MOSAIC MOMENTS

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!

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

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

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

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

As parents of children with Down syndrome or mosaic Down syndrome we often worry about so many things when they are first diagnosed. Yesterday, I asked what your biggest concern was when your child was first diagnosed. Most of the comments on this question were united in that they worried more about themselves instead of their child’s condition. I thought that was an interesting take on things, but not at all wrong!

When you first have a child, any child, your whole entire life turns around! All of the sudden you are completely responsible for this tiny life and your parenting instincts come into play. However, when you have never had a child before, this can be a very scary experience and it really doesn’t matter if they child has Down syndrome or not! In these instances from our readers these children were their first born. (to the best of my knowledge) So, of course they were worried about how having this child was going to change their life! And, when you add “Dr. I have bad news” into the equation, you are more than likely going to worry all the more! You worry about how it is going to affect your lifestyle. I think the biggest thing that comes to mind is that you wonder if you will have to make changes to the way you live. The answer is in some ways Yes and in some ways No. 

Yes, because you will find that when you have a child, any child, you can no longer jump up at 11pm and say, “Hey, lets go out!” Because with any child, every trip is a planned process of packing half their life into a diaper bag, and still planning around naps, feeding, sickness, weather, etc. And, yes, your life does change when you have a child with any special needs, because you do a few things differently than you would a child without special needs. You may have more doctor appointments. Your child may need therapy to help with developmental delays. You wind up learning a whole new language that only other parents of children with special needs understands! You almost always have a medical degree equivalent to at least an MD, just without the shiny certificate hanging on the wall. Instead, your shiny certificate is that beautiful picture painted, drawn, colored or scribbled that adorns your refrigerator door.

And then, the answer is also No. No because you learn that Life Goes On! And, because no matter what, your child is a child first! Your child will still be mischievous and get into trouble even though they knew better to do what ever it was they ventured out to do. Your child will still smile and laugh and love you unconditionally just like any other child. Your child will frustrate you, worry you, scare you, make you happy, make you proud, and make you wonder what you ever did without them!

I have five sons. Each are a challenge in their own way. And, each have made me angry, embarrassed, sad, frustrated, happy, and extremely proud. 

Is it different to have a child with Down syndrome or mosaic Down syndrome compared to having a child without extra chromosomes? Yes! It is different for sure! But different does not mean worse!

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

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

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

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

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

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

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

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

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

To register, click here for details.

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

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

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

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

Down Syndrome Associations

The Lion’s Club

The ARC

United Way

Developmental Disabilities Council

Yellow Pages for Kids

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

Down Syndrome Associations

The Lion’s Club

United Way

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

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

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

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

What brought you here to my blog?

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

What are you doing?

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

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

What matters to you most?

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

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

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

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

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

The big news for the weekend was supposed to be all about World Down Syndrome Day. This very special day set aside to celebrate the lives of those with Down syndrome. People throughout the world who know someone with Down syndrome or have Down syndrome themselves celebrated in various ways and educated their communities about who people with Down syndrome really are.  When you google the topic of World Down Syndrome Day, you get 2,080,000 results. That is a lot of people spreading the word!

However, in the midst of all this celebration, US President, Barak Obama insulted those with Down syndrome and other special needs when making his comment about Special Olympics. When you google that, you get 3,730,000 results. Imagine if this had happened in the middle of the week! The results would have been much higher I imagine. 

It is important to remember that it doesn’t matter if you are for or against Obama being president. The fact is that he is president. A leader of a very powerful nation. Someone that many look up to. Someone who children want to be like. Someone who represents America. 

And, as a representative of America, I expect my representative to represent my feelings and my beliefs. My feelings and my beliefs are in line with what this country was founded on. That ALL people be treated equal. This does not just mean skin color, religion, or culture. This means ALL people. People with different abilities. People in wheelchairs. People with developmental delays. People who are Blind. People who are Deaf. People with extra chromosomes. People with missing chromosomes. People who are short. People who are tall. ALL people means EVERYONE.

Sure, that won’t happen all the time. Sure, there are many times when I disagree with what happens. And, yes, there is very little that I can do to change people’s perspectives.  However, I can make a difference one person at a time!

On March 31 everyone throughout the world will ban together to stop the “r” word. The Special Olympics has called for a National Day of Awareness for America to stop and think about their use of the R-word. The R-word is not “recession”, but something more hurtful and painful-”retard.”

Although Special Olympics is calling for this in America, I would like to challenge each of you, no matter what part of the world you are in to educate others in your country that words do hurt. Words do make a difference. And encourage them to stop using this word. Replace your “r” word for one much more accepting. Replace it with RESPECT. To find out more about this and purchase a Tshirt or button you can go here.