When:  Tuesday, Sept 14 at 7:30pm

Where:  Heidi Slater’s house / 2060 Bally Moor Drive / Downingtown, PA

Please RSVP to Heidi Slater at heidi_huseby_slater@yahoo.com or (703) 627-1316 (cell), or to the CCDSIG hotline at (610) 889-3151.

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 This conference will provide an opportunity for students, parents, researchers, colleges and universities and practitioners to meet with top experts in the field and hear about exciting postsecondary initiatives across the country. The conference registration is expected to fill up fast. If you are interested in attending we encourage you to register immediately. 

Click here to register and for more information.

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Location:  Heidi Slater’s house, 2060 Bally Moor Drive, Downingtown  (484) 784-5159

Please contact Heidi to let her know if you are able to attend the event!

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Who: Boys, ages 3-12, with Down syndrome to participate in a behavioral and genetic research study.

What: We will be testing learning skills, behavior, and measuring physical and motor development. We will also obtain a small blood sample for future genetic studies. We would like parents to complete cognitive testing as well, to help us understand more about their child. Participants will receive free lunch on each day of testing. In addition, a detailed report based on your child’s performance will be sent to you 6-8 weeks after your visit. There is no cost associated with joining this study. Reimbursement for travel will be provided.

Where: At the Kennedy Krieger Institute, Center for Genetic Disorders of Cognition & Behavior (707 North Broadway, Baltimore, MD 21205.)

When: The study takes place over the course of two consecutive days, each lasting about 5 hours. We will try our best to accommodate your schedule!

Why: To learn about the behavioral and cognitive features of children with Down syndrome, and to look specifically at the diagnosis of autism spectrum disorders within Down syndrome.

How: Join today! If you are interested in participating, please contact Marie Andachter, Study Coordinator at 443-923-7716 or andachter@kennedykrieger.org.

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• Family fun and face painting!
• A free t-shirt!
• Games and activities at the Zoo Pavilion from 12PM-3PM!

For more information, please contact Jennifer Bonawitz, Director, at 215-990-8730 or T21club@comcast.net. or visit http://www.t21clubofthedelawarevalley.org.

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Dennis McGuire, PhD
Adult Down Syndrome Center of
Lutheran General Hospital
Park Ridge, Illinois

This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original.

If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.

Development of the
Adult Down Syndrome Center

Before beginning, let me provide a little history. NADS, as the oldest Down syndrome parent organization in the country, had many members who had teen and adult age children. These families found there were few health or social services available to them. Sheila Hebein, Executive Director of NADS, was determined to develop resources for these individuals and their families. She recruited the Center’s Medical Director, Dr. Brian Chicoine, and myself to help develop and then run the Center, and we continue to have a very close working relationship with NADS.

Why us? Brian had some experience in his medical practice with persons with disabilities, but he also did not have a great deal of contact with people with Down syndrome. One could say I also had led a sheltered life. Sheila’s son, Chris, was probably the first person with Down syndrome I had ever met. Still, Sheila seemed to know this would work. The good thing about our lack of experience was that we were able to listen to the families and the people with Down syndrome without any preconceived ideas, assumptions, or biases.

We learned quickly that the families are the experts with regard to their sons and daughters-because they had to be. We view the information we have gathered from families as a repository of their wisdom. We hope this paper will be helpful to families who are searching for ways to improve the lives of their sons and daughters.

What would happen if people with DS ruled the world?

If people with Down syndrome ruled the world:

Affection, hugging and caring for others would make a big comeback.

Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.

All people would be encouraged to develop and use their gifts for helping others.

In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.

People would be refreshingly honest and genuine.

People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”

We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.

However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and …can they dance! (and by the way, who needs a date… “Just dance”).

Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning. (Many people love it so much, they will chase the band down at the end of the night, begging them to continue.) Perhaps, too, part of the reason they love weddings so much is not just because of the food and dancing, but because in many cases the rules against hugging are temporarily suspended. This may give people a little piece of what I experienced in Argentina. Whoa! Can you imagine what the world would be like with so much affection unleashed?

People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.

People with Down syndrome have a reputation for “talking to themselves.” When conducted in a private space, self talk serves many adaptive purposes.

