MOSAIC MOMENTS

For Immediate Release: Franklin, TX- In 2004, Chandos J. Field (CJ) of Appleton, WI began considering adoption to expand her family and give her 7-yr-old son, Brendan a sibling to grow up with. She decided to consider adopting a child with Down syndrome, and began her search for information online. Field connected with a support system which provided her with numerous friendships and valuable information. Soon after, fifteen month old Emmalee became part of the family and CJ became part of a growing group of parents advocating for their children with Down syndrome.

Emmalee Field with The Traveling Afghan

Individuals with Down syndrome (Ds) can sometimes experience a variety of health conditions associated with the third copy of the 21^st chromosome that causes Ds. Some may be born with heart conditions, while others may have digestive problems, thyroid conditions or Leukemia. Most of the health complications associated with Down syndrome can be treated with proper medical care and individuals with Down syndrome are leading long, healthy lives because of these medical advances. However, it can sometimes be hard for a family coping with these conditions at the time.

While young Emmalee is relatively healthy, CJ noticed a lot of the little ones in her online circle going through many medical hardships. After teaching herself to crochet, CJ wanted to provide those children with an afghan to comfort them and let them know she was thinking about them and their families.

“This was my way to reach out to these families” says Field, “but there was not enough yarn or time to make every single child an afghan of their own.”

CJ decided to go a different route-one that would not only comfort the families, but also connect them in a very special way. Field decided to make one afghan that would travel throughout the world to reach all families of children with Down syndrome. The idea appealed to many families and in March 2009 “The Traveling Afghan” began its journey. When a family receives the afghan, pictures are taken to share on the website and the children are comforted with its soft fibers and bright colors before it is mailed to the next family down the line. But this is more than just a photo shoot. The Traveling Afghan has connected families of children with Down syndrome throughout the world in a very unique way that strengthens the bond between these families. It has also reconnected CJ with a child she provided foster care for during the child’s first three years of life. This child has now been adopted and has an afghan of her own specially made by Field.

Emmalee Field with The Traveling Afghan

In just the short few months that The Traveling Afghan has been moving from family to family, the project has grown so much that it now has its own website and has become a great tool of awareness for those with Ds. Families from all 50 states and 15 countries as far as Australia have added their name to the waiting list to receive their chance to share this common bond.

The Traveling Afghan will take a unique journey across the United States in July to reach the Down Syndrome Research & Awareness Conference-BUILDING BRIDGES FOR DOWN SYNDROME, being held in Cincinnati, OH on July 10-12. This International life-span conference is hosted by the Down Syndrome Association of Greater Cincinnati (DSAGC) and is being brought to the area by International Mosaic Down Syndrome Association (IMDSA). IMDSA’s president, Kristy Colvin will begin the journey with the afghan from her residence in Central Texas and make stops along the way to spread awareness about Down syndrome. Everyone attending the conference will have the opportunity to participate in the first largest photo shoot with The Traveling Afghan and then send it on its way to the next family to continue its journey. CJ Field has also generously donated another afghan which will be available at the conference’s Silent Auction that Friday evening. 

The project has become so popular among the families of children with Down syndrome that it has also branched off into “An Afghan of Their Own” in which CJ provides many children with their own afghan. To date, 24 children have received their very own afghan, in the same pattern as The Traveling Afghan in their choice of colors. To include your name on the growing list of families or make a donation so others can receive “An Afghan of Their Own” you can visit the website at www.thet21travelingafghanproject.com

For more information about the Down Syndrome Research & Awareness Conference- BUILDING BRIDGES FOR DOWN SYNDROME held in Cincinnati, OH, visit www.imdsa.org or call 888-MDS-LINK.

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International Mosaic Down Syndrome Association is a nonprofit organization designed to provide support, information and research to those affected by mosaic Down syndrome. Mosaic Down syndrome is a rare form of Down syndrome affecting 2-4% of the Down syndrome community. The Down Syndrome Research & Awareness Conference is a life-span conference held biennially to meet the needs of all families affected by all forms of Down syndrome.

