Adventures in Down syndrome

Believe

2008-05-31T15:54:00.002-04:00

Belong

2008-05-31T15:14:00.002-04:00

A beautiful video with a very powerful message. This was put together by the former president of the Nova Scotia Down syndrome society, Renate Lindeman.

So you think you can dance...?

2008-05-30T12:16:00.000-04:00

If People with Down Syndrome Ruled the World

2008-05-28T14:27:00.006-04:00

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.

Down Syndrome Association of Cincinnati

2008-05-19T09:33:00.002-04:00

For more, click here.

Diagnosis: Normal syndrome

2008-04-20T22:44:00.003-04:00

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

Memory Keeper's Daughter

2008-04-11T21:44:00.002-04:00

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.

Melissa Riggio

2008-04-09T14:35:00.003-04:00

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

Giraffes Can't Dance

2008-04-08T21:55:00.001-04:00

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.

Memory Keeper's Daughter

2008-04-03T09:18:00.001-04:00

You know you have a child with special needs when...

2008-03-31T22:16:00.003-04:00

I found this on another blog and it made me smile.

* You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
* You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
* You fired at least 3 pediatricians and can teach your family doctor a thing or two.
* Everything is an educational opportunity instead of just having plain old fun.
* The clothes your infant wore last fall still fit her this fall.
* You view toys as “therapy”.
* You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that’s speech therapy), smear ketchup all over their high chair (that’s OT), or throw their toys (that’s PT).
* You also don’t mind if your child goes through the house tooting on a tin whistle.
* You compare ER’s instead of grocery stores.
* You have been told you are in “denial” by at least 3 medical or therapy professionals. This makes you laugh!
* You have the incredible sinking feeling that you’ve forgotten SOMETHING on those few days that you don’t have some sort of appointment somewhere!
* You get irritated when friends with healthy kids complain about ONE sleepless night when they’re child is ill.
* Your vocabulary consists of all the letters OT, PT, SP, ADS, VDS, IFSP, etc.
* You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with…you waited 8 months to get it…and besides, no one else will be there!
* Fighting and wrestling with siblings is considered PT.
* Speech therapy occurs in the tub with a sibling.
* You discuss your child’s oxygen saturations with other moms.
* When potty training is complete, you take out a full-page public notice in the Washington Post.
* The Doctors/Specialists/Hospitals etc. all know you by your name without referring to your chart.
* You keep a daily growth chart.
* You phone all your friends when your child sits up for the first time, at age two.
* With a big smile on your face you tell a stranger that your four year old child just started walking last week.
* Her medical file is several inches thick and growing.
* You never take a new day for granted.
* You have a new belief…that angels live with us on earth.

USDF, The Advocate, October 2007

Roadmap To Holland

2008-03-31T21:45:00.005-04:00

Road Map to Holland, by Jennifer Graf Groneberg, it here! I haven't read it yet, but I'll tell you all about it as soon as I do :) Click here to read the beautiful story of the cover photo.

Movie

2008-03-31T13:15:00.009-04:00

The novel The Memory Keeper's Daughter has been made into a movie. It will air on Lifetime April 12th at 9pm et/pt.

The birth of a child should be the happiest moment in a couple's life. But when a doctor's wife has twins, one of whom has Down syndrome, this physician makes the difficult decision to send one of his babies away. An attending nurse discovers his plan and intervenes, putting into motion events that will haunt the doc, his wife and his son for the next 20 years. This all-star movie features Dermot Mulroney ("The Wedding Date"), Gretchen Mol ("3:10 to Yuma") and two-time Oscar nominee Emily Watson ("Angela's Ashes"). Based... More

Click here to read chapter one of the novel written by Kim Edwards.

Shine

2008-03-31T08:50:00.005-04:00

SHINE

Sometimes I see you stuck
For such a long time
A daily nothing new
Pretend I don't mind
With lists of things you'll never do
Until somehow you do
And you do -- you do -- you shine
The days and months and years,
they run together
Is it just one day? Or is this forever?
You've taught me in your lifetime
More than I'd learned in mine
And you do, you do, you shine
Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine
I'm so glad you are mine
And you'll shine in your own time
Well, maybe I'm too close to see you clearly
Or is it now my role to simply believe?
You're just one of those mysteries
That may never be solved in time
But you do -- you do -- you shine
And Sammy will do what Sammy will do when Sammy is ready to do it
And Trevor will do what Trevor will do when Trevor is ready to do it
And Lucy will do what Lucy will do when Lucy is ready to do it
And they'll do it in their own time
Yeah, they'll Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
I'm so glad you are mine
And you'll shine, and you shine

