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

23 years ago today I was lying on a narrow hospital bed waiting for my baby’s lungs to develop before delivery for the next day. The next day, was D-Day. This day would mark 32 weeks in my pregnancy. Throughout my pregnancy I had Placenta Previa-basically this means that my placenta was falling out. So, I was put on bed rest and when I continued to have trouble I was admitted indefinitely into the hospital and had been there for a month before my water broke-which marked my indefinite D-Day.

I was young-only 20 yrs old. It never occurred to me that babies died. It never occurred to me that having a premature baby was a dangerous thing. It never occurred to me that at 20 years old, I would come face to face with death-not just for my baby, but also for myself. And, it never occurred to me that my baby would be born with anything out of the ordinary.

Oh sure, I knew these things happened….to other people. 

So, 23 years ago today I lain on this hospital bed in a “semi-private” labor room in which I had various “room mates” for my three-day stay. I watched them come and go and it never occurred to me that within the next 24 hours my life would change forever. 

On May 19, 1986 I had a beautiful baby boy. I wasn’t able to see him till the day after he was born because I was too weak and far to sick from the loss of blood since I had refused a transfusion because of the high risk of AIDS in transfusions back then. 

Having a baby changes your life. This one definitely changed mine. I could say it was because I was near death. Or even because he was too.  But that is just where the story begins. It wasn’t life-altering at that moment. Probably because I was far too young to realize the true danger that we were both in. Even when my doctor came in to my room with tears in his eyes as he explained that I was dying and there was nothing more that he could do, it never occurred to me that I would actually die. And thankfully, only by God’s grace, I didn’t die. And neither did my baby.

The beginning of my life-altering moment came 2 years later with a blood test that revealed that my beautiful baby boy had a few extra chromosomes. The moment when they told me that he had mosaic Down syndrome and there was nothing in the literature; no book, no pamplet, not even a flyer, that could tell me what to expect with this diagnosis, my life changed. 

Many would think that my life changed for the worse. After all, I had no information, I had no one to talk to and compare notes, I had no support. But I had my “Mommy Instincts”. And as the years went by, I realized that raising a child with mosaic Down syndrome was no different than raising any other child really. Sure, we had to make up some rules as we went along! Definitely, I had a few Pity Parties throughout the years. But the thing I learned the most is, having a child with extra chromosomes is no different than having any other child. And I have others to compare it to! 

23 years ago tomorrow, my tiny 4 lb 4 oz baby boy was born via Emergency C-section. He had his Mommy’s dark brown eyes and was so tiny that his 6 inch high Teddy Bear was more like a Grizzly to his small frame. He loved to snuggle up to me and fall asleep while I rocked him gently in the squeaky old  wooden rocker in the “growers room” at NICU. I loved the way he would yawn and crinkle up his face like a miniature wrinkled old man. I loved the way he smelled when I held him and when I had to leave him I would smell my shirt for the rest of the day-just to try to stay close.

Now, 23 yrs later, that tiny baby is a grown man who takes care of his mom. He is always sensitive to my needs and jokes that he is amazed that I lived through his hyper-active years. He says that he is glad that he has mosaic Down syndrome because without it, he wouldn’t be the person he is today.

I know that if Tim did not have mosaic Down syndrome, I would not be the person I am today. I would not be as strong as I am. I would not have the knowledge that I do. I would not have the wonderful extended family that I have. And, International Mosaic Down Syndrome Association would not exist the way that it does. Families would still be left out in the cold wondering what this means for their children.

Tomorrow is my baby’s 23rd birthday. For this special day, I have a very important announcement that you may not want to miss.  

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.

Yesterday I told you about our great news about the Hannum family being on Mystery Diagnosis this Monday April 6th at 10pm EST. The twist to this story is when they taped the show they needed a person to play young Hannah in the reenactment. It didn’t take long to search for someone because Isabella Johnson lived in the same town as Hannah Hannum and she, too has mosaic Down syndrome.

Isabella has her own Mystery Diagnosis story (just not featured on the Discovery Health Channel) When Isabella was 4 months old her mom Sue noticed her pupil did not dilate in one eye and she also kept questioning the smallness of her daughter’s head.  Finally at 9 months of age she was referred to a Geneticist. After convincing the doctor to run test, it was discovered that Isabella had not only mosaic Down syndrome but also Triple X syndrome. (this is a extra copy of the X chromosome) 

Now, at 27 months old, Isabella is beginning to show some speech delays but her motor skills are doing great and she is the joy of her mom and dad’s life!

Isabella is also featured on the back cover of IMDSA’s “What is Mosaic Down Syndrome For The Professional”

For more stories of late diagnosis of mosaic Down syndrome, please visit IMDSA’s website by clicking here. 

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!

I am sure you all are tired of hearing me talk about our upcoming Down Syndrome Research & Awareness Conference. Well, maybe you aren’t… maybe you are actually learning something from it and maybe you are getting excited about it and are planning to come! I hope to be able to meet as many people as possible there! We always have a great time and the worst part of the whole weekend is leaving on Sunday!

So, today I am going to switch gears a little bit. I have a question that I want to raise to all the parents who have a child with any form of Down syndrome. 

When Tim was first diagnosed with mosaic Down syndrome, my main concern was that people would think differently of him. That he wouldn’t make friends. That people wouldn’t like him. I worried that others would see his mosaic Down syndrome before they saw him.

When your child was first diagnosed, what was your biggest concern? What did you worry about?  Was there something specific? Or was it a number of things?

Please leave a comment and share your story with everyone about your biggest concern.

