Awesome Video

This is a great video clip from the TV show The Dr's. It's heartwarming, educational for those just learning about Down syndrome, and I think it really shows how great life REALLY is with a family member with Down syndrome. Watch the video and be inspired, and share the video and help break the stereotype. They are more alike than different!

You can pause the music at the bottom

If People With Down Syndrome Ruled The World

I am reposting this from Smiles 4 Downs, check out her site, this is an article she posted today. It's great. Take the time to read it and pass it on. I loved it!

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This is probably one of the best articles that I have read by Dr. Dennis McGuire. It is humorous and very touching. Please share this story with your friends and family. Great view on the Down Syndrome community as a whole. This is a long one, but well worth the read….

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

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

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

Development of the
Adult Down Syndrome Center

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

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

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

What would happen if people with DS ruled the world?

If people with Down syndrome ruled the world:

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

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

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

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

People would be refreshingly honest and genuine.

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

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

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

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

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

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

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

Order and Structure would rule

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

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

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

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

* Schedules and calendars would be followed.

* Trains & planes would run on time.

* Lunch would be at 12:00. Dinner at 6:00.

* Work time would be work time.

* Vacation would be vacation.

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

But there is much, much more:

* People would be expected to keep their promises.

* Last minute changes would be strongly discouraged (if not considered rude and offensive).

* Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).

* Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).

* The “grunge look” would be out, way out.

* “Prep” (but not pretentious) would be very big.

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

* Repeating the same phrase or question

* Use of the terms “fun” and “cleaning” in the same sentence

* Closing doors or cabinets that are left ajar (even in someone else’s house)

* Arranging things until they are “Just so.”

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

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

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

Therefore, in the world of Down Syndrome:

* Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.

* Here and now would command a great deal more respect than it currently does.

* Stopping to smell the roses would not be just a cliché.

* Work would be revered, no matter what kind, from doing dishes to rocket science.

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

Therefore, if people with Down syndrome ran the world:

* Speed would be far less important than doing the job right.

* Work would be everyone’s right, not a privilege.

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

All instruction would include pictures to aid visual learners.

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

If people with Down syndrome ran the world:

* School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.

* Counselors would be able to use visual mediums to help solve problems.

What About News?

If people with Down syndrome ran the world:

* Weather would be the only essential news item

* News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?

What About Bad News?

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

What About “Behaviors”…

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

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

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

Therefore if people with DS ran the world:

* Anger would only be allowed in special sound proof rooms.

* Trained negotiators would be available to everyone to help deal with any conflicts.

* The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”

What About Self Expression?

* Art and music appreciation would be BIG.

* People would have time to work on paintings and other art projects.

* Acting and theatrical arts would be encouraged for all.

Dancing

* You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight … absolutely.”

* The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.

* People would be encouraged to get married several times to have more weddings for more music and dancing.

* Richard Simmons and John Travolta would be national heroes.

Music

* Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)

* Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)

* John Travolta would be the biggest star.

Television

* Classic TV hits would be very BIG and take up at least half the TV schedules.

* “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.

* Wrestling would be very Big.

* “Life Goes On” would also be very Big and replayed regularly.

Movies

* There would be fewer movies, but they would be replayed over and over.

* Movie theaters would allow people to talk out loud to tell what happens next.

No Secret Agents

* People would not hurt the feelings of others and they would also not lie or keep secrets.

* Therefore there probably would be no secret service agents, spies, or terrorists.

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

Welcome to Holland

WELCOME TO HOLLAND
by

Emily Perl Kingsley.

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 out 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....and 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 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.

Best Buddies

Check out this amazing organization and watch the short video. They are currently ranked 5th to receive $250,000 from the Pepsi Refresh Project to help allow more people with disabilities to attend their conference. It only takes a second, literally, to vote. Help them win. Click here to read more and vote.

Pause the music at the bottom before playing the video.

A Great Upcoming Video, and Book

Both amazing!

Both heart warming, while promoting awareness!

Pause the music at the bottom before watching the video.

The article attached below relates to the trailer above. I can't wait for it to be released.

Short film offers wisdom from artists with Down syndrome

World Down Syndrome Awareness Day

Tomorrow is a special day as well as an opportunity for me to promote awareness. Almost exactly 1 year ago today we found out our little Kaitlyn would be born with Trisomy 21 (Down syndrome). We have come along way since that day. It felt like the death of a child when we received the news. I reflect on those first days and weeks and it makes me quite emotional still. Over time we educated ourselves and got rid off all the ignorant misconceptions we had about Down syndrome. I new very little about it and most of what I did know or thought I knew was negative and inaccurate.