Signing Time ©2004 All rights reserved. Lyrics by Rachel de Azevedo Coleman. Music by Rachel de Azevedo Coleman & Lex de Azevedo.
© 2004 Two Little Hands Productions, LLC P.O. Box 581037 Salt Lake City, UT 84158 • tel: 801.533.0444 • fax: 801.880.5151 • sales@signingtime.com

This song is page 12 on the title link above

Our children will do what our children will we when they're ready to do it. In their own time, they'll shine.

Gifts

2008-03-30T16:30:00.002-04:00

The second volume of Gifts will include stories about individuals with Down syndrome written by a wide variety of individuals, including:

family members (such as parents, siblings, grandparents, and other family members)
friends (such as neighbors, babysitters, and other associates)
professionals (such as teachers, doctors and nurses, and therapists)

**PLEASE NOTE** Most of the stories in the first volume of Gifts are mothers' accounts of adjusting to their child's diagnosis. While similar stories will be considered for inclusion in the second volume, our primary purpose is to feature stories that offer other perspectives and experiences. We are especially interested in stories about school-age children, adolescents, and adults.

Please write about one of the following gifts that the individual has brought into your life:

PEACE: Describe how this individual exemplifies healthy acceptance of self, of others, and of life in general. How has he or she helped you to make peace with the circumstances in your life?

COURAGE: Describe how this individual has shown courage in the face of difficulty. What has he or she taught you about meeting life's challenges?

FRIENDSHIP: Describe what this individual has taught you about being a true friend. How does he or she exemplify the values of kindness, cooperation, and/or trust?

AWARENESS: Describe how this individual has opened your eyes. As a result of your relationship with him or her, what truths do you now understand? What beauties can you now see?

JOY: Describe how this individual brightens your days. How has he or she brought love, laughter, and/or happiness into your life?

If you'd like to submit a story, please follow these guidelines:

--Your story should describe how an individual with Down syndrome has enriched your life. (You can write about more than one individual in your story).

--Your story must be unpublished, or if it has been published you must own the full rights to the piece

--Your story should contain a clear main idea supported by examples, and should employ creative writing techniques such as the use of descriptive language, symbolism and imagery, and/or dialogue. Your submission should have a descriptive title, an engaging beginning, and a concise, memorable ending.

--Compose your story in a plain, 12-pt. font using a word processing program. Single space your text. Leave an empty line between paragraphs; do not indent or use any tabs. No handwritten submissions will be accepted.

--Submissions must be between 500 and 2000 words in length (1-4 single-spaced pages).

--Include the following information in the upper left corner of the first page of your story: Full name, street address, phone number, email address, story title, and word count.

-Do not send your file as an attachment. Copy your entire file and paste it into the body of an email. Put your last name and the title of your story in the email subject line, like this: mylastname_mystorytitle.

--Send the email to giftsds2@segullah.org.

Submission Deadline: June 1, 2008
You will be notified through email regarding your submission’s status by January 1, 2009.

Welcome to Holland

2008-03-29T16:33:00.000-04:00

This amazing essay was written by Emily Pearl Kingsly and is available on the NDSC web site, just click the title link above. I read this essay shortly after my daughter was born. I recall a feeling of calmness after reading it, finally replacing that sense of panic and pain. For the first time I felt like the world wasn't actually ending. It was the first time I was able to move beyond shock and anger and think about the good things that were to come, the great things, the joyful things. I remember having a feint sense that a real Adventure was about to begin. Since that day I've never looked back. Life with our Adventurer has had no regrets!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland"."Holland?!?" you say, "What do you mean "Holland"???

I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Myths & Truths

2008-03-28T16:32:00.001-04:00

The deal with Down syndrome is that there is a TON of incorrect information floating around out there. Here are a few Myths & Truths from the National Down Syndrome Society.

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, Down syndrome affects more than 350,000 people in the United States.
Us: I think it might be more rare that she has red hair!

Myth: Most children with Down syndrome are born to older parents.
Truth: Eighty percent of children born with Down syndrome are born to women younger than 35-years-old. However, the incidence of births of children with Down syndrome increases with the age of the mother.
Us: We were both 26.

