Wednesday, December 17, 2008
Friday, November 14, 2008
The News About Jo Jo: Raising a Baby with Down Syndrome
One mom shares the experience of her daughter's Down syndrome diagnosisBy Hallie Levine Sklar, Babytalk
Parenting.com
Raising a baby with Down Syndrome, or any baby with special needs, doesn't have to be the hardship many people believe. Learn how one working mother and her husband coped with the shocking delivery room news that their first and only baby, a daughter named JoJo -- who happens to be the same age as Alaska Governor Sarah Palin's four-month-old son, Trig -- had Down Syndrome, and what their life is like today. (Hint: You'll be pleasantly surprised!)
Read the entire article here:
Thursday, November 13, 2008
A Leap of Love
Adoptions of Children With Down Syndrome Are on the Increase
By Michael Alison Chandler
Washington Post Staff Writer
Sunday, November 9, 2008; Page C01
Jonny and Madeleine, the eighth and ninth children in the Curtis family, were born 54 weeks apart but grew up in many ways like twins. Best friends from the beginning, they learned to walk and sound out words together. But Madeleine's development soon outpaced her older brother's.
Looking ahead, Barbara and Tripp Curtis worried that Jonny, who has Down syndrome, would be alone as his siblings grew up and left home. And so they adopted Jesse, Daniel and, finally, Justin. All three have Down syndrome.
Please go here to read the entire article:
http://www.washingtonpost.com/wp-dyn/content/article/2008/11/08/AR2008110802462.html?referrer=emailarticle
By Michael Alison Chandler
Washington Post Staff Writer
Sunday, November 9, 2008; Page C01
Jonny and Madeleine, the eighth and ninth children in the Curtis family, were born 54 weeks apart but grew up in many ways like twins. Best friends from the beginning, they learned to walk and sound out words together. But Madeleine's development soon outpaced her older brother's.
Looking ahead, Barbara and Tripp Curtis worried that Jonny, who has Down syndrome, would be alone as his siblings grew up and left home. And so they adopted Jesse, Daniel and, finally, Justin. All three have Down syndrome.
Please go here to read the entire article:
http://www.washingtonpost.com/wp-dyn/content/article/2008/11/08/AR2008110802462.html?referrer=emailarticle
Expecting Longer Lives With Greater Risk, Reward
Down Syndrome Generation First to Outlive Parents
By Fredrick Kunkle
Washington Post Staff Writer
Monday, November 10, 2008; Page B01
Like many people her age, Jennifer Holden wants to be on her own. But for the 20-year-old Springfield woman, crossing streets can be frightening. Keeping track of money is difficult. And fending for herself is challenging at times for a person who loves to read but has difficulty with novels above a fifth-grade level.
"A stranger could set a trap on me," she says between bites of a cheeseburger at a Wendy's. "Kidnap me."
Holden belongs to the first generation of people with Down syndrome who will probably outlive their parents. The life expectancy of people with Down syndrome has increased from about 25 years in 1983 to more than 50, thanks largely to medical advances. Although achieving independence has long been the goal for any person with a disability, increased life expectancy has made the goal more urgent now that the baby boomer generation is graying.
Please go here to read the entire article:
http://www.washingtonpost.com/wp-dyn/content/article/2008/11/09/AR2008110902189.html?referrer=emailarticle
By Fredrick Kunkle
Washington Post Staff Writer
Monday, November 10, 2008; Page B01
Like many people her age, Jennifer Holden wants to be on her own. But for the 20-year-old Springfield woman, crossing streets can be frightening. Keeping track of money is difficult. And fending for herself is challenging at times for a person who loves to read but has difficulty with novels above a fifth-grade level.
"A stranger could set a trap on me," she says between bites of a cheeseburger at a Wendy's. "Kidnap me."
Holden belongs to the first generation of people with Down syndrome who will probably outlive their parents. The life expectancy of people with Down syndrome has increased from about 25 years in 1983 to more than 50, thanks largely to medical advances. Although achieving independence has long been the goal for any person with a disability, increased life expectancy has made the goal more urgent now that the baby boomer generation is graying.
Please go here to read the entire article:
http://www.washingtonpost.com/wp-dyn/content/article/2008/11/09/AR2008110902189.html?referrer=emailarticle
Tuesday, September 23, 2008
I am Capable of More Than I Think I Am
All Things Considered,September 22, 2008 ·
by Gregg Rogers
"It is trisomy 21. It is Down syndrome."