Today we are are at a much better place. We've had a few hurdles to over come but right now things are so NORMAL. She holds my heart. She like any other baby. She is meeting new milestones everyday and we rejoice in them with her. What I want everyone to know, especially those who are not personally affected by Ds is that life is great. Don't take an interest in Kaitlyn because you feel sorry for her. Do it because she is amazing, and pretty stinkin cute. The sky is the limit at what she can and will accomplish. We are so blessed to have her in our lives and we already are such better people because of it. God had a much greater plan. She as well as all others with Down syndrome are more alike then different.

I hit 18,000 hits on my blog yesterday. It still amazes me that people come and read what I have to say. I'm sure pictures of the adorable munchkins help (smile)! In honor of World Down Syndrome Awareness Day, I want to ask everyone a favor. Please donate $21 on 3.21.2010 to an orphan with Ds. I have pledged to help raise funds towards Valerie's adoption. She is a 5 month old beauty in Eastern Europe. If adopted early she could really benefit from early intervention. If not adopted at all she will face a life alone in an institution. That is were they are placed by age 5 and become no longer available for adoption. Money is tight for everyone right now, but if we all just pledged $21 it would add up so fast. We can change Valerie's life! You will find on the top left of my site a secure way to donate through Pay Pal. It goes directly to Valerie at Reece's Rainbow International Adoption Ministry, and its tax deductible.

Thank you for helping change a very special little life!

A Tug At My Heart (Please Read)

I've put a lot of thought into this post, it has taken me awhile to find the right words. I’m really not sure what this is I’m going through. I’m finding myself in a funk, wanting more?! It’s puzzling because my plate is quite full right now, but there is something going on inside that I have had a hard time putting my finger on, and no it is not the baby (smile). I have tried talking it through with my husband and girlfriends, I have prayed for direction, and done much self reflection. I’m exhausted! What could possibly be missing, my life is full…right?

What’s missing? This is what I have come up with…

• Time with friends (without children) would be really nice
• Dates with my husband, how I dream of those
• Time to scrapbook again, or cake decorating for fun, its been along time

But none of those quite seem right. I have prayed and all along God has answered. Reece's Rainbow International Orphan Ministry. It’s been in front of me for so long. I was introduced to it slowly, first before Christmas, there are buttons on a lot of my favorite blogs, some of them have actually adopted a child with Down syndrome (awesome). This ministry has been pulling at my heart for awhile now, and lately I can not get it out of my head, my HEART. It’s time to do something! (No we’re not planning on adopting, relax, for now anyway:).

Many of my followers are familiar with the ministry, but many are not. This is what you need to know. There are children with Down syndrome all over the world living in orphanages, there are 100’s just on RR website. There are also families here in the states who want to adopt these children. So you say, “What’s the problem?” It’s the cost. An average international adoption costs up to $30,000. Who has that money laying around? Not many people. In the mean time these children remain in orphanages with limited services, care, and love. And are you ready for the worst part, the part that keeps me up at night… when an orphan with Down syndrome reaches the age of 4 or 5 (it varies country to country) they are transferred to a mental institution, and this becomes their forever fate, they can no longer be on the adoption list, they are placed in metal crib, many left alone or placed in crowded rooms, not being loved. Many of them die, they don’t have access to medical care and therapy, and we know that many children with Ds have heart defects that require surgical repair, like my Katie, along with so many other needed services. It breaks my hearts!

So this is what I want to do. I have become a warrior through Reece's Rainbow for a little girl Valerie. She is only 5 months old. She is one of the youngest and if adopted early could benefit from early intervention. She still needs a forever family. I want to help raise the funds for her adoption as well as maybe even help find her a forever family. Who knows maybe adoption has been something pulling at your heart or maybe you know of a family would longs to adopt. Introduce them to Valerie or another child at Reece’s Rainbow. Since we know this is not the time to add anymore children to our family I want to help by raising funds. My hope is that this ministry speaks to many of you. Please pray about it and see if God moves your heart the way he has mine. Economic times are tough, I’m not going to go to my close family and friends asking for donations. Instead I’m hoping to team up with others. Maybe if we all do a little of something…a bake sale at our church, or a prayer request in the bulletin along with a special offering. Maybe a dress down day at work, or a donation can at our local store, maybe even a benefit dinner, or forgoing birthday presents and making a donation instead. The skies the limit. What is amazing about this cause is it can make a real difference to a real child and a real family. We really can make a difference. We can bring a child home.