It is hard to believe that we have been planning for our Down Syndrome Research & Awareness Conference  for ten months now! No wonder I am so tired!

On April 1, 2009, the conference registration prices will go up. Not considerably so, but this is our early registration deadline and the price will change. 

Many ask, how much it cost to attend the conference.  Well, it depends on how many you have coming with you!

If you register before March 31 and you are a member of IMDSA, the registration for the main conference is less expensive than those who are not members. However, you can become a member for only $25 and this will give you a free subscription to our quarterly newsletter MOSAIC WORLD that is packed with information pertaining to not only mosaic Down syndrome but also Down syndrome. These articles are all very helpful in raising your child no matter how old or young they are. You also will receive discounts such as this and our information packet full of info and inspiration. If you wish to become a member, even for the discount, that is ok with us! You can click here for more details. 

To register, click here for details.

We realize that many people are struggling right now to make ends meet and we want more than anything for you to be able to attend this conference! We are, doing all we can to help make it as easy and affordable as possible.  To make this easier, we have compiled a list of possible organizations that may help you attend the conference. Don’t be shy about this! Many organizations have funds set aside to help you attend conferences such as ours! So, please utilize this list!

IMDSA is offering two (2) conference scholarships to IMDSA members. Please click here for more details.

DSAGC is offering scholarships to families in their immediate area to attend this conference. Please click here for more details.

There are many organizations that have funds set aside to help families like yours attend conferences that will enhance your parenting to your child with special needs. If you live within the United States of America please click these agencies below and ask them if they have financial assistance available to help your family attend this conference.

Down Syndrome Associations

The Lion’s Club

The ARC

United Way

Developmental Disabilities Council

Yellow Pages for Kids

If you live outside of the United States and have a current VISA or Passport contact the following organizations and ask them if they have financial assistance available to help your family attend this conference.

Down Syndrome Associations

The Lion’s Club

United Way

If you have not yet seen our presenter list you can click here for that.

I am very excited about our upcoming conference and I do hope that I can meet all of you there! If you have any questions, just ask!

Sometimes, you have to just stop and ask yourself,  “Why am I here?” “What am I doing?” “What matters most to me?”.

In the hustle and bustle of our big universe we tend to sometimes overlook the reason we are where we are in the first place. 

What brought you here to my blog?

Do you have a child with a developmental delay? Does your child have Down syndrome? Maybe mosaic Down syndrome? Do you personally have a developmental delay? Or like my good friend Casey says “An Ability”?

What are you doing?

Are you busy moving about from one moment to the next, tirelessly advocating for those who need your help?Are you getting overwhelmed with all the work you do and sometimes feel that no matter what you do, it just isn’t enough? Do you wish that you could just throw in the towel and say, “Let someone else do it!”?

Or maybe you are just starting out and you are confused and wondering what all this means and what the future holds for your child.

What matters to you most?

No matter what brought you here today to my blog, you are here for a reason! Something has brought you here to this place right now. And yes, the big things do matter! They matter a lot! But it is the little things that matter the most. It is the little things that bring tears of joy to our eyes! It is the little things that we all work so hard to accomplish. 

In America, decades ago, the first astronaut walked on the moon. At that moment, he said, “One small step for man. One giant leap for mankind” Those small steps are what matter the most. Those first steps that lead us into independence are what brings a smile upon our faces and tremendous joy to our hearts. 

Today, 22 month old Gideon, made that small step towards independence! 

This is why we are here folks! To share those very special moments that matter the most!

Way to Go Gideon! I can’t wait to see what you’ll do next!

Joan Dostal is an OTR/L- Pediatric Clinical Specialist and has been practicing Occupational Therapy for 30 years and is a specialist in Sensory Integration.  She was one of the founding owners of the Cincinnati Occupational Therapy Institute and and is currently the Vice President of the Cincinnati Occupational Therapy Foundation.

Children with Down syndrome can sometimes experience a variety of sensory issues. Sensory Integration disorder is a neurological disorder that happens when the brain can not process the five basic sensory systems. (sight, sound, smell, touch, taste) I am sure that many parents have found that their child freaks out when there is a different piece of clothing because it feels different, or has trouble with different textures when eating or touching things. 

According to the Sensory Integration International (SII), these are some of the signs found in Sensory Integration Disorder:

• Over sensitivity to touch, movement, sights or sounds
• Under reactivity to touch, movement, sights or sounds
• Specific learning difficulties /delays in academic achievement
•  Tendency to be easily distracted / Limited attention control
• Difficulty in making transitions from one situation to another
• Activity level that is unusually high or unusually lo
• Social and/or emotional problems
• Difficulty learning new movements
• Delays in speech, language, or motor skills
• Physical clumsiness or apparent carelessness
• Impulsive, lacking in self-control
• Inability to unwind or calm self
• Poor Self Concept/body awareness

Joan Dostal will be attending our Research & Awareness Conference in Cincinnati in July to discuss these issues that sometimes happens to a child who has Down syndrome or mosaic Down syndrome and will give us all some great ideas on how to help our children with these problems.This will be a very interesting topic and something very important if your child is dealing with any of these issues! I personally have a few sensory issues myself and I can tell you first hand that I would love to be rid of them completely! Imagine if your child is experiencing this same thing and maybe they are just too young or do not have the communication skills yet to tell you how icky it feels to have Sensory Integration Disorder!

If you haven’t yet registered for the Down Syndrome Research & Awareness Conference, please don’t wait too long! March 31 is the early registration deadline and after that, the prices will go up! Also, the Sheraton Cincinnati North Hotel and Indoor Water Park is booking up fast, so be sure to reserve your room before they all run out! Just click here for all the information!