Beyond those words I heard nothing, sitting in the obstetrician's office. The doctor was talking about my unborn daughter, and the results of an amniocentesis. I know there were words after that statement, but I don't remember them. I do remember returning home with my wife and crying on the sofa.
I distinctly remember saying, "I don't want this." I didn't want this situation. I didn't want this responsibility. I didn't want to become one of those parents — the parents of a child with a disability.
People told me, "If anyone can handle it, you can."
"Easy for you to say," I thought.
"God never gives you more than you can handle," they reassured me.
"Really? Then why do people have nervous breakdowns?"
"We'll help however we can," they said.
"Fine," I thought. "You have the kid with the developmental delay, and I'll help you out."
For months I was terrified. My wife, Lucy, and I now refer to the period of time leading up to my daughter's birth as "The Pit." We barely spoke to each other because we didn't know what to say. We simply suffered through each day, together, but feeling terribly alone. And then Genevieve was born.
She spent her first eight days in the neonatal intensive care unit at a regional medical center. On each of those eight days I made the 150-mile round trip to see her, because she was my daughter. I sat in a surgical gown in intensive care, holding her in a tangle of tubes and wires, singing the same songs I had sung to other daughters.
On the ninth day, she came home, and I began to realize that my feelings of fear and anxiety had changed in a way that no prenatal screening could ever have predicted.
I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time — beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.
Genevieve recently turned 3 and is doing very well for herself. She runs and climbs on everything and loves to wrestle with her two older sisters and her younger brother. She doesn't have a lot of spoken words yet, although her first full sentence turned out to be, "What's up with that?"
She does have over 100 signs that allow her to ask for strawberries, pizza or ice cream, or tell us when she wants to sleep, or play on her computer. She goes to a regular preschool three days a week and seems to know more people around town than I do. I laugh every day because of Genevieve.
On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in trisomy 21, Down syndrome. Now when I look at those beads, they simply remind me that I don't ever know as much as I think I do, but I'm always capable of more than I think I am.
Independently produced for All Things Considered by Jay Allison and Dan Gediman with John Gregory and Viki Merrick.
See and hear the original story here: http://www.npr.org/templates/story/story.php?storyId=94836671
Thursday, August 28, 2008
Difference is an Artist's Game
This film is an official selection of the Rappahannock Independent Film Festival 2008 (www.rifilmfestival.com). Clara's combination of an 8th grade English project (This I believe...essay) and a film project for Mrs. Dawson's Film making class results in Clara's take on society's labels and stereotypes.
Wednesday, August 20, 2008
Thursday, August 14, 2008
Wednesday, August 13, 2008
NPR on the R-word
Click HERE and HERE to listen to two NPR stories on the recent boycott of a movie that uses the R word.
Lennard J. Davis, professor of Disability Studies at the University of Illinois, Chicago
"Things are only funny if everyone laughs. If one group laughs at the expense of another we don't call that humor, we call that humiliation."
Please teach your children that the R word isn't funny.
Lennard J. Davis, professor of Disability Studies at the University of Illinois, Chicago
"Things are only funny if everyone laughs. If one group laughs at the expense of another we don't call that humor, we call that humiliation."
Please teach your children that the R word isn't funny.
Saturday, May 31, 2008
Friday, May 30, 2008
Wednesday, May 28, 2008
If People with Down Syndrome Ruled the World
I am not a fan of grouping individuals with Down syndrome, ever. I believe that our children are fabulously unique individuals, no more alike than any other children are. However, I ran across this article and laughed SO hard, it is TOTALLY my daughter. So, if I were to rewrite it, I would call it, "If My Adventurer Ruled the World". (Click here to see the original web site)
If People with Down Syndrome Ruled the World
Dennis McGuire, PhD
Adult Down Syndrome Center of Lutheran General Hospital
Park Ridge, Illinois
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.
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.
From the author:
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.
If People with Down Syndrome Ruled the World
Dennis McGuire, PhD
Adult Down Syndrome Center of Lutheran General Hospital
Park Ridge, Illinois
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.
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.
From the author:
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.
