MOSAIC MOMENTS

As you all know I have been crazy busy planning for our upcoming conference! I wanted to give y’all some important info so you don’t miss out. 

First of all, Next Friday, June 19th is the deadline for reserving your hotel room. We got a great room block at the Sheraton Cincinnati North Hotel & Indoor Water Resort. It is only $105 per night and for $12 per person you can enter the water park. You can book your hotel by going to our website. 

The conference registration deadline is Friday, June 26. After this, the fees will increase. You can register at our website.

Finally, please see below our press release. If you have a blog or an email list, please post this information for others to see. We are very excited to bring this to everyone and we would hate for anyone who would benefit from this conference to miss out!

See you in just a couple of weeks in Cincinnati!!

 
Keynote Speaker Congresswoman Cathy McMorris Rogers with husband and newborn son w/DS,  Cole

FOR IMMEDIATE RELEASE-June 11, 2009

Parents of children with Down syndrome (DS) are universally concerned about the wellbeing of their child’s health, future, and ability to connect with other DS families.  The Down Syndrome Association of Greater Cincinnati (DSAGC) hosts “Building Bridges for Down Syndrome”: the fourth biennial research and awareness conference presented by the International Mosaic Down Syndrome Association (IMDSA).

The term Down syndrome (DS) was named after Dr. Langdon Down, a British doctor who first described the condition in 1887.  This year marks the 50^th Anniversary of the discovery of the extra 21^st chromosome that causes Down syndrome.  DS is a genetic condition that occurs in one in every eight-hundred (800) births.  There are four types of Down syndrome:  Trisomy-21, Translocation, Mosaic, and Mosaic-Translocation. 

The Down syndrome community has leapt many hurdles in paving the way for future generations, but there is still a lot of work to do.  The attendees of this biennial research and awareness conference are empowered with information, hope for the future of all individuals with DS, and are given the opportunity to participate in various research studies being conducted onsite during the conference.  Teens and adults with DS, along with their siblings, will learn everything from how to manage a budget to relationships and friendships in the “Teen and Adult Conference.”  Children ages 2-12 with DS along with their siblings, will learn a variety of subjects: Acting and Puppetry to Bullying to Stranger Danger in the “Kid Konference.”  Students interested in professional careers pertaining to DS will supervise these youngsters; giving them a better understanding of what DS really means for these individuals.  Together, families and professionals will enjoy the “Friday Night Family Reunion & Silent Auction” with entertainment from The Amazing Portable Circus and self-advocates Sujeet Desai, Tim Colvin, and Casey Morton.

Some attendees of the 2007 conference held in Richmond, VA said, “At the IMDSA’s Conference, there’s a sense of family the moment you step through the doors, everyone is welcoming.  I’ve learned so many things from all the speakers!” 

Join IMDSA and DSAGC Friday, July 10 through Sunday, July 12 at the Sheraton Cincinnati North Hotel and Indoor Water Resort in Sharonville, Ohio for a fully scheduled weekend of information, family fun, socialization, and entertainment by Sujeet Desai, Dan Kulp, Tim Colvin, and Casey Morton.  Over 30 experts will discuss various topics that will beneficial to the betterment of all families of children and adults with DS.  This is a life-span conference with topics pertaining to all ages of people with DS.  Researchers and professionals will also benefit greatly by attending.  There will be many great activities, workshops, and sharing of information.  A sure highlight of the weekend will be the “Family Awards and Celebration Banquet and Dance” with self-advocate Jennifer Katz and comedian/musician Dan Kulp. 

Reservations are filling fast and space is limited, so register and reserve your spot today!  For more information on how to register, visit www.imdsa.org

 # # #

The International Mosaic Down Syndrome Association (IMDSA) provides support, information, and research to any family, individual, or professional whose life has been affected by mosaic Down syndrome. Its Research & Awareness Conference provides support, information and research to all forms of Down syndrome.

Contact:

Kristy Colvin

IMDSA President

Email: president@imdsa.org

Toll free:  1-888-MDS-LINK

Web:  www.imdsa.org

In 2007, International Mosaic Down Syndrome Association was approached by the writer/producer of the movie Mr. Blue Sky. Mr. Blue Sky is a wonderful movie about three children (2 girls and 1 boy) who grow up together and face the obstacles that most children grow up with. One of the girls in this movie has Down syndrome.

In the first of the movie, the boy’s mother kills herself. However we don’t really know why until the end of the movie. Because of this, the boy’s father (played by Home Improvement/Family Feud- Richard Karn) becomes an alcoholic.

