube, would lead a miserable life.
"She felt the baby was suffering," St. Paul Police Sgt. Bruce Wynkoop said.
Ener, 38, was charged in St. Paul yesterday with second-degree murder. If convicted, she faces a maximum sentence of 40 years in prison. She was in custody yesterday.
Police said that about 9 a.m. Monday, Ener, a small woman with green eyes and dark blonde hair, finished feeding the baby and took her into the bathroom. There she laid her on her back and pressed a 12-inch-knife twice on her fragile neck.

Father's Journal Goggles become him It has been a while since we stopped carrying Emmanuel and my son is not quite sure why he no longer fits comfortably on my lap. But I can still hold his hand and dive to the bottom of the pool and have you seen his beautiful smile underwater?

"I killed my baby with a knife," she told medics when they arrived at the house.
Ener had been having problems since Raya's birth in February, family members said. Ener told police that she had thought of ending her own life. [Ed. note: Ener took her life in her jail cell, suffocating with a garbage liner bag over her head.]
[...] A neighbor who saw the mayhem at Ener's parents' house Monday said the baby was limp and colorless when she was rushed from the house. The medics worked on the child for some time before she died, the neighbor said.
"The firemen were in tears," said the neighbor. "These gigantic, 250-pound firemen were on the back of the truck crying."