MOSAIC MOMENTS

I believe that everything happens for a reason and that God plans special babies for special parents.

In 2007 Scott and Beth celebrated their marriage in a very special way. Beth is a Special Education teacher and her friend Kristen was going to school to be a Genetic Counselor. Kristen also served on the Board of Directors for International Mosaic Down Syndrome Association . Because of these special bonds, Beth and Scott decided that instead of party favors for their wedding guests, they would donate to IMDSA on behalf of their guests. We at IMDSA were thrilled to be a special part of this very special beginning in this wonderful couple’s life.

Scott and Beth were eager to start their family and after two unfortunate miscarriages, Beth discovered that she was again pregnant this past winter. With a little apprehension, they held their breath as they watched their baby’s heart beat through ultrasound pictures.

They were thankful that their baby’s heart was beating strongly! Then, the news came that their baby probably had Down syndrome. Scott and Beth cried, but only for a little while. They were no strangers to Down syndrome. Beth was a Special Education teacher and knew children with this extra chromosome. 

Quite soon, Beth and Scott began a blog about their pregnancy and named their new baby boy Elijah Timothy. 

Time progressed and they discovered that little Eli had a heart problem. “Just an AV, nothing we can’t handle” was Scott’s reply.

More and more people began to follow their blog and then their Facebook page as well. Elijah had touched hundreds of people’s hearts before he was even born!

In July, Scott, Beth and Eli’s grandparents joined us in Cincinnati for IMDSA’s Research & Awareness Conference. Soon after, I received a message from Eli’s grandma on behalf of little Elijah.

To All

I have just returned from the Conference in Cincinnati and I would like to thank you and your entire group for the wonderful conference you had.  I learned so much and would like to take this opportunity to thank you on behalf of Eli (due in August.)

You have helped my mother, father and my grandparents so much.  Now they will have the knowledge and insight to know what I am capable of.  I have learned how to develop into a great person.  I can now eat, drink, sleep,not get lost, be safe in my home and not wander off, and best of all they will have insight from the benefit of your conference to know what I can and will be able to do.

I have wonderful parents and they are doing everything they can to make my life better. 

So please know you and your volunteers are the best.

Thank you again

Eli Miller  D.O.B.  08/25/09

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Two days ago, Beth wrote a very touching letter to her son …………………

Dear Elijah,

We are finally at the end of the pregnancy and you will be here in two days! These past nine months have been very long for daddy and me because we want to meet you so badly. I can remember how scared we were when we found out we were having you way back in December, but it was a great Christmas present! In January, we got to see our first picture of you. There you were on the screen. We all thought you looked like a little mouse in there. You continued to grow and get bigger! February 13th we learned that you had Down syndrome. From then on, Daddy and I did everything we could to learn about you. We met so many great people who are also excited to finally meet you. You have become one famous little boy!

Elijah, I promise you that we will do our best to make your life perfect. You have a lot to learn about including learning how to fish, ride a horse, play football, and root for UK basketball. There is a song that I teach the children in my classroom. It is called “I Can Do It!” Sometimes I sing it to daddy to irritate him. He hates it when I sing my classroom songs to him! Anyway, the song lyrics go, “I put my heart and my mind to it and I can do it”. I never want you to forget that. I never want you to think you can’t do something. You can and will and daddy and I will be there to cheer you on the whole way. Sometimes things may not be easy, but if you keep trying, you can achieve anything. Daddy and I have so many dreams for you. Most of all we want you to do your best at everything, be happy, be the best person you can be, and to show others that it is OK to be different.

Your time is finally up as you have proven quite stubborn about being born! Tuesday is going to be a long day for both of us. I can’t wait to finally meet you. I am also a little sad that I won’t have you all to myself as I have for nine months. Daddy says he is not going to ever put you down. You will have so many people wanting to hold you. I don’t think you will ever have to sleep in your bed! I want you to rest up and most importantly of all, keep your heart strong. Daddy and I don’t want you to scare us anymore! We will get your heart fixed in a few months and then it will work perfectly. We just have to take things one day at a time.

Our bags are packed for the hospital, daddy has the cameras charged, and the car seat is ready to bring you home. Ruby, Madison, and Cooper have no idea what is going on! They have been sniffing around your room and all your baby stuff like crazy. You will have to get used to them licking you all the time, but eventually you can aggravate them.

It seems like it has taken you so long to get here. These next two days will hopefully go by very fast. You are definitely worth the wait! August 25 will end up being a great day to be born.

Love, Mommy

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August 25th is definitely a “GREAT DAY TO BE BORN”!