Monday, May 19, 2008
Sunday, April 20, 2008
Diagnosis: Normal syndrome
Dear medical professionals out there, it truly matters how a diagnosis is given. If all of us focused on the endless possibilities of what COULD go wrong, who among us would be strong enough to have children at all? Its OK to let a parent love what is good and right about their child and deal with the rest IF it happens (or doesn't happen!).
NORMAL SYNDROME
How (not) to give parents a pre-natal diagnosis:
I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call ... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome".
The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.
If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.
Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.
I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.
After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.
But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.
They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce. Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.
Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.
I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure. Termination is an option. Shall I book an appointment?
.... from a parent who received a diagnosis rather like this.~~~Bob Lincoln, author
NORMAL SYNDROME
How (not) to give parents a pre-natal diagnosis:
I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call ... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome".
The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.
If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.
Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.
I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.
After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.
But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.
They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce. Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.
Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.
I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure. Termination is an option. Shall I book an appointment?
.... from a parent who received a diagnosis rather like this.~~~Bob Lincoln, author
Friday, April 11, 2008
Memory Keeper's Daughter
The movie on Lifetime is tonight, Saturday April 12th! Click here to see a trailer and here to read more about it. Set your DVRs, and let's hope they make us proud.
Wednesday, April 9, 2008
Melissa Riggio
From the notice in the Down-syn list serv:It is with deep sadness that we have to tell you of the passing of Melissa Ann Riggio, 20-year old daughter of Steve Riggio (Barnes & Noble CEO) and his wife, Laura, and sister to Laura and Christina.
Melissa passed away peacefully this morning, Monday, April 7, at 6:00 a.m. at University Hospital of Columbia and Cornell in Manhattan.
She was surrounded by her parents, sisters, aunts and uncles, and cousins. There will be a funeral service on Friday in New Jersey. Details will be forthcoming.
As so many of you know, Melissa was diagnosed with leukemia last summer and since that time she fought long and hard to overcome the disease.
Last June, she graduated from Bernards High School in Bernardsville, New Jersey, where she was crowned Prom Queen.
Melissa was so grateful to the many people who reached out to offer their support by donating blood, platelets, and sending cards and letters.
Through it all, Melissa remained strong and optimistic. She was an inspiration to everyone who had the opportunity to know her.
Although Melissa was born with Down Syndrome, she lived a full and extraordinary life. Melissa worked at the YMCA in Bernardsville and recently talked about entering a post secondary program so that she could become a counselor at the YMCA. She loved to read and listen to music, and she loved to write. Melissa was a poet and songwriter. Melissa was taking voice, drama, and dance lessons as she also aspired to become a singer one day. Some of Melissa's songs were recorded by singer/songwriter, Rachel Fuller.
This is her web page http://www.riggio.net/index.htm
I Have Down Syndrome. Know Me Before You Judge Me. http://kids.nationalgeographic.com/Stories/PeoplePlaces/Downsyndrome
Download Melissa Riggio's Songs, Love is a PotionandThe Ring http://www.riggio.net/music.htm
How Melissa touched just one family's life http://momseatofpants.blogspot.com/2008/04/melissa-riggio.html
Tuesday, April 8, 2008
Giraffes Can't Dance
by Giles Andreae
Gerald was a tall giraffe
whose neck was long and slim.
But his knees were awfully crooked
and his legs were rather thin.
He was very good at standing still
and munching shoots off trees.
But when he tried to run around
he buckled at the knees.
Now every year in Africa
they hold the Jungle Dance,
where every single animal
turns up to skip and prance.
And this year when the day arrived
poor Gerald felt so sad,
because when it came to dancing
he was really very bad.
The warthogs started waltzing
and the rhinos rock'n'rolled.
The lions danced a tango
that was elegant and bold.
The chimps all did a cha-cha
with a very Latin feel,
and eight baboons then teamed up
for a splendid Scottish reel.
Gerald swallowed bravely
as he walked toward the floor.
But the lions saw him coming,
and they soon began to roar.
"Hey, look at clumsy Gerald,"
the animals all sneered.
"Giraffes can't dance, you silly fool!
Oh, Gerald, you're so weird!"
Gerald simply froze up.
He was rooted to the spot.
They're right, he thought. I'm useless.
Oh, I feel like such a clot.