Myth: People with Down syndrome are severely retarded.
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of retardation. Children with Down syndrome are definitely educable and educators and researchers are still discovering the full educational potential of people with Down syndrome.
Us: Our Adventurer actually is testing low, but we're all pretty sure that its just because she can't talk yet, because we all know she's super smart! I know her receptive language is massive, she understands everything we say to her. The low tone muscles in her mouth just make it hard for her to talk to us. Her test scores will soar when she learns to speak.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social and recreational activities of the community. They are integrated into the regular education system, and take part in sports, camping, music, art programs and all the other activities of their communities. In addition, they are socializing with people with and without disabilities, and as adults are obtaining employment and living in group homes and other independent housing arrangements.
Us: Well, obviously she's at home with us! I couldn't imagine it any other way!

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.
Us: Almost every county has an association, there are at least two national groups, and our biggest supporters have been our schools.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The degree of mainstreaming is based in the abilities of the individual; but the trend is for full inclusion in the social and educational life of the community.
Us: We'll do whatever she needs, whatever it proves to be. She will thrive where she is happiest and she'll be happiest where she's thriving.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small and medium sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
Us: I'm thinking, um, Broadway?! You should see this kid dance!

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
Us: She has extremes like any toddler. She is a very huggy, kissy, lovey, happy girl who happens to have a serious stubborn streak.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Women with Down syndrome can and do have children, but there is a 50 percent chance that their child will have Down syndrome. Men with Down syndrome are believed to be sterile, with only one documented instance of a male with Down syndrome who has fathered a child.
Us: Did you see the couple get married on TV last year?

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
Us: Would we cure her if we could? That's a really hard one. Definitely we'd love to cure the health risks, like her early heart issues. Her genes make her who she is though. We've never wavered on whether or not we've wanted her. We can't imagine life without her. And the only way to get exactly HER was to get exactly those genes, red hair, blue eyes, freckles, and an extra 21st chromosome. So I'll take it!

Meet My Adventurer

2008-03-28T16:31:00.001-04:00

This is my Adventurer. If you've read down this far, its probably time to introduce you.

This is a letter I wrote to her on her 5th birthday. Maybe you'll see bits of your Adventurer in her? I hope it will give hope, honest-real-hope, to those brand new parents out there. I hope it shows you that kids with Down syndrome are kids, just regular kids. And that's the best thing they can be. Just kids.

* You were the very first grandchild on both sides of your family. Everyone was VERY excited about your arrival. 5 years ago the delivery waiting room was packed with family and friends waiting to meet you.

* You gave everyone a huge shock when you were born. You were having trouble breathing and you weren't very active. Lots and lots of wonderful doctors and nurses rushed into Mommy's room to help you. There was a very loud alarm that kept going off. Mommy and Daddy were scared. But soon they told us that you were OK. That made us happy. Then they told us that you had Down syndrome. We weren't sure what that meant, but something kept Mommy calm and told her that it would be OK. (And it has!)

* The very next day while Mommy was in the NICU holding you, a wonderful doctor came in. He needed to check your heart, and Mommy was sad to have to put you back in your bed for the test. But this wonderful doctor said, "Oh no, she'll be much calmer in her mother's arms. You hold her while we check her heart." And that's how it happened that you were snuggled asleep in my arms when I learned that your heart was broken, very broken. Without open heart surgery you wouldn't live very long.

* Your first months were hard but happy. You had a very hard time eating because it was too hard on your heart. We had LOTS and LOTS of doctors appointments. But you were such a happy baby, and people fell in love with your smile and red hair wherever you went.

* In June of your first year we took you to Philadelphia to have your heart fixed. That was one tough week. Mommy and Daddy had to face the terrible thought of coming home without our Adventurer. Everyone who loved you was in that waiting room waiting to hear that you were OK. And you were, you are an AMAZING trooper and did a fantastic job. One day I'll tell you about all of the things you went through that week. But not today. Today, know that you have a perfect new heart. All of your doctors say that it couldn't have gone any better.

* Now at the age of 5, you still have that awesome (unexplained) red hair and your happy blue eyes. But its not your hair or your eyes that stop people anymore, its your smile. You are such a happy little creature. You wave to passerbys, you hug strangers, you make friends wherever you go. You leave a little trail of smiles behind you. I love that about you. (Though some day soon we'll have to talk about how you happily pat strangers on the bottom. That one's not so OK)

* I am so proud of all that you have accomplished. You have worked so hard for everything you've done, sitting, crawling, walking, and now talking. But there is no doubt in my mind that you will accomplish whatever you set your mind on. While things are hard for you, you happen to also be amazingly stubborn. You don't give up. You will talk our ears off some day, I know you will.