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

Parents of children with Down syndrome (DS) are universally concerned about the wellbeing of their child’s health, future, and connecting with other DS families.  The Down Syndrome Association of Greater Cincinnati (DSAGC) hosts “Building Bridges for Down Syndrome” the fourth Biennial Research & Awareness Conference presented by the International Mosaic Down Syndrome Association.  (IMDSA)

The term Down syndrome 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 one in every eight-hundred 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.  Attendees of this biennial research and awareness conference are empowered with information and 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 (and siblings) will learn everything from how to manage a budget to relationships and friendships in the Teen & Adult conference.  Children ages 2-12 with DS (and siblings) will learn a variety of subjects from Acting and Puppetry to Bullying and Stranger Danger in the Kid Konference. While students interested in a professional career pertaining to DS will supervise these youngsters to have a better understanding of what DS really means for the individual.   Together families and professionals will enjoy the Friday Night Family Reunion & Silent Auction with entertainment from The Amazing Portable Circus and Self-Advocate’s Sujeet Desai, Tim Colvin and Casey Morton.

At the 2007 conference held in Richmond, VA, attendees said, “IMDSA’s Conference is like no other I have ever been to.  You have a sense of family the moment you step through the doors.  Everyone is welcoming and I learned so many things from all the speakers!” 

Join IMDSA & DSAGC Friday, July 10 through Sunday, July 12 at the Sheraton Cincinnati North Hotel and Indoor Water Resort in Sharonville, Ohio for a full scheduled weekend of information, family fun, socialization, and entertainment by Sujeet Desai, Dan Kulp, Tim Colvin, & Casey Morton.  Over 30 experts will discuss various topics that are 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 DS and researchers and professionals will also benefit greatly by attending.  There will be many great activities, research, workshops, and the highlight of the weekend with the Family Awards & Celebration Banquet & 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 now!  To register and for more information, www.imdsa.org

For Main Conference Schedule click here.

For Teen & Adult Conference Schedule click here.

For Kid Konference Schedule click here.

Sometimes there are some advantages to having A.D.D. I tend to hop from one place to another when I am looking for something online and just like when you go to the store for one thing and come out with a special treasure you never knew even existed, most of the time when I am surfing on the web, I often find a special treasure here and there that I never knew was even there!

Just recently, I happened upon such a treasure and if you are a parent of a child with Down syndrome or Autism or any learning disability or developmental delay, I think you will agree that this is a fantastic find! Over the weekend, I had the opportunity to talk on the phone to the founder of Get IEP Help, Yael Cohen, and we had a great conversation about all that Yael does to help parents understand the whole IEP process.

Yael says,  “When things just aren’t going so well with your child at school, you want to know why, what to do, and how to get it. I have over 30 years experience doing just that. Along with helping parents successfully advocate for their children’s educational needs, I also directly help children with learning challenges to read, spell, and learn other academic skills and strategies. I have a B.A. in Speech Pathology and an M.A. in Special Education, with an extensive background in reading, math, and writing instruction. Parents like you seek me out for my expertise, but also because I can help you not only figure out what will work for your child, but where you find the local resources. I am a true believer that your child deserves a great education. With the right kind of instruction, every child can learn - yours included. In my spare time, I enjoy the gorgeous Colorado mountains. I have adult twin children, who finally(!) sleep through the night, and I live in Boulder, Colorado. I look forward to assisting you and your child.”

She has a great deal of information available at your fingertips on her website  and she offers FREE TELESEMINARS ,(next one this Tuesday!) a FREE PHONE CONSULTATION, several books and products to help you with IEP’s and help you with your child’s learning problems,  and if you need a little extra help, Yael will help you with that Second Opinion . As a professional she can help you with your IEP and take some of the anxiety and tears away!

Consider this….

Does your meeting seem like Debra’s in Florida?

“I sat in that IEP meeting with my heart throbbing.  There were at least a dozen people, most of whom I had never met, sitting on the other side of the table, telling me about my child’s numbers.  They kept smiling at me while they spoke ― mostly in what sounded like Greek.

“They gave me lots of papers and told me I should sign.  Although they said I’m their partner, I seemed to be the only one who didn’t speak Greek or understand what the numbers meant.   I was still trying to grasp what they said about something being wrong with my child.  They asked me questions, but didn’t ask more about my suggestions or write down what I said.  I thought I knew my child, but suddenly, at that meeting, I felt stupid and left out.”