So he crept off from the dance floor,
and he started walking home.
He'd never felt so sad before-
so sad and so alone.
Then he found a little clearing,
and he looked up at the sky.
"The moon can be so beautiful,'
he whispered with a sigh.
"Excuse me!" coughed a cricket
who'd seen Gerald earlier on.
"But sometimes when you're different
you just need a different song.
"Listen to the swaying grass
and listen to the trees.
To me the sweetest music
is the branches in the breeze.
So imagine that the lovely moon
is playing just for you-
everything makes music
if you really want it to."
With that, the cricket smiled
and picked up his violin.
Then Gerald felt his body
do the most amazing thing.
His hooves had started shuffling,
making circles on the ground.
His neck was gently swaying,
and his tail was swishing round.
He threw his legs out sideways,
and he swung them everywhere.
Then he did a backward somersault
and leapt up in the air.
Gerald felt so wonderful
his mouth was open wide.
"I am dancing! Yes, I'm dancing!
I AM DANCING!" Gerald cried.
Then, one by one, each animal
who'd been there at the dance
arrived while Gerald boogied on
and watched him, quite entranced.
They shouted, "It's a miracle!
We must be in a dream.
Gerald's the best dancer
that we've ever, ever seen!"
"How did you learn to dance like that?
Please, Gerald, tell us how."
But Gerald simply twirled around
and finished with a bow.
Then he raised his head and looked up
at the moon and the stars above.
"We all can dance," he said,
"when we find music that we love."
Its a book we read every night. It makes me think of all of my late sitting, late crawling, late walking, but amazing little dancers. But especially my Adventurer.
Gerald was a tall giraffe
whose neck was long and slim.
But his knees were awfully crooked
and his legs were rather thin.
He was very good at standing still
and munching shoots off trees.
But when he tried to run around
he buckled at the knees.
Now every year in Africa
they hold the Jungle Dance,
where every single animal
turns up to skip and prance.
And this year when the day arrived
poor Gerald felt so sad,
because when it came to dancing
he was really very bad.
The warthogs started waltzing
and the rhinos rock'n'rolled.
The lions danced a tango
that was elegant and bold.
The chimps all did a cha-cha
with a very Latin feel,
and eight baboons then teamed up
for a splendid Scottish reel.
Gerald swallowed bravely
as he walked toward the floor.
But the lions saw him coming,
and they soon began to roar.
"Hey, look at clumsy Gerald,"
the animals all sneered.
"Giraffes can't dance, you silly fool!
Oh, Gerald, you're so weird!"
Gerald simply froze up.
He was rooted to the spot.
They're right, he thought. I'm useless.
Oh, I feel like such a clot.
So he crept off from the dance floor,
and he started walking home.
He'd never felt so sad before-
so sad and so alone.
Then he found a little clearing,
and he looked up at the sky.
"The moon can be so beautiful,'
he whispered with a sigh.
"Excuse me!" coughed a cricket
who'd seen Gerald earlier on.
"But sometimes when you're different
you just need a different song.
"Listen to the swaying grass
and listen to the trees.
To me the sweetest music
is the branches in the breeze.
So imagine that the lovely moon
is playing just for you-
everything makes music
if you really want it to."
With that, the cricket smiled
and picked up his violin.
Then Gerald felt his body
do the most amazing thing.
His hooves had started shuffling,
making circles on the ground.
His neck was gently swaying,
and his tail was swishing round.
He threw his legs out sideways,
and he swung them everywhere.
Then he did a backward somersault
and leapt up in the air.
Gerald felt so wonderful
his mouth was open wide.
"I am dancing! Yes, I'm dancing!
I AM DANCING!" Gerald cried.
Then, one by one, each animal
who'd been there at the dance
arrived while Gerald boogied on
and watched him, quite entranced.
They shouted, "It's a miracle!
We must be in a dream.
Gerald's the best dancer
that we've ever, ever seen!"
"How did you learn to dance like that?
Please, Gerald, tell us how."
But Gerald simply twirled around
and finished with a bow.
Then he raised his head and looked up
at the moon and the stars above.
"We all can dance," he said,
"when we find music that we love."
Its a book we read every night. It makes me think of all of my late sitting, late crawling, late walking, but amazing little dancers. But especially my Adventurer.
Thursday, April 3, 2008
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