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

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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

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.

On July 10-12 the Down Syndrome Association of Greater Cincinnati will host IMDSA’s Down Syndrome Research & Awareness Conference . This is actually 5 conferences in one.

1. Families and Individuals  participate in research with various Down syndrome researchers (by appointment)
2. Down Syndrome Association Board Members workshop allows DSA board members to network and learn more to help run their DSA’s.
3. Research & Awareness Conference allows families and professionals the opportunity to learn from over 30 experts in the Down syndrome field through 4 ongoing breakout sessions throughout the weekend.
4. Children ages 2-12 (sibs included) have fun at Kid Konference while students get hands on experience to enhance their careers.
5. Teens ages 13-adult (sibs included) enjoy themselves while learning great things at the Youth Conference

With our early registration deadline quickly approaching on March 31st I want to be sure that I tell you as much as I possibly can concerning the conferences.

Many have asked about the Youth Conference. This is for ages 13-adult and siblings are included and will also learn and have fun!

We have broke this into three themed tracts and youth can choose which workshops they wish to attend. We are still working on the finalization of this conference schedule, but to give you a general idea of the topics we are looking to be addressed, here are just a few of them:

Tract 1 Recreation and Leisure:

• Social Networking
  
• Acting and Movement
  
• Sports - Special Olympics
• Yoga
  
• Karate

Tract 2 Planning for the Future:

• Independent Planning
• Self-Advocacy
  
• Leadership opportunities
• Transitioning to College
• Money Management

Tract 3 Personal Living:

• Self Defense and Community Safety
• Special Friends Online
• Relationships
• Music and Singing
• Jobs & Careers
• Hygiene and Personal Care

The folks at Starfire U have been fantastic at planning this Youth Conference for us! I am very excited about all the possibilities for our Youth Conference this year and from past experiences, the youth who attend our conference not only learn very valuable information to help them with their lives, they also form lasting friendships that carry over far after this conference has ended!

To find out more information about the Down Syndrome Research & Awareness Conference and how to get financial assistance to attend, please click here to visit our website.

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!

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!

In 1981, Dr. Mary Coleman began a series published in Down Syndrome Papers and Abstracts for Professionals (DSPAP) that was the beginning of “The Down Syndrome HealthCare Guidelines”.Over the years, professionals in the Down syndrome world continued to study and learn more about Down syndrome and updated this essential checklist for those with Down syndrome to keep them healthy. The last updated version was in 1999 and can be read here .

Many do not realize that the Health Care Guidelines have been recently updated. These new guidelines are not yet published, and I am not sure when they will be. But with the news of the new guidelines we decided that it would be a very important workshop for our Research & Awareness Conference.

We will have two doctors who were part of these updates explain the details to us during the conference.

Dr. Sally Shott is one of the professionals in this workshop. She is a Pediatric Otolaryngologist at Cincinnati Children’s Hospital. She was also part of the production of Discovery: Pathways to Better Speech for Children with Down Syndrome

This DVD produced by Blueberry Shoes Productions shows that it is essential to lay the foundation for speech development as early as possible for children with Down syndrome. This invaluable resource offers practical advice, examples, and expertise for parents and professionals to follow as they help children with Down syndrome from infancy to age seven become the best talkers they can be.

Dr. Sally Shott is joined with  Dr. Libby Kumin, Professor Sue Buckley of the Down Syndrome Educational Trust, and Dr. Siegfried Pueschel. These and other experts discuss their methods and give practical tips. The DVD also features knowledgeable parents who comment on what techniques and approaches have worked best for their children.

The other professional who was part of this updated Healthcare Guidelines is Dr. Philip Mattheis also of Cincinnati Children’s Hospital. Dr. Mattheis is a Developmental and Behavioral Pediatrician and has co-authored  Medical & Surgical Care for Children With Down Syndrome:  A Guide for Parents as well as a host of other informative papers and books.

Additionally, Dr. Mattheis will be hosting another talk at the conference on behavior in children with Down syndrome.

I look forward to hearing both of these talks and learning all about the new Down syndrome Healthcare Guidelines. I think it is so fantastic that all these professionals have taken the time to come up with specific guidelines that will keep our kids healthy! 

This is why children with Down syndrome are living longer lives! Because people like Dr. Sally Shott and Dr. Phillip Mattheis and all the other great professionals who have dedicated their lives to discovering more about Down syndrome, our children have a better chance of living very long, fulfilling lives!

If you haven’t yet registered for the Down Syndrome Research & Awareness Conference, the deadline for early registration is March 31st. Click here, for all the details!

Another fantastic expert we have attending our Down Syndrome Research & Awareness Conference is Dr. James MacDonald of Communicating Partners.

Twenty years ago when Tim was first diagnosed with mosaic Down syndrome his main delay was speech-thus the reason we received his diagnosis. At 2 1/2 years old, he had 25 single words that only I could understand and was not putting any words together to make sentences.