As they grow up, the boy and the girl (without Ds) (played by Mary Kate Schellhardt) start dating but they really have too many differences to make it together. Then, the boy (played by the late Chaney Kley) winds up falling in love with the girl with Ds (played by Ashley Wolfe) and despite a lot of contriversy they wind up getting married.

IMDSA has been a major supporter of this movie from the beginning of its release. Although many feel as though this is unrealistic, we at IMDSA know that it is very possible for individuals with Down syndrome to marry individuals without Down syndrome because it happens within our community of mosaic Down syndrome quite often. (just ask Casey and Jennifer ) 

You can purchase this DVD and see trailers of the movie by clicking here.

So….. our BIG NEWS  for the day.

I just got a message from Tom Lee-the writer/producer of Mr. Blue Sky

Kareem Dale, the Special Assistant to US President Obama for Disability Policy will be traveling to Serbia on June 10th. The living conditions for people with Down syndrome in Serbia is horrible with the life expectancy of these individuals only reaching 10 years old. It is because of the attitudes of those with disabilities that these individuals are placed in institutions with deplorable conditions and left to die.

It is Mr. Dale’s hope that by showing this movie to the government officials in Serbia, perspectives will change. They will see that individuals with Down syndrome are just like everyone else. They can grow up to be wonderful members of the society and add great value to their communities.

Our movie is truly making the difference that it was created for! To show everyone that people with Down syndrome have the same hopes, the same dreams, the same ambitions and with acceptance, they can reach those dreams and goals! It is just a matter of letting them do what everyone else does and not holding them back from all the can accomplish!

This is a huge step in the right direction and I pray that the government of Serbia can change their perspectives, even just a little, and realize that people with Down syndrome are PEOPLE!

I know that it has been a while since I have posted a blog and I apologize to my devoted readers for my lack of writing. I have been incredibly busy with the planning of our Down syndrome Research & Awareness Conference and just have not had the time to write any more. Today, I announced our schedule for the main conference and we should have that on our site in a few days. Within a few weeks we should have our Kid Konference and Youth Conference schedules ready to go and I will publish them then.

If you have not yet registered for the conference in Cincinnati, time is running out!

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Tonight is the night! We have been waiting about a year for this day to arrive and it is finally here! Tonight at 10pm EST on Mystery Diagnosis we will have a small part of telling others about mosaic Down syndrome! This is a huge step for International Mosaic Down Syndrome Association as we will be able to reach so many more families whose children have mosaic Down syndrome and do not know that we are here to provide them with the support, information and research that we work so hard to provide to everyone!

Special Thanks goes to Holly Hannum for telling her daughter, Hannah Hannum’s story of being diagnosed with Myelodysplastic syndrome.(MDS) and later mosaic Down syndrome (mDs). Also, special thanks to Sue Johnson for offering her daughter Isabella to play the part of young Hannah! Not many times on Mystery Diagnosis do you get the opportunity to have 2 individuals with the same diagnosis and both were diagnosed later in life. These families did a great job of telling the story and if there is anything left out we will totally leave that in the hands of editing at the Discovery Health Channel.

If you would like to discuss this story after the show, I will be on Twitter (if I can figure it out enough! lol) You can find me on twitter by just clicking the box to the left of this post that says “follow” on Twitter.  To find out more and read more stories look below.

On April 6, 2009 the American station, Discovery Health, highlights one of our families’ stories on Mystery Diagnosis. Hannah Hannum is one of thousands of individuals with mosaic Down syndrome who was diagnosed later in life.

The average age for individuals to be diagnosed with mosaic Down syndrome is 1-4 years of age. The most common reason for this late diagnosis is the lack of knowledge in the medical field on this rare form of Down syndrome. However, many individuals can go undiagnosed up into adulthood and there are still thousands who never receive a diagnosis.

For more information on mosaic Down syndrome please visit our FAQ’s of MDS

If you feel that you or a loved one may have mosaic Down syndrome, please contact us and we will be happy to answer your questions.

We invite you to meet some of our families who have received this diagnosis later in life.

Meet Hannah diagnosed at age 3*

Meet Isabella diagnosed at age 10 months*

Meet Ryan diagnosed at age 3

Meet Allison diagnosed at age 5

Meet Tim diagnosed at age 2

Meet Christina diagnosed at age 25

Meet Rachel diagnosed at age 6 months

Meet Emily diagnosed at age 18 months

Meet Aidan diagnosed at age 2

*featured on Mystery Diagnosis

International Mosaic Down Syndrome Association provides support, information and research to all individuals and families touched by mosaic Down syndrome. IMDSA is a nonprofit organization, and is dependent completely upon generous donations to continue its mission of helping families and individuals with MDS. All donations are tax-deductible to the fullest extent of the law.