It is a wonderful means to ponder ideas and to think out loud. It allows people to review events that occurred in the course of their day. It allows people to solve problems by talking themselves through tasks. It allows them to plan for future situations. It is also helpful in allowing people to express feelings and frustrations, particularly if they have difficulty expressing their feelings to others. There is even evidence that athletes who do not have Down syndrome use self talk to motivate themselves. Certainly people without Down syndrome talk to their computer (particularly when it crashes), and likewise many people talk out loud when driving in Chicago. (Of course they may also make odd gestures as well; not recommended if long life is one of your ambitions.)

Order and Structure would rule

We have heard that many people with Down syndrome are stubborn and compulsive. Now, I know what many of you are thinking…“Did you really have to bring that up?” I’m sorry, but—we do. What we hear is that quite a few people have nonsensical rituals and routines. They can get stuck on behaviors that can drive family members a little crazy.

Despite the irritations, there are also many benefits to these “obsessive compulsive tendencies.” We actually have termed these tendencies “Grooves” because people tend to follow fairly set patterns, or “grooves,” in their daily activities.

What are the benefits of Grooves? Many people with Down syndrome are very careful with their appearance and grooming, which is especially important since they often stand out because of their physical features. Grooves also increase independence because most people are able to complete home and work tasks reliably when these tasks are part of their daily routine. (And while they are not fast … they are very precise.) For many with Down syndrome, grooves serve as a way to relax. Some people repeat a favorite activity in a quiet space, such as writing, drawing, puzzles, needlepoint, etc. Grooves also serve as a clear and unambiguous statement of choice (very important for people with language limitations). This may even be a way for teens with Down syndrome to define their own independence without getting into the same rancorous conflicts with parents as many other teens.

So given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how:

• Schedules and calendars would be followed.
• Trains & planes would run on time.
• Lunch would be at 12:00. Dinner at 6:00.
• Work time would be work time.
• Vacation would be vacation.

At the Center, our receptionist, Shirley, will often have people at her desk pointing to the clock or their watches. Obviously, she hears about it when we don’t take people back at their appointment time, but she also found that some people refuse to go back early: “Nope I am not going at 9:45, my appointment is at 10:00,” nor does going over into the lunch period work. I am sure all of you have similar stories.

But there is much, much more:

• People would be expected to keep their promises.
• Last minute changes would be strongly discouraged (if not considered rude and offensive).
• Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).
• Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).
• The “grunge look” would be out, way out.
• “Prep” (but not pretentious) would be very big.

In the world of Down Syndrome, there would be a great deal more tolerance for:

• Repeating the same phrase or question
• Use of the terms “fun” and “cleaning” in the same sentence
• Closing doors or cabinets that are left ajar (even in someone else’s house)
• Arranging things until they are “Just so.”

Despite their compulsions and grooves, people with Down syndrome rarely have the really ‘bad habits’ that so many of us have. In fact, out of approximately 3000 people we have seen at the clinic, we have not seen any drug addicts or gamblers and just two alcoholics and a very small number of smokers. However, we think that pop may be a common addiction in the world of Down syndrome, and of course some people are incurable savers and hoarders of just about everything, but especially paper products and writing utensils. Because of this, I could see maybe a Betty Ford Center for pop addicts and extreme paper hoarding.

The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.

At the Center, we frequently hear about pace, or how fast or slow people move. Quite often these issues are discussed in disparaging terms by harried and frustrated family members. In this world, people with Down syndrome have a reputation for having two speeds, slow and slower.

Therefore, in the world of Down Syndrome:

• Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.
• Here and now would command a great deal more respect than it currently does.
• Stopping to smell the roses would not be just a cliché.
• Work would be revered, no matter what kind, from doing dishes to rocket science.

We have consistently seen respect and devotion to work by people with Down syndrome. This is such a strong characteristic for many that they don’t want to stay home from work even if feeling ill. Perhaps more importantly, they value any kind of work.

Therefore, if people with Down syndrome ran the world:

• Speed would be far less important than doing the job right.
• Work would be everyone’s right, not a privilege.

However, we think there would probably be no work conducted during the time that “Wheel of Fortune” is on TV.

All instruction would include pictures to aid visual learners.