Since last night Scott has been diligently updating his and Beth’s Facebook pages keeping us all in the loop. We held our breath just waiting for the news that Elijah was here! Finally, at 6:05 pm Elijah Timothy was born weighing 7 lbs 13 oz and 20 3/4 inches long. He and Beth are both doing wonderfully!

HAPPY BIRTHDAY ELIJAH! WELCOME TO THE WORLD!

A few weeks ago, CJ of the Traveling Afghan asked all the bloggers that blog about Down syndrome to write about the ties that bind us together in the Down syndrome community. I think each of us who tried to write about this had difficulty with the project. Not because we didn’t understand or agree that there are special ties that bind us together, but because there just are not words to describe such a wonderful, overwhelming emotion. 

What are the ties that bind us together in the Down syndrome community? …………………

This week I have been thinking about posting information about the great site Get IEP Help with Yael Cohen. I had the opportunity to talk with Yael a few months back when I stumbled upon her site. So, this evening was going to be the day that I was going to tell you all about Yael and all the great services she provides for parents of children with learning disabilities or delays. I was going to tell you that if your child has an IEP, no matter what the reason, this site and service is something you could not pass up! I was also going to tell you about the teleseminars that she is running FOR FREE and the prizes that she gives away during these calls! I was going to tell you about the articles that are on the site that are extremely helpful for anyone going into an IEP meeting. I also was going to tell you about her blog that she writes with helpful information. 

However, I can’t about all those things, because Yael just sent an action alert from her Facebook page and if you are in America and you have a child with Down syndrome, mosaic Down syndrome, or any learning disability you really should read this….

Legislative Alert - Don’t Water Down IEP Goals

by Yael on August 25, 2009

Hi folks,
I’ve watched it happen…we measure how many kids or the speed at which kids meet their goals and circulate it and what occurs? The goals get watered down to avoid repercussions. Not the way we want it to go. Data? Yes. Watering down IEP goals? No.
Please read and use the link to comment.
Yael

The U.S. Department of Education (USED) has announced proposed regulations governing the Race to the Top Fund — part of the American Recovery and Reinvestment Act that provides a $4.3 billion competitive grant program to states. The “Race to the Top Fund” is designed to encourage and reward states that are implementing significant education reforms in key areas outlined by the Secretary of Education.

The proposed regulations include a variety of ways to measure student achievement that, in turn are used to measure student growth. Rates of student growth will be used to measure principal and teacher effectiveness.

The proposed definition of “student achievement” includes the rates at which students meet goals in individualized education programs (IEPs).

ACTION ALERT

Please take action by submitting the following comments on the Regulations.gov web site regarding the “Race to the Top Fund (Document ID ED-2009-OESE-0006-0001) .”

All comments must be submitted to the Regulations.gov web site.

Please fill in the required information, cut and paste the below comment into the field provided and click “submit.”

Deadline: All comments must be made by Friday, August 28, 2009.

Comment:

IEP goals should not be used to measure student achievement as part of IV Definitions: Student Achievement.

In 2005, USED itself stated “IEP goals are individualized for each student, and a student’s progress toward each goal is measured for purposed of reporting progress to parents for making individualized decisions about the special education and related services a student receives.” “IEP goals may address a broad range of individualized instructional needs, as well as behavioral and developmental needs, and might not be based on the State’s academic content standards. IEP goals may cover a range of issues beyond reading/language arts and mathematics, such as behavior, social skills, or the use of adaptive equipment, and, as such, an examination of how well a student met his or her IEP goals is not synonymous with achievement…”

Such inappropriate use of achievement of IEP goals may lead to the unintended consequence of a reduction in rigor, resulting in a lowering of expectations for students with disabilities. Since student achievement is designed to be used to determine student growth and to measure principal and teacher effectiveness, it is particularly important that the use of IEP goals to measure student achievement be deleted from these proposed regulations.

Thank you for the opportunity to submit my comment.

Sincerely,

Your name

Thank you for your immediate attention to this alert.

Sincerely,
Laura Kaloi
Public Policy Director
National Center for Learning Disabilities

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I’m sorry I couldn’t tell you about Yael and the Get IEP Help site and how great the services are that she provides. If you want information on that, you can visit her site at http://getiephelp.com/

With  yesterday’s posting about the 90% abortion rate for those with Down syndrome, I thought maybe you would like to see what the alternative is to having a child without Down syndrome. This is done, tongue in cheek, but truly is the way it is for all children. As mom to 3 sons and 2 step sons -4 having “Normal syndrome” I can attest that this is sometimes way worse than having a child with extra chromosomes!

