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Archive for the 'Child Information' Category

Jun 11 2009

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

 

 

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!!

 cole.jpg
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 50th Anniversary of the discovery of the extra 21st 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

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May 31 2009

Not Another IEP Meeting!!!! Get IEP Help Now!

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.

 

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May 28 2009

Kid Konference Schedule Complete!

Two Down and One To Go! A few weeks ago I posted the main conference schedule for our Down Syndrome Research & Awareness Conference. If you missed that, you can view it by clicking here .

 

I am happy to report that we now have our Kid Konference schedule complete and published on our site for everyone to view. This is for children ages 2-12 divided into 3 age groups. (Down syndrome, mosaic Down syndrome and sibs included)

 

Many families have expressed their concern  about who is watching their children. I know that it is difficult to leave your child with a complete stranger for the day, even if it is just across the hallway from where you will be!

 

The children will be supervised by Genetic Counseling Students, OT Students, ST Students, PT Students, Special Education Teachers and Student Teachers and Medical and Nursing Students.  This is through our special Student program that we run each conference to teach these students what it is really like to have Ds or mDs and they always have a great experience and lasting memories of our conference! Students have always expressed that what they learned by this hands-on experience was nothing compared to what they were learning in school and they also have the opportunity to sit in on workshops of their choice to further their profession. We preform a background check on each student before they are allowed with the children and there is never just one adult alone with the children.

 

If you are a student and are interested in this program, just contact me and I will be happy to help you!

 

Now… for the Kid Konference Schedule just click here. 

 

I should have the Youth Conference Schedule up by next week!

 

If you have not yet registered you are really running out of time!!!!


MySpace Countdowns


 

 

You can click below to register!

 


 


 

If you need financial assistance to attend this conference please click here for more information.

This conference is going to be awesome! I hope to see all of you in Cincinnati Ohio in July!

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Apr 09 2009

Happy Easter!

This weekend I am going to take a much needed break from it all. With Easter this Sunday, and my hubby, Glenn coming home this evening, I am going to be off the computer for the next few days. As a Christian, this is the most important holiday we have. It helps us to remember that Jesus died on the Cross to forgive us of our sins. If you are not a Christian, that is OK. I am not saying you have to be. But since I am I can only talk about what I know!

So, today I thought I would give you a little background on the Easter Bunny, Easter Eggs, Jelly Beans, and activities you can do with your child to help them understand Easter.

According to History.com the Easter bunny first arrived in America in the 1700s with German immigrants who settled in Pennsylvania and transported their tradition of an egg-laying hare called “Osterhase” or “Oschter Haws.” Their children made nests in which this creature could lay its colored eggs. Eventually, the custom spread across the U.S. and the fabled rabbit’s Easter morning deliveries expanded to include chocolate and other types of candy and gifts, while decorated baskets replaced nests. Additionally, children often left out carrots for the bunny in case he got hungry from all his hopping.

Easter egg hunts and egg rolling are two popular egg-related traditions. In the U.S., the White House Easter Egg Roll, a race in which children push decorated, hard-boiled eggs across the White House lawn, is an annual event held the Monday after Easter. The first official White House egg roll occurred in 1878, when Rutherford B. Hayes was president. The event has no religious significance, although some people have considered egg rolling symbolic of the stone blocking Jesus’ tomb being rolled away, leading to his resurrection. 

Eggs have long been associated with Easter as a symbol of new life and Jesus’ resurrection. Another egg-shaped candy, the jelly bean, became associated with Easter in the 1930s (although the jelly bean’s origins reportedly date all the way back to a Biblical-era concoction called a Turkish Delight). According to the National Confectioners Association, over 16 billion jelly beans are made in the U.S. each year for Easter, enough to fill a giant egg measuring 89 feet high and 60 feet wide. For the past decade, the top-selling non-chocolate Easter candy has been the marshmallow Peep, a sugary, pastel-colored confection. Bethlehem, Pennsylvania-based candy manufacturer Just Born (founded by Russian immigrant Sam Born in 1923) began selling Peeps in the 1950s. The original Peeps were handmade, marshmallow-flavored yellow chicks, but other shapes and flavors were later introduced, including chocolate mousse bunnies. 

I found a great site that is full of children’s activities for Easter. This has recipes, color pages, songs and crafts. Click Here for that page.

If you celebrate Easter I hope you have a happy and safe one!

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Apr 08 2009

Kid Konference In Cincinnati Ohio July 10-12

If you follow me on Twitter or Facebook you have seen my announcement of the Juggler and Magician that will be at our Friday evening reception during the Down Syndrome Research & Awareness Conference in Cincinnati. We found these guys at the Amazing Portable Circus! They have so many attractions it was hard to decide! We are still working on another act with them and as soon as I have information I will pass it on. We are all getting very excited about all the great things we have planned for everyone regardless how old they are!

I asked my boys ages 12 and 22 what they think they would like to do and what they think those who are younger and those who are older would be interested in as well as their own age group and they gave me some very exciting ideas that I am not going to share with everyone yet. I have to make sure their ideas will work, but if it all goes according to plan, this will be a weekend to remember for everyone involved! I appreciate their input and between our Conference Coordinator, Brandy Hellard and the boys suggestions and everyone else brainstorming, I think this is going to be a conference that will knock your socks off! 