Many studies have shown that individuals with Down syndrome have deficits in auditory memory. If they cannot remember verbal instruction, they may be considered oppositional or less competent in school, home, or work environments. Despite this, they have exceptional visual memory-they are visual learners. If they see something once, they can usually repeat it. They also have an exceptional memory for facts and figures of interest (favorite celebrities, movies, music, sports teams, etc).

If people with Down syndrome ran the world:

• School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.
• Counselors would be able to use visual mediums to help solve problems.

What About News?

If people with Down syndrome ran the world:

• Weather would be the only essential news item
• News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?

What About Bad News?

If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”

What About “Behaviors”…

…and terms such as (the ever popular) “Incident reports,” “Outbursts,” “Unprovoked outbursts” (one of our all time favorites), and of course “Non compliance”?

We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Brian Chicoine and I both figure that we would have been on major psychotropic medications long ago if we had people writing up incident reports on us.

We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people.

Therefore if people with DS ran the world:

• Anger would only be allowed in special sound proof rooms.
• Trained negotiators would be available to everyone to help deal with any conflicts.
• The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”

What About Self Expression?

• Art and music appreciation would be BIG.
• People would have time to work on paintings and other art projects.
• Acting and theatrical arts would be encouraged for all.

Dancing

• You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight … absolutely.”
• The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.
• People would be encouraged to get married several times to have more weddings for more music and dancing.
• Richard Simmons and John Travolta would be national heroes.

Music

• Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)
• Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)
• John Travolta would be the biggest star.

Television

• Classic TV hits would be very BIG and take up at least half the TV schedules.
• “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.
• Wrestling would be very Big.
• “Life Goes On” would also be very Big and replayed regularly.

Movies

• There would be fewer movies, but they would be replayed over and over.
• Movie theaters would allow people to talk out loud to tell what happens next.

No Secret Agents

• People would not hurt the feelings of others and they would also not lie or keep secrets.
• Therefore there probably would be no secret service agents, spies, or terrorists.

The purpose of this article is to give back some of what we have learned to the families and people with Down syndrome who have come to the Adult Down Syndrome Center and who have been so giving and open with us. If people understand more of the special talents people with Down syndrome have, they may be more able to help them use and develop these talents to improve their lives. We also wanted to reassure families of younger children with Down syndrome who are concerned about their child’s future that there is much to be optimistic about.

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By Karen White

At first glance, there’s no mystery to the “d” in “Company d.” It stands for dance, or maybe for Darlene Winters, the speech therapist and lifelong dancer who founded the group nine years ago. Learn a bit more, and you might think it refers to Down syndrome. Perhaps. But anyone looking to describe these dancers with another “d” word—disabled—would be very, very wrong.

  “I feel my heart as I dance inside my soul,” says Kenny Thielemier (Photo courtesy Darlene Winters)

 And what can a company of dancers born with Down syndrome do? How about move an audience of 100 hardened New Yorkers to tears? Learn and retain a performance repertory of modern, jazz, and lyrical dances? Commit and keep to a twice-weekly class and rehearsal schedule with performances once a month? Deal like professionals with technical snafus or unfamiliar dance spaces? Take class alongside Liza Minnelli (who was so moved that she jumped up and sang “New York, New York” right on the spot)? Never mind making friends, creating art, walking tall. Dreaming. Inspiring. “I feel my heart as I dance inside my soul,” says Kenny Thielemier.

 “They’ve taught me to have more patience and more understanding of how to get through to students,” master teacher Francis Roach of Luigi’s Jazz Centre in New York City says. “I just fell in love with them, and I think the feeling is mutual.”

 None of this comes easily—not to the dancers, struggling with communication and social and physical challenges; not to their parents, often overwhelmed with raising a special-needs child; and not to Winters, who handles the entire load of teaching, choreographing, coordinating, and networking needed to keep the company going.

 “The biggest question I get from people is, ‘How did you get started?’ ” Winters says. “Where did you come from to get to this spot in life? Well, it’s been a journey.”

 The journey began when Winters, a speech language pathologist, began to notice how integrating music and the arts into her work with special-needs students at a private school got results. One day her boss, a Benedictine nun, proposed a hefty challenge: “You like dancing—why don’t you do The Nutcracker for Christmas?”

