|October 2003 Issue||
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. [...]
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: firstname.lastname@example.org URL: www.jensen-schmidt.com
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 email@example.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 30th.
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
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.
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: firstname.lastname@example.org.
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.
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|
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.