When you are told that your child has Down syndrome or mosaic Down syndrome you immediately form an image in your mind. It could be a child you saw in school or down the street from your house that had special needs. Maybe you saw a TV show or movie about Down syndrome and that was your image. Or, maybe you had some medical background and you thought about all that you had read up on the subject. Whatever it was, I think everyone does form an image, and in most cases you discover that that image in your mind was completely opposite of the person your child has become.

For me, I imagined Scott. Scott was a boy in my elementary school who had some sort of delay that impaired his ability to communicate articulately and he had braces on his legs that clanged when he walked. Scott was unable to learn the way my other classmates learned and he invariably could not close his mouth completely which was unsightly during lunch. But these were not the things that bothered me about Scott at all. What bothered me is that his parents dressed him in black dress slacks, a white button up shirt complete with a plastic pocket protector for his pens, black dress shoes and black-framed eye glasses that slid down his nose despite the large roll of tape fastened to the middle. To me and my classmates, Scott was different because he dressed differently than the rest of us. If it were not for his clothes, we probably would have accepted him much easier.

So, my first thought, silly as it may sound, was that Tim would never dress differently than his peers!

But I know that many had other thoughts in their mind. Other fears that were unfounded later on. So, today, please share what those fears were. What did you worry about after you were told your child had Down syndrome or mosaic Down syndrome and what made you realize that those concerns were only because of the image you had formed in your mind?

As parents of children with Down syndrome or mosaic Down syndrome we often worry about so many things when they are first diagnosed. Yesterday, I asked what your biggest concern was when your child was first diagnosed. Most of the comments on this question were united in that they worried more about themselves instead of their child’s condition. I thought that was an interesting take on things, but not at all wrong!

When you first have a child, any child, your whole entire life turns around! All of the sudden you are completely responsible for this tiny life and your parenting instincts come into play. However, when you have never had a child before, this can be a very scary experience and it really doesn’t matter if they child has Down syndrome or not! In these instances from our readers these children were their first born. (to the best of my knowledge) So, of course they were worried about how having this child was going to change their life! And, when you add “Dr. I have bad news” into the equation, you are more than likely going to worry all the more! You worry about how it is going to affect your lifestyle. I think the biggest thing that comes to mind is that you wonder if you will have to make changes to the way you live. The answer is in some ways Yes and in some ways No. 

Yes, because you will find that when you have a child, any child, you can no longer jump up at 11pm and say, “Hey, lets go out!” Because with any child, every trip is a planned process of packing half their life into a diaper bag, and still planning around naps, feeding, sickness, weather, etc. And, yes, your life does change when you have a child with any special needs, because you do a few things differently than you would a child without special needs. You may have more doctor appointments. Your child may need therapy to help with developmental delays. You wind up learning a whole new language that only other parents of children with special needs understands! You almost always have a medical degree equivalent to at least an MD, just without the shiny certificate hanging on the wall. Instead, your shiny certificate is that beautiful picture painted, drawn, colored or scribbled that adorns your refrigerator door.

And then, the answer is also No. No because you learn that Life Goes On! And, because no matter what, your child is a child first! Your child will still be mischievous and get into trouble even though they knew better to do what ever it was they ventured out to do. Your child will still smile and laugh and love you unconditionally just like any other child. Your child will frustrate you, worry you, scare you, make you happy, make you proud, and make you wonder what you ever did without them!

I have five sons. Each are a challenge in their own way. And, each have made me angry, embarrassed, sad, frustrated, happy, and extremely proud. 

Is it different to have a child with Down syndrome or mosaic Down syndrome compared to having a child without extra chromosomes? Yes! It is different for sure! But different does not mean worse!

Last night, on The Tonight Show with Jay Leno, US President Barak Obama insulted millions of people throughout the world when comparing his poor bowling skills to those of the Special Olympics athletes.

Obama told host Jay Leno that his bowling score, with practice, had risen to 129.

“That’s very good, Mr. President,” Leno deadpanned.

It’s “like the Special Olympics or something,” the president replied.

The problem is, the majority of Special Olympic Athletes bowl far better than Obama’s measly 129 score. They are hard working athletes just like any Olympic athlete is and they take their sport just a seriously as any athlete does. 

A White House spokesman said the remark was not intended to disparage Special Olympics athletes, who have intellectual disabilities.

The president “thinks the Special Olympics is a wonderful program that gives an opportunity for people with disabilities from around the world,” said White House deputy press secretary Bill Burton.