 That was the beginning. Winters started teaching ballet and jazz to her charges, putting on dance productions. She began coordinating with the Memphis Arts Council, creating cross-curriculums with public school teachers, sharing dance with any and all special-needs populations. When the Memphis Early Intervention program wanted a special show to mark the 15th anniversary of its Special Kids and Families program, which assists Down syndrome children from birth to age 3, it approached Winters. Winters took five of the program’s first graduates (now all 15 years old) and taught them a dance to “Night Fever.” It was a smash, and Company d was born.

 “[The dance] was so simple, yet after it was over, I said to the parents, ‘I want to keep doing this. Just tell me where and when,’ ” Winters says. “It was one of those things like breathing. I couldn’t wait to start class with those kids.”

 Those original five are still with Winters and have been joined by nine other senior company members, all between the ages of 18 and 32, plus 10 apprentices in their mid-teens. All sign commitment contracts, take class, and learn choreography every Tuesday and Thursday from 4:00 to 6:00 p.m., and they put in extra hours to prep for performances.

 About once a month the company dances publicly, whether it’s a low-key show at a senior citizens center or a performance for an audience of 600 at the National Down Syndrome Conference. They’ve headlined Diversity Day at the Fed Ex national headquarters in Memphis and hoofed through their own 25-minute show at Dollywood. The summer of 2008 marked the company’s New York “tour,” with classes at Luigi’s, a performance in an off-Broadway theater, sightseeing and—of course—hobnobbing with Liza.

 Roach, who travels the world teaching the Luigi method, remembers the day Winters asked if he would come to Memphis. Her dancers couldn’t seem to focus on any warm-up she had tried, from ballet to jazz to modern. After taking a class at Luigi’s, Winters had realized the holistic and therapeutic approach of his method might work with her company. Roach agreed.

 “I was concerned about their range of mobility, but they were heartened by the set technique,” said Roach, who spent an entire week in Memphis. “They got the repetitions, which allowed them to learn and re-learn.”

 Many challenges remained. Most dancers had limited stamina, muscle weaknesses, and trouble jumping and transferring weight. Long before tendus or pliés, Winters concentrated on moving through space and creative movement, locomotion, and rhythm. Today, a lesson might draw from numerous traditional dance techniques as well as yoga, improvisation, or percussion study. In addition, some dancers could not take their eyes off the floor or were shy and withdrawn, unable to focus, or moody. Winters had to find a way to communicate with and encourage each dancer. Moving together, remembering choreography, spatial awareness—each hurdle was set particularly high.

 She has responded by setting her own developmental goals for each piece, whether technical or artistic. She completes the choreography first, then backtracks, determining which skills her dancers will need to make that choreography happen.

 “They’ve taught me to have more patience and more understanding of how to get through to students. I just fell in love with them, and I think the feeling is mutual.” —Francis Roach, Luigi’s Jazz Centre

And it does happen. From that first “Night Fever,” when parents thrilled to see all six dancers point their index fingers to the sky at the same time, Winters has filled the company’s repertory with technically challenging, mature choreography. “The Prayer” is a lyrical ballet incorporating sign language; Elvis’ “A Little Less Conversation” is a spicy jazz piece; “Canon in D” is based on classical ballet.

 Peter Barton, a New York City–based documentary filmmaker, features the company’s dance to West Side Story’s haunting “Somewhere” in his film Determined to Dance. As he cuts from interviews in which the dancers talk about their sometimes painful life experiences to their heartfelt dance, he almost defies viewers to make it through the video without sobbing.

  “There is a preconception [about people] with Down syndrome that they are not really sharp, but these dancers are able to put on their stage face and project confidence,” says Barton, who spent two summers filming and interviewing dancers and family members. “I wanted to focus on the trajectory of the struggle of mastery for them, to see how they work together and see what their secret is.”

 The secret is that Winters doesn’t believe in the limitations society has set for her dancers. “I wish I had a dime for everyone who’s said, ‘I didn’t know people with Down syndrome could do this,’ ” Nancy Thielemier says. “Darlene puts no limit on their abilities. If they’re whining or they don’t feel good, she says, ‘Too bad! Get out there!’ She inspires them to do their best.”

 Thielemier recalls the difficult days of Kenny’s birth, of the family members who questioned her decision to have the child, of the medical professionals who said, “Don’t expect much.” Today her son dances downstage center and confidently connects with the audience. He is a vital member of a loving, supportive dance team, follows a full weekly schedule of work and activities, and wants to be a weatherman. He can also look a waitress in the eye and order his own meal—something his mother did for him for years.