* You learn your world through observing and then doing. Sometimes that leads you to do funny things like try to nurse your baby dolls, and not so funny things like shaving your face (ouch) or carrying your baby sister (you sit in time out for that almost every week).

* You love honestly, totally, and unconditionally. You love SO many people, but especially your little sister. You two are very special friends.

* Sometimes you get your feelings hurt. It especially makes you sad when people are hurtful to you or don't want to play with you. That makes you cry and cry. And sometimes you get mad and then you hit and bite and push. But we're woking on that.

* You love to take pictures. You walk around the house and happily snap away at eveything you see. I have a computer full of pictures of our rug, furniture, the TV, our pantry. Anything! I keep them all because I love to see the world as you see it.

* You play with your Little People and doll house every single day, usually first thing each day (you are a creature of habit and routine). You like to line them up and read them books. You will not leave for school until you've said hello to your basket of Little People.

* You LOVE school, you love your teachers, aids, and therapists, and you're learning to love your friends. They call you the Kindergarten Rock Star because you wave to all of the kindergarteners that you pass in the halls. And now they all know your name and claim you as a friend even though you've never actually met any of them.

* You love music and watching you dance makes me happy. You dance without a care in the world.

* You like TV way too much. You happen to hate most foods and would happily live off Pediasure if we let you. And if you nap you wake up a total grouch. But I can live with all of that.

* This week you celebrate your 5th birthday, but its also the week that you get the gift of "you words". Your speaking device is in and you get to start using it at school this week. I think you're going to love pressing all of those buttons (as will your sister) and I can't wait to hear what you have to say. This is your year, babe.

Happy 5th Birthday, little Adventurer!! We love you!!

Who am I?

2008-03-26T16:35:00.000-04:00

Hi. I am a parent. Probably just like you.

5 years go I was expecting my first child. I was very young, energetic, excited, and maybe just a little naive. Within about 5 minutes of giving birth, a team of neonatologists told me that my newborn had Down syndrome. I had no clue what that meant, but I think I knew our Adventure had begun.

My husband and I spent countless hours in those hectic first days not only trying to figure out how to be a parent to a baby, but how to parent a baby who has Down syndrome. We asked people, we wrote groups, we searched web sites, we sent off for packets of information, we read books. We were starving for information. We knew it was out there in numerous different places, we just had to find it.

It took us awhile to realize that all we really needed to do was hold our baby, hug her, kiss her, and love her. The rest would come in its own time. So that's what we did. We raised her just like we would eventually raise her three sisters, just like any other baby, like any other child. And over the next five years we slowly began to accumulate all of that helpful information. Information that we realize might help other new parents just starting out on their own adventure.

So, we decided that it is time. Time to share our Adventure. Time to gather all of the books, the links, and the web sites that I've gathered in the last 5 years and put them somewhere useful. Somewhere where someone like you might find them. That's what this site hopes to be, a gathering place, a starting point.

Please keep in mind that I am NOT a professional. Well, a professional mom I guess...I cannot verify all of the information on the web. I didn't write any of it. I can't make you any promises. But I'll do my best! I'll share my stories. I'll share my experiences. I'll share our adventures. And I'll tell you all about my Little Adventurer. I hope you'll tell me about yours.

And please, please leave me a comment if you have other information that might be great to share! I'd love to know about your Adventures!

Welcome to the Adventure

2008-03-25T16:36:00.000-04:00

Does someone you love happen to have Down syndrome? Well then,

Welcome to the Adventure!

We're glad you've joined us! We hope you enjoy your adventure! We've been adventuring through the world of Down syndrome for five years now, and we've loved (almost!) every minute of it. We wouldn't go back and change a thing.

If you are an expecting parent, we hope to calm your fears, we felt panicky once, too. If you are a new parent, we hope to share our experience, we felt lost once, too. And if you are an experienced parent, well leave us a comment and help us out here! :)

Please visit often to find links to support groups, events, activities, pictures, stories, and so much more. Click away and explore all of the links to the right. We're a brand new site, so hopefully there will be something new each time you stop by!

Leave a comment and let us know what's going on in your adventure! Do you have an event planned? A local support group? A great story we should all hear? Advocacy advice? News on current policy? We'd love to know about it!