Or , does your IEP meeting seem more like Susan’s, in Colorado?

Susan’s son, Doug, was so learning disabled, that in the spring of his first grade year, he could not read anything, not even his name!  He cried in class when the teacher said, “You don’t really need my help!

You can do it if you try.

“Nightly, Doug confided to his mom, Susan, that he was clearly the stupidest kid in 1st grade.  Finally, the school agreed to test Doug. Susan was both anxious and excited on the way to the first IEP meeting. She thought that for sure the school would figure out what Doug’ problems were and how to solve them.

“Susan was in shock as the meeting unfolded.  The school team used gigantic words that she didn’t understand and kept spewing out numbers that made little sense.  They blamed her for the fact that Doug couldn’t read and even suggested a change in visitation between her and Doug’s dad.  In her gut, little that they said felt right to her. 

“Over and over, the staff kept asking Susan to trust them and to sign the forms. But when she asked what they would be doing to help Doug, the answers were again full of foreign-sounding words and numbers. She refused to sign.  Instead, Susan took the paperwork home and tried to do some quick research on the internet, but there was just too much she didn’t understand.  In tears, she called an old friend of hers who had help from an advocate for her child.”

Here’s what Susan said afterwards…

“It was just what I needed.  Yael, the advocate my friend recommended, explained everything to me in plain English, showed me what the testing meant, and analyzed the IEP (Individual Education Plan) document for me, letting me know which parts made sense and which parts did not.  She asked me questions and offered solutions.

She gave me a plan to follow for the next meeting and then convinced the school to use a research-based reading program for Doug.  She helped us to find a dyslexia specialist to help him outside of school.  She is a walking encyclopedia, who gave us so many resources!

Over time, Yael has taught us how to advocate effectively for our child.  No longer do I feel stupid in the meetings about my son.  And on top of that, my son now is a avid reader!  I’m really excited she’s offering these online conferences for parents, because all parents of kids with special needs to know the secrets of how to get through!

You Don’t Want To Miss This Online Conference: How To Sign Up

Go Now To www.GetIEPHelp.com/spedteleseminars.html and Register for Free Online Seminars for Parents of Kids With Learning Challenges.

This week’s online/phone seminar on Tuesday is on How To Break Down Academic (and

Household) Tasks So That Your Child Can Learn How To Do Them.  To sign up for this and other Get IEP Help free online parent seminars, go to:  www.GetIEPHelp.com/spedteleseminars.html

When you get the conference info, you’ll also get a link to the last online conference Yael did, which is free online for just a few more days.  You’ll also have an opportunity to ask a question for this conference.

What Else You Can Discover:

You might want to check out Yael’s other services while you’re on www.GetIEPHelp.com  –  She offers a whole “Get IEP Help System” which helps you do it yourself, 2nd Opinions on your upcoming or last IEP,

and even a super online reading program for beginning or struggling readers.

Folks, it doesn’t have to be that bad – check it out today!

 Please check out Yael’s website by clicking here.

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!

Online Event Registration - Powered by www.eventbrite.com

I have not posted in a while only because I have been swamped with conference planning! If you have not yet reserved your spot for the conference time is running out!

MySpace Countdowns

 You can find out how to register for the conference by clicking here

One workshop that we will be having at this conference is a Round Table discussion on Adult Transition and the things that need to be changed with this system in America. When an adult with Down syndrome finishes high school, there should be a transition team in place that will help the adult and their family to make decisions on what to do next. However, that system basically sucks. And, another problem many families are having is the emotional impact of “What do I do now?” Families have trouble letting their child grow up because they have been so focused on their well being for the past 20+ years and all the sudden all the support they once had is basically gone.

It is time for a change. Just like back in the 70’s when families stood up and demanded that their children be allowed in public schools, families now need to stand up and pioneer this new step to a better future.

If you are interested in being part of this committee, would like to participate in the Round Table discussion in Cincinnati, or just have questions, you can send me an email at Kristy@imdsa.org and I will be happy to talk with you.