The Special Olympics CEO, Tim Shriver said that Obama called him and “expressed his disappointment and he apologized I think in a way that was very moving. He expressed that he didn’t intend to humiliate this population, certainly did not want to embarrass or give anybody any more reason for pain or, just, you know, kind of, suffering I would say.”

During a Good Morning America interview, Tim Shriver said “Well I think it’s important to see that words hurt and words do matter, and these words that in some respect can be seen as humiliating or a put-down to people with special needs do cause pain and they do result in stereotypes. They do result in behavior that is neglectful and almost oppressive of people with special needs. This kind of language needs to be a teachable moment I think for our country. I would hope every parent who is at home this morning watching this show  could turn to their children and say this is a chance for us to recognize that when we talk about Special Olympics, when we talk about people with special needs, let’s make sure we talk about it in an affirming way.”

When people say things, no matter what the words or who it is about, this is something that is in their mind in the first place. Obama, no matter how hard he tries to back pedal his remarks, obviously views people in the Special Olympics as less than him. He obviously believes that people with special needs have disabilities instead of Abilities. Obama is sadly mistaken on the abilities of those with special needs-especially when it comes to bowling. But what is even more disturbing is when he goes home tonight to his two little girls, who are in the midst of all this whirlwind of celebrity status, he will continue on with his private views of those with special needs and continue to teach his daughters that these people-the ones who learn differently-are people less than them, that it is OK to make these people be the brunt of their jokes-as long as you don’t do it publicly.

Comments like those made by Obama are not “missteps” or “blunders”. Comments do not suddenly come from your mouth if they were not in your head in the first place. And when a comment comes from a powerful man that is leading a nation, what kind of example does that lead for this country and all the other countries throughout the world?

Mrs. Whitehouse posted a comment on a past article that I wrote concerning getting a proper diagnosis of mosaic Down syndrome. 

Her question was a good one and one that I see quite often. She said her son was diagnosed with mosaic Down syndrome last year after years of looking for a diagnosis. She stated that the typical lifespan of a person with Down syndrome is 55 years old and she wanted to know if this applied to those with mosaic Down syndrome as well.

Because this is such a good question and one that needs to be addressed in extent, I thought it would be much better for me to address the issue here. So, I am taking a day off on telling you about the Conference Presenters we are having at  our Cincinnati conference in July to answer this question.

It is important to remember that no one dies from having Down syndrome or mosaic Down syndrome. People can die from complications surrounding health problems that can sometimes be present in those with Down syndrome such as a heart defect, thyroid disease, or digestive issues just to name a few.

However, right now, in 2009, we are looking at research papers that are at least a few years old that say the life expectancy of a person with Down syndrome is 55 years old.

So, first we need to look back 55 years and see what kind of medical treatments were available for people  with Down syndrome at birth.

There were no heart surgeries for these individuals. There was no thyroid medicine. And, digestive issues were left untreated. If these individuals had these or other medical issues they could have gone unnoticed and/or untreated all these years and eventually, at around 55 or younger their bodies gave out. 

We also need to remember that 55 years old is an estimate and there are many even today who have lived well into their 80’s! This 55 is just a round number that was determined by some research of a certain group of individuals.

And, it is important also to consider that the majority of individuals with Down syndrome 55 years ago grew up in an institution, lived their lives in the same place, and most died in the same place! They were not nurtured or educated.

Now, lets look at today….

If  your child has a heart condition, more than likely he or she can have heart surgery and it will be fixed.

If your child has a thyroid condition it can be managed with a simple pill every day. 

If your child has most any medical problems associated with Down syndrome these medical problems can usually be fixed or treated successfully.

Children, at least in America, are no longer put into institutions (Thank God!) and they are able to go to school, get an education and learn all they need to know to help them succeed.

They are loved unconditionally and cared for extremely.

Although I do not claim to be able to predict the future, I am pretty confident that today’s generation of individuals with Down syndrome and mosaic Down syndrome will live long, fulfilling lives as long as they are loved, cared for and their medical needs are addressed. However, there are many without Down syndrome who die at an early age for whatever reason. Unfortunately, life has no guarantees.

It is important to remember that those with mosaic Down syndrome can have the same medical conditions associated with Down syndrome, so the same Down Syndrome Healthcare Guidelines apply to everyone who has any amount of extra 21st chromosomes. 

Mrs. Whitehouse, I would like to invite you and any parents of children (of any age) with mosaic Down syndrome to join our online support group. You can do so by clicking here. This is a great group of parents throughout the world who are very caring and welcoming to everyone! 

Also, I invite you to visit International Mosaic Down Syndrome Association’s website and consider becoming a member as well. We provide lots of support, information and research and have many programs to help our families throughout the world.

