MOSAIC MOMENTS

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.

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!

In 2007, International Mosaic Down Syndrome Association was approached by the writer/producer of the movie Mr. Blue Sky. Mr. Blue Sky is a wonderful movie about three children (2 girls and 1 boy) who grow up together and face the obstacles that most children grow up with. One of the girls in this movie has Down syndrome.

In the first of the movie, the boy’s mother kills herself. However we don’t really know why until the end of the movie. Because of this, the boy’s father (played by Home Improvement/Family Feud- Richard Karn) becomes an alcoholic.

As they grow up, the boy and the girl (without Ds) (played by Mary Kate Schellhardt) start dating but they really have too many differences to make it together. Then, the boy (played by the late Chaney Kley) winds up falling in love with the girl with Ds (played by Ashley Wolfe) and despite a lot of contriversy they wind up getting married.

IMDSA has been a major supporter of this movie from the beginning of its release. Although many feel as though this is unrealistic, we at IMDSA know that it is very possible for individuals with Down syndrome to marry individuals without Down syndrome because it happens within our community of mosaic Down syndrome quite often. (just ask Casey and Jennifer ) 

You can purchase this DVD and see trailers of the movie by clicking here.

So….. our BIG NEWS  for the day.

I just got a message from Tom Lee-the writer/producer of Mr. Blue Sky

Kareem Dale, the Special Assistant to US President Obama for Disability Policy will be traveling to Serbia on June 10th. The living conditions for people with Down syndrome in Serbia is horrible with the life expectancy of these individuals only reaching 10 years old. It is because of the attitudes of those with disabilities that these individuals are placed in institutions with deplorable conditions and left to die.

It is Mr. Dale’s hope that by showing this movie to the government officials in Serbia, perspectives will change. They will see that individuals with Down syndrome are just like everyone else. They can grow up to be wonderful members of the society and add great value to their communities.

Our movie is truly making the difference that it was created for! To show everyone that people with Down syndrome have the same hopes, the same dreams, the same ambitions and with acceptance, they can reach those dreams and goals! It is just a matter of letting them do what everyone else does and not holding them back from all the can accomplish!

This is a huge step in the right direction and I pray that the government of Serbia can change their perspectives, even just a little, and realize that people with Down syndrome are PEOPLE!

Yesterday , I described just a little of what it was like the day before and days-years after I had my son, Tim.  This morning when he awoke, I sang Happy Birthday to him. Tim, being the literal man that he is, told me it wasn’t his birthday till 3:45 pm. (the time he was born) Unfortunately, I was not home at 3:45 because I had to go to the store to buy Tim’s favorite dinner. Chili Enchiladas and Cheese Cake for desert. (yeah… it sounds gross to me too!)

So when Garrett and I arrived home we loudly sang Happy Birthday and it was official! My baby boy is 23 years old!

Twenty-three years can go by very quickly. It seems like yesterday that I was outside in the front lawn encouraging him to take his first steps, to say his first sentence, or when his older brother Arron, taught him to ride a bike. It doesn’t even seem that long ago when he graduated high school! And as I look back on the last twenty-three years, I see not only changes in Tim, but also changes in me.

Sure, I have a few more gray hairs than I care to share. Most definitely, my jeans size is no where near what it was back then. And the energy I had to chase around a hyper-active two-year-old is long gone! But there are other changes in me that are not as physically visible as the others.

Back when Tim was first diagnosed with mosaic Down syndrome, I felt very lost and extremely alone. I did not have a clue what mosaic Down syndrome was and I wanted more than anything to have something concrete that I could hold on to. Something that would tell me what this meant, what to expect, what to be worried about, what not to be worried about. I was so frustrated when there was no information out there. Yes, there was plenty of information on Down syndrome. And I tried to use that information to compare notes. But none of it really fell in line with what was happening with Tim.  He was either meeting his milestones way before what the books were saying or way after. He wasn’t having trouble in some areas that the books said he should have trouble in. And when I tried to attend a Ds meeting, I was shunned by the other parents. They made it clear that I did not belong.

So, I just raised him the best I could with the zero information I had. I didn’t know what to expect, so when something came up I dealt with it. Which really is not a bad way to live. If you worry about the unknown that may never happen, you will miss out on all the great things that are happening now!

However, as a parent, I know how important it is to have something in your hands that you can read and know that everything is going to be alright.

Over these past 10 years, I have gained a tremendous amount of knowledge on mosaic Down syndrome. I have spoken with countless doctors, researchers and the real “experts”-parents and individuals with mosaic Down syndrome. I have asked the hard questions and insisted upon answers that I could easily understand.