This cause is special to me naturally because of Kaitlyn. Maybe there is a different cause that calls you and that’s okay. I just want to do my part and be a voice for this little girl and all the children at RR. There are many families out there already committed to a child who are desperately trying to bring their child home. If all goes well maybe we can help one of those families as well. I have so many ideas in my head and I welcome all of yours as well. Please contact me (jeneeross@comcast.net) if you want to get involved. I plan on sending out an email, as well as putting something on facebook, so if you hear of this several times I apologize. I’m excited!

Meet Valerie

Wow!!! What A Story!!!

Wow what a story!

Tom Brokaw reports on the progress of snowboarder Kevin Pearce, a likely Olympic contender in the halfpipe before a December training run accident nearly took his life.

Go here and watch the video!

My Feelings On The "R" Word

This is a portion of a letter written to Sarah Palin asking her to take full advantage of her platform and become an advocate and educator for Down syndrome and all intellectual and physical disabilities. The reason I am sharing it is because I feel it truly explains why we as a society really need to think before we speak, and more specifically why we need to remove the "R" word (retarded) from our vocabulary. I've been trying for a couple weeks now to find the words to write on this issue. I think the letter to Sarah Palin written by leaders of the Oz Squad hit the nail on the head. So with their permission I'm sharing a portion of the letter. Please read on, change your thinking, and become a voice and help end the use of the "R" word....

Everybody knows and agrees that the word "retarded" used in a clinical setting defines a group of individuals as having limited cognitive abilities. In this respect, the term carries similar effects as racial or sexual orientation categorizations, in that it invokes a specific class of individuals with immutable characteristics.

But what not everybody seems to realize is that the current, common definitions of the word "retarded" as stupid, wrong, ineffective... the catch-all for anything that is annoyingly deficient, are steeped in our cultural view of people with mental retardation.

So whether one is using the term as an insult or to raise laughs through satire, the speaker is tapping into our common cultural understanding and belief that people with mental retardation are characterized by those negative definitions listed above. The speaker references a group of individuals defined solely by their cognitive limitations, denying them their individual personalities, and by extension their essential humanity. He agrees that this group is inferior and worthy of our scorn. This use of the word "retarded" has become so deeply ingrained in our society that the user probably doesn’t even realize that he has done this.

Many people, when called out on their use of the word, insist that they meant no harm to the mentally retarded community, that their use of the word had nothing to do with this minority group. These people must be made aware that there is no separating the insult/joke from its basis for understanding it.

No one believes that Rahm Emanuel or Rush Limbaugh thought that they were insulting those with true mental retardation when they called people whose ideas they objected to "retarded." But we do believe that both men were making the point that their targets' ideas were of so little merit that they deserve to be grouped with an undesirable category of people. Both the direct target of the insult, and the class of people it refers to, are indisputably demeaned by such a slur. You cannot have one without the other.

Put a simpler way, if people with mental retardation were generally well-respected and thought highly of, the insult "retarded" would not exist.

Having the government remove the term retarded from the books, and having the medical community change the diagnosis terminology to "a person with intellectual disabilities," is not enough to eradicate the insult. The public must be made aware of how the insult relates to and hurts an entire group of people. This is not a word police PC thing, rather it is a matter of common decency.

Some argue that the insult "retarded" will simply be replaced by another word that is just as hurtful to the intellectually disabled community. But just because some group of the population will always turn clinical or descriptive terms into epithets does not mean that we should condone it. Such a standard would condone the use of virtually any racial, ethnic, or sexual orientation slur.

Thanks for reading, and please help Spread the Word to End the "R" Word.

Watch this video, it shows just how overused that word is in our society, and how so many people don't think before they talk!

Did or do you sign with your baby?

I am anxious to start signing with Kaitlyn. From what I've read children with Down syndrome tend to have delayed speech and problems with being understood. They often can comprehend what is being said and want to respond but have a difficult time expressing them self. Sign language hopefully will allow us to communicate with Katie sooner and help her be understood eliminating some of the frustration she might have when trying to express herself.

Do you sign with your child? I would love some pointer's and to hear of your experiences. Has it been helpful? What are some of the signs you started with? I am anxious to get the boys involved. Brady (5yrs) loves to sign the alphabet and I think he will love to teach his sister. I only know the basics so I have some learning to do!

I would love to hear from you!