Today was the beginning of a huge change in life as we know it! Years ago, I don’t really know when or how it happened, but all of the sudden someone finally said that it was WRONG to say the “N” word. Someone said, “Hey! That’s just not very nice!” Someone said “Enough is Enough!” And when that person began to spread around that using the “N” word was hurtful and demeaning and racist and wrong, people eventually caught on and decided that they too would no longer use that word anymore.

Now I am not naive enough to think that no one uses it. In fact, I know that many still do. But it is under hushed breath or spoken by the ones who were first called that hateful word and I suppose if you were the target of the word, then it is your prerogative to use it or not. However, I never-not even once-used that word and when I heard others use it, even as a small child, something in my heart broke and I felt very sad that people used the word at all!

So, today, is the beginning of a new era! Today, like so many years ago, people throughout the nation and throughout the world stood up and said, “Enough is Enough!” When a person uses the “R” word it is hurtful and demeaning and racist and wrong! Today people took that stand and from now on, people will continue to take the stand. 

And, today, as a person part of that movement, I want to challenge YOU!

Spread The Word To End The Word

When someone uses the “r” word, tell them why it hurts. Tell them that it is wrong. Tell them ENOUGH IS ENOUGH! Tell them that THEY can be part of history! And, then, Tell them to pass it on!

To find out more about this campaign click here .

It is time to “Spread the Word to End the Word,” and tomorrow, 31 March, events throughout the United States and around the world will make people stop and think about their hurtful and disparaging use of the word “retard.”

On Tuesday, March 31 people throughout the world will stand united to spread awareness that the time is NOW for the “r” word to end. 

Many don’t understand why this word is so offensive. However, this is considered a hate word, a racial slur, an intent to harm.

March 31 is also the last day for Early Registration for the Down Syndrome Research & Awareness Conference. On April 1st these prices will go up. Please visit our website by clicking here to find out more information.

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.

Many people have asked about what they can do with their children during the Down Syndrome Research & Awareness Conference in Cincinnati in July. International Mosaic Down Syndrome Association holds a very special Kid Konference for children ages 2-12 and Youth Conference for ages 13-adult.

When we first began our conferences back in 2004, we saw two needs that needed to be filled.

First, our parents and family members needed to be able to listen to workshop presenters, and ask questions that are sometimes difficult and uncomfortable in front of children. These families needed to be able to relax and not worry about what their children were doing and that they were safe. And, the children didn’t need to be bored during these hours the parents were away.

The second need that we saw was that geneticists, teachers, nurses, doctors and therapists were learning only the basics in their schooling about Down syndrome and very few had even heard about mosaic Down syndrome. These students were only learning what their books told them and they didn’t have a real perspective on what it truly meant to have extra chromosomes for the family and for the individual.

So, we combined these needs and developed our Kid Konference. Children ages 2-12 with Down syndrome, mosaic Down syndrome and their siblings are divided into three age groups. 2-5, 6-9 and 10-12. Within these groups, we invite students who are learning in a field that will put them in places where children with Down syndrome and mosaic Down syndrome will be. We do background checks on each student to ensure the children’s safety and the students supervise the children on Saturday and Sunday during their workshops. This enables students to learn what it really means to have Down syndrome or mosaic Down syndrome and gives them hands on experience with the children. Every student who attends this program also is allowed to attend the workshops of their choice to further enhance their careers and each receive a certificate of participation at the end of the conference. Every student who has attended this program has said that it has truly changed their lives and it is something that they will always remember.

Currently, we are still working on finalizing this schedule for our Kid Konference and each presentation will be geared towards the age group. But to give you a good idea about what is in store for the children, we are planning on the following topics:

• Music Therapy & Fun
• Art Lesson (will be displayed at banquet)
• Yoga for Kids
• Karate Moves for Fun
• Sports
• Everyone Can Cook
• What to do about Strangers
• How to deal with Bullies
• Tumble Bus
• Magician
• Clown
• Coloring with Coco the Bird (The Coco Keys Water Resort Mascot)

I hope this gives you a good idea about the Kid Konference! The cost is only $10 per child and this includes 2 snacks on Saturday and 1 snack on Sunday. 

Early Registration ends on Tuesday, March 31st!  After this prices for the main conference will go up. For more information on this and how to register, click here.

Tomorrow I will give you a little insight on what to expect for the Youth Conference!