I was very frustrated about his delays and wanted to help him anyway that I could. My Early Intervention program did a workshop that lasted about 6 weeks that enabled me to learn everything that I could to help Tim communicate. This program was put on by the Hanen Centre and much later I discovered that it was Dr. Jim’s program that the Hanen Centre had adopted and formed to teach me how to teach Tim.

In just nine months, Tim went from those 25 unintelligible words to an unlimited vocabulary that most of our family and friends could understand. And, not only was he putting words together, he was putting 3 and 4 words together to make good sentences!

I have always been a big advocate of Communicating Partners and over the years have grown to know and respect Dr. MacDonald. He truly cares about children and getting them to communicate and his program is not hard for anyone to do! It isn’t “speech therapy” it is more just a new way to play and interact with your child.

Dr. Macdonald is the author of several books (see below this post for his books) and has a very informative website (you can click here for his site). He also has a great online egroup where families from all over can share experiences and ask questions directly to Dr. Macdonald. You can join the egroup by clicking here.

Dr. MacDonald will be holding two separate workshops during our conference.One will be for non-verbal or pre-verbal children. The other workshop is for children/teens/adults who are already talking, but still have delays or trouble expressing themselves. These two hour workshops will give you the basis of all you need to know on helping your child communicate no matter what level they are at.

If you have not yet registered for the Cincinnati Conference, please be sure to do so before the early registration deadline of March 31st! If you need financial assistance to attend this conference, we can help you locate organizations in your area that will help with that! Just visit our website for all the details by clicking here.

Another fantastic Down syndrome expert who will be presenting at the Down syndrome Cincinnati conference in July is Dr. Libby Kumin. If you have never had the opportunity to meet Dr. Kumin, you are in for a treat. But even if you have heard her speak before, the information she is bringing to our conference is brand new and extremely helpful, especially for those who have teenagers and adults with Down syndrome and mosaic Down syndrome.

Dr. Libby Kumin, Ph.D., CCC-SLP, is the author of “Early Communication Skills in Children with Down Syndrome “, “Classroom Language Skills for Children with Down Syndrome “, “Helping Children With Down Syndrome Communicate Better” and “What Did You Say? DVD A Guide to Speech Intelligibility in People with Down Syndrome” She has also co-authored many books and papers and is the Director of the Graduate Program of the Department of Speech-Language Pathology/Audiology at Loyola College in Baltimore, Maryland, where she is also Founding Director of the Down Syndrome Center for Excellence.

Just recently, Dr. Kumin has begun a new adventure in the communication skills of individuals with Down syndrome and mosaic Down syndrome. In her recent and current research, Dr. Kumin has found the need for a real evaluation tool that will enable teens and adults with Down syndrome and mosaic Down syndrome to be evaluated according to their communication skills and match them with appropriate jobs in the future. She has discovered that by focusing on these specific communication skills as children and adolescents, it is possible to prepare them for adulthood and help individuals with Down syndrome and mosaic Down syndrome obtain true jobs that fit their skills. Additionally, she has developed a very special technology that is already being used to help individuals with mosaic Down syndrome and Down syndrome successfully use computers in the workplace.

Families of elementary age children, adolescents and adults with Down syndrome or mosaic Down syndrome will benefit  from this workshop. Dr. Kumin is a wonderful lady and a great person to know! She truly cares about people and has dedicated her life to help everyone with Down syndrome and mosaic Down syndrome. She is on International Mosaic Down Syndrome Association’s advisory board and not only does research for Down syndrome, but also does research on mosaic Down syndrome.During this workshop she will be letting everyone know about her new research findings as well.

To reserve your hotel and register before our Early Registration Deadline ends (March 31) just click here for all the details!

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Want to know a bit more about me and my family? Need some parenting advice? Just need a laugh after a long day? Visit my parenting blog at http://rememberwhen.today.com/

As you know, I have been planning for the past 9 months for our July 10-12 Down Syndrome Research & Awareness Conference. Early registration for the conference ends on March 31st. After that, the costs will go up some.

For the next few weeks I am going to tell you about the wonderful speakers we have coming to our conference. This will enable you to know what to expect, who will be there, and what you will miss if you don’t come!

If you need financial assistance, please email Becky at Becky @ imdsa. org and tell her your name, city, state, zip, phone number, email address, how many adults and how many children are coming and if your child has Ds or mDs. She has a great list compiled of places that may help you with your expenses and will be happy to help you! Also, if you are registered with your local ARC, contact them! THEY WILL HELP!

Did I mention that this conference will be at the Sheraton Cincinnati North Hotel and Cocoa Keys Indoor Water Resort?

The agenda for the weekend is as follows:

Friday July 10:

Research appointments with various researchers for all interested families with Down syndrome or mosaic Down syndrome.