Over these years, it has always been my goal to make sure that no parent ever feels alone, as I did, in raising their child with MDS. We at IMDSA have accomplished that goal! Every family knows they are part of a much larger family. When one family is sad, we are all sad. When one family is happy, we are all happy! But, there is still so much that families need to better understand mosaic Down syndrome. They need the concrete information. They need something to hold on to-to open up and refer to when they have a problem or a question. They need information and they need more than just a blog or a research paper. Families need to know what mosaic Down syndrome is, what it means, what to expect, and what they can do to help their child become the best person possible!

They need what I so desperately wished for 21 years ago when I received the diagnosis for Tim.

I know this is “Taboo” for writers to do this. But, I am doing it out of my faith in God. Because I know that He has lead me over the years to do this and with His help I can accomplish it! So, although authors are not supposed to announce things such as these I am going out on a limb here and hope I don’t hang myself completely!

I am in the process of writing a book about mosaic Down syndrome.  I am half-way finished now and after the conference I will devote the majority of my time to this book. I will still blog every now and then, so please stay with me and if you are subscribed please don’t leave, so when I do write, you wont miss anything.

I want to thank my loyal readers here for all your questions this past year. You have helped me grow and helped me learn even more. I am confident that with God’s help, I will be able to bring you the information that you need to help someone with mosaic Down syndrome. This person may be your child, your patient or client, or yourself. I will update you as I can and of course continue writing more about our upcoming conference in Cincinnati! (I hope to have schedules ready for the Teen and Adult Conference and Kid Konference by next week!

23 years ago today I was lying on a narrow hospital bed waiting for my baby’s lungs to develop before delivery for the next day. The next day, was D-Day. This day would mark 32 weeks in my pregnancy. Throughout my pregnancy I had Placenta Previa-basically this means that my placenta was falling out. So, I was put on bed rest and when I continued to have trouble I was admitted indefinitely into the hospital and had been there for a month before my water broke-which marked my indefinite D-Day.

I was young-only 20 yrs old. It never occurred to me that babies died. It never occurred to me that having a premature baby was a dangerous thing. It never occurred to me that at 20 years old, I would come face to face with death-not just for my baby, but also for myself. And, it never occurred to me that my baby would be born with anything out of the ordinary.

Oh sure, I knew these things happened….to other people. 

So, 23 years ago today I lain on this hospital bed in a “semi-private” labor room in which I had various “room mates” for my three-day stay. I watched them come and go and it never occurred to me that within the next 24 hours my life would change forever. 

On May 19, 1986 I had a beautiful baby boy. I wasn’t able to see him till the day after he was born because I was too weak and far to sick from the loss of blood since I had refused a transfusion because of the high risk of AIDS in transfusions back then. 

Having a baby changes your life. This one definitely changed mine. I could say it was because I was near death. Or even because he was too.  But that is just where the story begins. It wasn’t life-altering at that moment. Probably because I was far too young to realize the true danger that we were both in. Even when my doctor came in to my room with tears in his eyes as he explained that I was dying and there was nothing more that he could do, it never occurred to me that I would actually die. And thankfully, only by God’s grace, I didn’t die. And neither did my baby.

The beginning of my life-altering moment came 2 years later with a blood test that revealed that my beautiful baby boy had a few extra chromosomes. The moment when they told me that he had mosaic Down syndrome and there was nothing in the literature; no book, no pamplet, not even a flyer, that could tell me what to expect with this diagnosis, my life changed. 

Many would think that my life changed for the worse. After all, I had no information, I had no one to talk to and compare notes, I had no support. But I had my “Mommy Instincts”. And as the years went by, I realized that raising a child with mosaic Down syndrome was no different than raising any other child really. Sure, we had to make up some rules as we went along! Definitely, I had a few Pity Parties throughout the years. But the thing I learned the most is, having a child with extra chromosomes is no different than having any other child. And I have others to compare it to! 

23 years ago tomorrow, my tiny 4 lb 4 oz baby boy was born via Emergency C-section. He had his Mommy’s dark brown eyes and was so tiny that his 6 inch high Teddy Bear was more like a Grizzly to his small frame. He loved to snuggle up to me and fall asleep while I rocked him gently in the squeaky old  wooden rocker in the “growers room” at NICU. I loved the way he would yawn and crinkle up his face like a miniature wrinkled old man. I loved the way he smelled when I held him and when I had to leave him I would smell my shirt for the rest of the day-just to try to stay close.

Now, 23 yrs later, that tiny baby is a grown man who takes care of his mom. He is always sensitive to my needs and jokes that he is amazed that I lived through his hyper-active years. He says that he is glad that he has mosaic Down syndrome because without it, he wouldn’t be the person he is today.

I know that if Tim did not have mosaic Down syndrome, I would not be the person I am today. I would not be as strong as I am. I would not have the knowledge that I do. I would not have the wonderful extended family that I have. And, International Mosaic Down Syndrome Association would not exist the way that it does. Families would still be left out in the cold wondering what this means for their children.

Tomorrow is my baby’s 23rd birthday. For this special day, I have a very important announcement that you may not want to miss.