One thing I can share with you is our opening act for the Kid Konference! We have secured a great Magician to open up the Kid Konference with a bang! Jason Jacobs is not only a Magician, but also a school teacher! He is fantastic with kids and no matter what their age, he can mesmerize them! 

The goal for our Kid Konference is to make it so exciting the kids will not want to leave even when Mom and Dad come to get them! If we accomplish that goal, we have done a little magic of our own!

I wanted to share a video of Jason Jacobs with you. This is a bit long, and seems to start out blurry, but stick with it and let your kids see it too! This is going to be fun! If you haven’t registered yet for the conference CLICK HERE! We are filling up quick and I would hate for anyone to miss out! There is Financial Assistance Information to attend the conference on this page as well.

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Apr 06 2009

Mystery Diagnosis Tonight! Hannah Hannum

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.

hannahjpg.jpeg

 

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.

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Apr 03 2009

Mystery Diagnosis: Isabella Johnson

 

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

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

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

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

 

 isabella-4-jpg.jpg

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

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Apr 02 2009

Big News Revealed!

This week, I have been giving clues each day on Twitter and Facebook about some very good news that would impact International Mosaic Down Syndrome Association and families of children and adults with mosaic Down syndrome.

When I began at the first of the week I gave the clue, “Once upon a time there was a little girl…”

Then Tuesday I realized that we had TWO major announcements instead of just one! But, both began with “Once upon a time there was a little girl…” so we were still good.

So, Wednesday I had two clues I had to give….

Clue # 1: this little girl got very sick & no one knew what was wrong with her. After testing, they found out she had…

Clue # 2: this little girl had mosaic Down syndrome but that didn’t stop her from following her dreams. After high school she married &

Then Thursday I gave these clues:

Clue # 1: After testing she had..Leukemia and began chemo. During chemo they found the real reason for the leukemia cells.

Clue # 2:  After high school she married & they moved away and opened a restaurant. Then they had a little girl.

So, now I have some final clues and will let you all know what all this means!

Final Clue # 1:  The reason this little girl had Leukemia was because she had mosaic Down syndrome. But no one knew about it!  And, without knowing about these extra chromosomes, the doctors were giving her what is considered toxic levels of chemotherapy for someone with mosaic Down syndrome or Down syndrome. Under most circumstances a person with mosaic Down syndrome or Down syndrome will die with the chemotherapy given under normal circumstances. For those with this extra 21st chromosome, a different protocol is followed. The good news is, this little girl survived and is in remission! But, that is not the exciting news I am sharing! So… stay with me here and keep reading…

Final Clue #2: Their little girl did not have extra chromosomes. This is not a huge surprise because people with mosaic Down syndrome have a percentage of cells with the extra 21st chromosome and the remaining cells are unaffected. If the cells are not in the reproductive organs, the chance of having a child with Down syndrome is much less.(not impossible, just much less) Last year, this couple attended IMDSA’s 2007 conference in Richmond Virginia and Melissa Bishop (this individual) was our banquet speaker. Last year, the found out that they were expecting another baby!

 

Conclusion and Finally the Reveal!

Big News for Clues #1: Hannah Hannum’s story is a very interesting one and a very important story to share with others. There are numerous cases of undiagnosed individuals and their lives could be in danger simply because they do not know they have mosaic Down syndrome.

This Monday, April 6th, The Discovery Health Channel will air Hannah Hannum’s story on Mystery Diagnosis at 10:00pm EST. We at International Mosaic Down Syndrome Association are very excited about this story airing! We hope that others will hear Hannah’s story and many lives will be saved from medical mistakes that can be avoided. In addition to Hannah Hannum on this show, Isabella Johnson will play the younger Hannah in the reenactment. This was a luck of the draw without a doubt! Hannah and Isabella-both having mosaic Down syndrome which is seemingly rare-live in the same city and were able to do this taping together.

 

hannahjpg.jpeg, hannah hannum, mystery diagnosis, mosaic Down syndrome, leukemia, International Mosaic Down Syndrome Association, Discovery Channel, Discovery Health,

Hannah Hannum

As I write this, we are finalizing IMDSA’s home page for information on these stories as well as many other late or misdiagnosis stories. So, please click here and if it isn’t on at the time check back because it will be up soon!

 

 

 

Big News for Clues # 2: Friday, April 3 Adam and Melissa Bishop are expecting their second child-a son! AJ is scheduled to come by C-section and hopefully tomorrow I will have more updates on The Bishop’s and their new bundle of joy!

 

img_3101jpg.jpeg, Melissa Bishop, mosaic Down syndrome, reproductive organs, Down syndrome pregnancy

Adam & Melissa Bishop

Congratulations Adam &  Melissa! I can’t wait to see pictures of AJ!

 

 

 

 

 

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Mar 28 2009

Children’s Conference for Down Syndrome Research & Awareness Conference

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!

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Mar 27 2009

When You Realized The Image Was Wrong

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

 

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

 

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

 

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

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