 While some Down syndrome individuals tend to duck their heads when they speak, Thielemier says, Winters makes the dancers look up when they speak to her. “It really defies description, all the good this has done,” she says.

 Winters has set a goal for audiences, as well: to open their eyes. “Seeing ‘disabled’ individuals doing something they never expected them to do—it’s like pulling down a wall,” she says.

 Each summer, Company d attends a two-week summer intensive at the Hutchison School in Memphis, a four-year college prep program for girls, assisted by students from the school’s Center for Excellence Leadership Institute. “I’m learning so much from them and their outlook on life,” Mary Aubrey Landrum, a Company d volunteer intern for four years, says. “If they mess up or forget a step, it doesn’t matter. They have such a positive attitude and are so willing to learn.”

 Company d has so touched her life that Landrum, an accomplished harpist, invited the dancers to perform during her solo in a senior concert recital in April. “They are working on a dance right now,” said Landrum last winter, admitting she anticipated that the dancers just might steal the show. “I am so excited—I will remember this forever.”

 Every time Company d performs at Hutchison, whether it’s a number from their repertoire, a work in progress, or even a section of their Luigi warm-up, it ends with a standing ovation. “Company d is very inspirational to watch as an audience member,” says Tracey Ford, director of Hutchison Center for Excellence. “They have a very high quality of work and you become very emotionally attached to the dancers.”

 Ford, who has worked in the Memphis arts community with Winters for years, has high praise for the artistic director. Winters not only works tirelessly with the Company d dancers and their families, Ford says, but is a wonderful liaison between master teachers in the arts community and the local special-needs population. The fact that Winters could convince someone of the caliber of Francis Roach to work with the company “speaks volumes about the quality of the program and the importance of what she’s doing.”

 “I think Darlene is a saint,” says Roach. “In the two and a half years I have known her, she is tireless, constantly thinking of what will be good for this company. She has an obsession to help, and I mean that in the very best way.”

 But Winters wants to talk only about her dancers. She tells of one man who danced for three years with his eyes shut, but now lifts his head and shines his beautiful blue eyes over the audience. Or how the dancers stood patiently and calmly at the beginning of one show when a technician messed up the music. How dancers who never said a peep now start conversations. How they walk with confidence into a new venue. How they have dreams of being cosmetologists, or chefs, or photographers.

 As a child Winters spent endless hours with one best friend. She had known the girl for eight years before she found out she had a sister with Down syndrome. But in Company d, no one is hiding.

 “Life is rough for these folks,” Barton says. “With Company d they are saying, ‘See me.’ They communicate through their dance. Lots of dancers strive to be abstract and show their bodies. Darlene lets Company d show their feelings, lets them be dramatic, lets their facial expressions speak.”

 “I want them to understand that they’re artists. They don’t just get audience response because they’re special-needs [dancers],” Winters says. “I’ve done my best to develop them to be appreciated for their abilities. When you see them dance, what you see are dancers.”

 To watch Peter Barton’s documentary Determined to Dance, visit blip.tv/file/2498724. Have tissues handy.

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Special thanks to Wendy Badman and photo by Wendy, LLC.

Photo by Wendy is featured on facebook, please tell you friends, family and students to “like” us!! Thanks!!

Here is the direct link : http://companies.to/photobywendy/

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Be sure to register at Active.com

Come join the fun!! Take some time to visit our display and demonstration tables. Enjoy our Display of Abilities, featuring the talents of many of our own young adults and children with Down syndrome. Visit with magicians and clowns, have your face or nails painted, and make some crafts at our multiple craft table. Last but not least, enter your tickets for our Gift Basket Door Prizes!!!!! Come on down to the pavillion area and for an extra $5.50, per person donation, choose one of the many meals prepared on site by Winner’s Circle Sports Grille with locations in Exton and Edgemont, PA, and enjoy our many snacks and refreshments. Most and best of all, Walk with your Buddy and promote the inclusion and awareness of People with Down syndrome in the community. We look forward to seeing you there!!!!!

Watch the PSA for the 2009 Buddy Walk!

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