Down Syndrome Board Networking Session

Family Reunion and Silent Auction

Saturday July 11 & Sunday July 12:

Research & Awareness Conference: 4 ongoing workshops throughout the day. This is a life-span conference so no matter how old or young your child/adult is, we have workshops for you! (Families of teens/adults: I know the system is broken and you feel left out there to do it alone. I have searched the country for speakers who can REALLY help! We have them!) The theme for this year’s conference is BUILDING BRIDGES FOR DOWN SYNDROME Together, we are bridging the gap between the Ds community, the mDs community and the general community.

Youth Conference: Youth ages 13-adult (sibs included) will have a blast with 3 ongoing workshop tracts to choose from! Recreation, Future Planning, Personal Growth The theme for this year’s conference is Finding N.E.M.O-NEW EXPERIENCES; MORE OPPORTUNITIES

Kid Konference: Children ages 2-12 (sibs included) will not want to leave as they are entertained by various presenters and learn all kinds of new and interesting stuff! Children will be divided into 3 age groups in separate rooms for maximum fun!

The children will be supervised by Genetic Counseling students, ST,OT, and PT students and student teachers as well. This program not only gives the parents peace of mind and the kids a great time, but also will educate the students way beyond what a text book can teach them!

 
don’t worry… after a few weeks in a nice quiet hospital they were fine!

Exhibitors will be present throughout the weekend!

Saturday Evening: 

Join us during our exciting banquet! This is more than just a meal together, this is an experience that will last a lifetime! We have two phenomenal speakers who will not only entertain you but also inspire you! We will give out awards at this time and recognize all the great volunteers. And, all self-advocate graduates will receive a special certificate of accomplishment for their great efforts! Additionally, you will be entertained by the Youth and special art projects will be on display from the Kid Konference!

After the banquet, don’t leave! We are having a Dance for All and this is the most exciting part of our conference weekend! Everyone has a blast!

So… that is just a little about the conference. Starting tomorrow, I will begin telling you about the presenters. Who they are. What they do. And what great information they can provide you with at our 09 Down Syndrome Research & Awareness Conference.

For more information, you can visit our website at: www.imdsa.org

Yesterday, I explained about the different percentages of cells in mosaic Down syndrome and why percentages do, and don’t matter.

During that discussion, my great friend Heather asked if you could know where the percentage of affected cells were located in the body. This is a Great question Heather, and one that comes up often within IMDSA’s support group.

This is what is so frustrating for parents of children with mosaic Down syndrome. As a parent, you receive the diagnosis for mosaic Down syndrome for your child. You are told that there are a percentage of affected cells somewhere in the body. This could affect developmental milestones…or it might not. It could affect cognitive learning…or it might not. It could affect health…or it might not.

For the parent of the child with Down syndrome, things are not black and white or cut and dry either. But there seems to be less of a question mark about what might or might not happen.

I am certainly not saying, “Hey! At least you know your child will be delayed!” It is more that for parents of children with mosaic Down syndrome, they just don’t know what to expect. (Thankfully, that is beginning to change a little since IMDSA is helping so many with information and research)

So, many parents ask the question of how can they find out what areas will be affected. Where are the affected cells located? Is there any way to find out?

There is a way to find out, however it isn’t very practical and honestly it would help in any way to know ahead of time.

The only way to find out where the cells are located would be to do a biopsy on every area of the body.

For example, you want to know if your baby is going to have a heart condition, you would take a sample from the heart. (By the way, the majority of heart conditions associated with Down syndrome and mosaic Down syndrome are easily repairable and the children usually bounce back extremely fast from the surgery)

If you wanted to know if your child was going to have low muscle tone, you would biopsy the muscles to see if the affected cells were there.

If you wanted to know about learning problems, you would biopsy the brain to find the affected cells. This would be practically every part of the brain, since each part does something different.

So, to answer this question, really… no… there is no way to tell. It is just one of those “wait and see” things. And for most parents that is the hard part. It is like waiting for a time bomb to go off. You think it will happen…. you are pretty sure it will…. but you don’t know when to expect it, so you sit and wonder about it.

In some ways, not knowing can be a blessing in disguise. I didn’t know that Tim had mosaic Down syndrome until he was 2 1/2 years old. Although I wondered why he was delayed, I didn’t sit and wait for some new delay to happen.For me, I automatically expected Tim to do everything that everyone else did. I didn’t hold him back from things and I encouraged him to excell. By not knowing what to expect, I had no preconceived notions of what would go wrong.

I think it is much better to live in the present. Not the past. Not the future. But today. There is no way of ever knowing what will happen with anyone’s life from moment to moment. You could have a car wreck tomorrow morning and receive brain damage or wind up paralyzed.

If someone was able to tell you without a doubt your child with have trouble in this area or that area. Or your child will have this health problem or that…. What would you do with that information? Would it change anything? Would it ease your mind to know that your child would have trouble with 6th grade math? Or, would it trouble your mind even more because you would realize there was nothing you could do about it?

Thanks Heather for the question! Everyone-please feel free to ask any questions by clicking my comments section under each posting. I am here to help! All you have to do is ask!