As I said yesterday…. there is NO perfect child!

Normal Syndrome

Since termination is such a common option for children with Down syndrome, why aren’t typical developing children diagnosed like this?

I’m very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call … Normal.

Some people prefer the terms “Ordinarily Challenged” or “Normal Syndrome”. The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse.

Normal marriages are often unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I’m sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.

Termination is an option.

Shall I book an appointment?

….. from a parent who received a diagnosis rather like this.

Bob Lincoln, author

Many who have followed me for a while know that I had to step back from my daily blogging during the last months of planning for our Research & Awareness Conference “Building Bridges for Down Syndrome”. All the planning and lack of sleep was worth it in the end!

We have families and professionals come as far as Australia and England and many throughout the US and Canada as well. This was, by far, our largest conference with over 350 in attendance. 

I received numerous emails after the conference saying what a wonderful time the families had and how much information they received from our 30+ speakers in the main conference. I am so glad that those who were able to attend did so! I really enjoyed meeting with everyone and getting to know the families better. 

Out of all the emails I received, there is one that has touched me the most that I really want to share with you. Many months ago, I shared a story with you about Scott and Beth and their expected baby, Elijah. You can read that inspirational story here.  

Well, Scott and Beth and Elijah’s grandparents attended our conference to gain as much information as possible about Down syndrome even before Eli makes an appearance in this world. The following was written by Elijah’s grandma, Debbie and of course…Eli.

To All

I have just returned from the Conference in Cincinnati and I would like to thank you and your entire group for the wonderful conference you had.  I learned so much and would like to take this opportunity to thank you on behalf of Eli (due in August.)

You have helped my mother, father and my grandparents so much.  Now they will have the knowledge and insight to know what I am capable of.  I have learned how to develop into a great person.  I can now eat, drink, sleep,not get lost, be safe in my home and not wander off, and best of all they will have insight from the benefit of your conference to know what I can and will be able to do.

I have wonderful parents and they are doing everything they can to make my life better. 

So please know you and your volunteers are the best.

Thank you again

Eli Miller  D.O.B.  08/25/09

The Miller’s were not the only family in attendance expecting a baby with Down syndrome or mosaic Down syndrome. I think it is wonderful when a family receives this diagnoses, even before their baby makes his or her way in the world, and are already seeking out information to help their baby become the best person that they can be.

When Tim was first diagnosed with mosaic Down syndrome, I asked “Why Me?” and “Why my son?” Now, 20 years later I know the answer to that question. It was so that I could bring information to wonderful families like the Miller’s and all the other families I have the opportunity to talk with, but also and more importantly, if my son was not diagnosed with mosaic Down syndrome, I would not have found all these wonderful families throughout the world who have taught me so much more about life than I could ever teach them!

Thanks to everyone who helped with the conference, presented, volunteered, and attended. We have, without a doubt, began Building Bridges for Down Syndrome!

Conference photos coming soon!

Hi everyone,it’s Garrett again. Mom is really busy with the conference planning, so I’m writing this for her. I’m wanting to write this story to remind you how d.u.i drivers hurt other lives and for you not to drink and drive.

This is a fictional story.

Best friends stick with you to the end no matter what . You be with them, you get in trouble with them, sometimes you even live with them. But sometimes you mess up. You call them names, they get a bloody nose, or even a black eye. Well not my three best friends: Jake, Cal, and Tom. We do everything together…mostly. 

I wake up every morning praying to God for me to be safe and my friends. I ride to school and i see that my three best friends are not there. I ask one of my other friends if he saw them last week…he didn’t. They are probably still tired from our party on Friday. I don’t know how, I’m feeling good though. It was on a Friday,today is Monday. Oh well, it’s just going to be a normal day.

Something is different about this day. Usually the preps are walking and laughing over God knows what and a nerd is reading a book. None of those things were happening. Actually everyone was quiet. You would just hear footsteps. I walk in to my bi-polar teacher’s classroom and she ask for our homework. She isn’t really bi-polar, but sometimes we wonder. Like I would do homework over the weekend. Usually she starts screaming at us and tell us how bad we were. But there was no sign of anger.  She just frowned and turned away. What is going on?

School was over and me and Jake were suppose to go and play at the school, but since he wasn’t at school today he wouldn’t be able to come. I go to my other friend’s house, Dylan, to see if he wanted to chill at the school. “You wanna chill at the school since Tom , Jake, and Cal are sick?” And with the same expression as he had at school, he just frowned and shut the door. Look I’m sad that they’re gone, but come on it’s not that sad that they are sick. I’m sure they will be at school by tomorrow..I hope.