Wow! It has been quite a week!

At the first of the week we announced our Genes Day in honor of World Down Syndrome Day.  In just five days we have seven teams and our top fundraiser is Treston’s Friends who have already raised $35! Way to Go Treston!

If you haven’t made a team yet, or have no idea what I am talking about, please visit our site here , so you can find out how you can spread awareness in your community about Down syndrome and mosaic Down syndrome!

I think I will begin highlighting the Genes Day top fundraiser at the end of each week here on my blog. That way, you get to show off your beautiful child and brag a bit about your fantastic fundraising skills! So… this is just one more reason for you to make a team!

Most of the US had crazy ice and snow all week, and even here in Texas we got our fair share! We had a bad ice storm earlier in the week  and everything was frozen for a couple of days. But not nearly as bad as the North and the NorthEast, so I am not complaining! If you live where there is ice and snow, please keep it to yourself.

In the midst of all our conference planning, I found myself again explaining that this is a Down syndrome conference! I don’t quite understand why it is so confusing to so many. Well… I do a little, because International Mosaic Down Syndrome Association is for mosaic Down syndrome, but I have written it in every form of writing, every brochure, all our websites, anything that I write…. AND, the Down Syndrome Association of Greater Cincinnati is hosting the event. So… just in case there is any more confusion (and I know that there still will be)

THIS IS A DOWN SYNDROME CONFERENCE! 

Because people with mosaic Down syndrome have the extra chromosome found in Down syndrome they do have all the same issues in development, learning and health, even if it may be in some cases a different degree of problems, they still can have these problems, so when we have our conferences we invite all the same speakers that anyone would invite to a Down syndrome Conference.

Our conference is on July 10-12 in Cincinnati Ohio. To find out all about it you can visit our conference page by clicking here.  We are planning for 34 speakers at the main conference and are still finalizing our planning for the Youth and the Kid conferences. If you would like to view the speaker list for the main conference along with topics for each workshop, you can click here for that. (yeah… I know… the speaker list is very exciting!)

In the midst of this all, I worked to sell my husband’s truck to pay bills. Apparently we really are in a recession and no matter how low the economy gets, the bill collectors still like to have their money!

Then, if all of that was not enough, Tim is co-conspiring with my dad and apparently they made a deal together that my dad would teach Tim to drive! Tim can drive and has off and on with my dad over the years. I just worry about slow reflexes if someone was to brake suddenly, or his ADHD taking over and he sees a butterfly and decides to watch that instead of the road! Yeah… I am probably being overprotective, but can a mom really be over protective? I feel like it is my job to keep him safe.

Oh well…. I can see hair coloring in my near future!

My dearest friend, Dr. Sindoor Desai, has a remarkable son, Sujeet, who is an amazing musician who plays 6 musical instruments. He is a black belt in Tae Kwon Do and was the youngest person to ever receive the high rank that he has accomplished in this Martial Art. He is married and living with a great support system in place for him and his wife, Carrie. When I first met Sujeet so many years ago, I was struck by his great personality and how he wrestled with my youngest son, Garrett who thought that anyone 20 year old and up were fair game for wrestling.

Over the years, Sindoor and I have become close friends. We have the kind of bond that we know we can share any concerns we have with one another about our kids or life in general and not worry about judgement. Last year, Sindoor and I set up an online support group for parents of children with Down syndrome who are of Asian decent. This is a wonderful group and families come together daily to share their concerns and accomplishments knowing that the other families can understand their situations because not only do they have children with Down syndrome, they also share common beliefs and cultures.

Last week, I got a Google Alert about a newspaper article that was highlighting Sujeet about a musical performance that he was about to do. I sent it along to Sindoor and she sent it along to friends and family.

The Daily Orange reporter Edward Paik, no doubt was trying to report a good, positive story about Sujeet and how great his musical abilities are. However, in his attempt to do so, he did not use correct “First Person” language. He said that Sujeet “suffered from Down syndrome” He says that Sujeet’s mind is limited. I know Sujeet…. his mind is far from limited!

Parents and supporters have been leaving comments on this article all week long educating him on the importance of First Person language. It isn’t that the article is written poorly. And, it isn’t that the reporter was trying to be harsh. He just didn’t go that extra step that parents and advocates appreciate-actually LEARNING about Down syndrome and the individual before reporting on it!

I suggested to him that he take the time to know Sujeet. Then, he would know that the only thing that Sujeet suffers from is ignorance of the world.You can read my paper on People with Down syndrome Suffering here.

Go Here to read the Daily Orange paper and leave your comments.