I hope that they’re here today. I wait in the classroom for them to get here, but the bell just rang. Class started and usually the teacher ask ” where is so and so” , but she didn’t this time. After she taught us what to do on the paper, I went up and asked the teacher where Cal was because she was his mom. She said,” Aw baby…” and she started to get choked up.” Come with me. I have to show you something” We were on the top part of the school and we looked out the window, and then my whole life flashed before my eyes. There I stand and I see three wooden crosses with leis on them. I run down there and it was for a fact that my best friends were killed by a drunk driver. My teacher told me how it happened. They were riding bikes to come and get me and a drunk driver hit them. Now I know why they never came and got me. I just didn’t bother calling back. I’m glad I didn’t. My face was as red as a strawberry and I could of made a river with all my tears all I thought was that the last thing I said to them was”See you tomorrow”. But I never did…

 I hope you liked my story and I hope to write y’all again and I hope that you remember to never drink and drive!

See you in a few weeks at the Down Syndrome Research & Awareness Conference in Cincinnati! I can’t wait!!!

-Garrett

Note from Mom: Wow! Garrett told me he had a story he wanted to share tonight with everyone and since I am working on conference planning and have not had time to write, I said, “Sure! Go ahead!” As parents, we hope and we wonder if we are getting through to our children. We worry that they will make the wrong choices in life and we pray that they will live through their teenage years. Garrett turned 13 just a few months ago. I cringe when I think of what I was doing at 13! I am so blessed to have the fantastic sons that I have and every now and then, they say something like this and I realize, maybe I am not doing such a bad job after all!

Don’t drink and drive people! You heard it from my son!

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.

 “Building Bridges for Down Syndrome” 4^th Biennial Research & Awareness Conference 2009

Parents of children with Down syndrome (Ds) are universally concerned for the wellbeing and treatment of their children. In 2008 The National Institutes of Health (NIH) developed a research plan to advance understanding of Down syndrome and speed development of new treatments for the condition, the most frequent genetic cause of mild to moderate developmental delays and associated medical problems. The plan set research goals for the next 10 years that build upon earlier research advances fostered by the NIH. This goal will help families and individuals with Ds. However, with the busyness families of children with Down syndrome experience from therapy and doctor appointments to school activities and after school sports families rarely have the opportunity to participate in Down syndrome research.

The Down Syndrome Association of Greater Cincinnati (DSAGC) is hosting “Building Bridges for Down Syndrome” the fourth Biennial Research & Awareness Conference presented by the International Mosaic Down Syndrome Association (IMDSA) on July 10-12 in Sharonville, OH at the Sheraton Cincinnati North Hotel & Coco Keys Indoor Water Resort. Families will have the opportunity to participate in various survey and non-invasive research activities with many leading researchers in the Down syndrome field.

Kristy Colvin, President of IMDSA explained, “Families are busy and researchers have too few participants. By bringing families and researchers together in one place to participate in these studies, we are enabling both communities to come together to learn more about Down syndrome.”

        Connor Gifford

In addition to the research, families and professionals will have the opportunity to learn more about all aspects of Down syndrome throughout the weekend. Over 30 of the nation’s top Down syndrome experts will be on hand to present various workshops in this life-span conference. The event will kick off with Keynote speaker Self-Advocate/ Author  Connor Gifford and Congresswoman Cathy McMorris Rogers who began the Congressional Down Syndrome Caucus after her son, Cole was born 2 years ago with Down syndrome.

Congresswoman Cathy McMorris Rogers and Family

As a family event, children with DS (and siblings) ages 2-12 will have the opportunity to learn from a variety of presenters who will offer fun and learning activities from Tumblebus and Karate to Stranger Danger and Dealing with Bullies. Children will be supervised by students in IMDSA’s Student Learning Program. This program allows university students interested in a career that serves those with Ds the opportunity to learn what their text books do not teach them about Down syndrome. Teens and Adults with DS (and siblings) will have the opportunity to learn a wide variety of topics from budgeting and relationships to Tae Kwon Do and Art with 20 interactive workshops throughout the weekend to choose from.

Additional events for the weekend will include 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 and the Family Awards & Celebration Banquet & Dance with self-advocate Jennifer Katz and Comedian/Musician Dan Kulp.

Early registration will end on June 26^th. Late registration will be available at the door.  For more information and how to register for this event visit www.imdsa.org or call IMDSA at 888-MDS-LINK or DSAGC at 513-761-5400

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.