MOSAIC MOMENTS

Yesterday marked a very sad day for our family at IMDSA.  Last week we heard of a family who had received the news that their baby would have Down syndrome. Like any family receiving this news, they were shocked and afraid.  They were not unfamiliar with Down syndrome completely. They had an adult niece with mosaic Down syndrome. But in their minds, having a child with complete Down syndrome would be just unbearable. Last week, they went to a counseling session, but for some reason the father was not allowed in the room. So, this mother, scared and confused, talked with the counselor without her husband about the future of their baby. After the meeting she was resolved to abort this baby. Yesterday, although her husband was against it, sadly she followed through with her resolution and ended her four month pregnancy.

Many people may feel outraged that this mother choose to abort her baby. Some may not even care. I am not here to judge, but I do want to address why people abort their babies when discovering they may have Down syndrome.

Mainly it is out of fear. Fear of the unknown. Fear that raising the child will be too difficult. Fear that they will fail as parents. Fear that having a child with Down syndrome will “change their life”.

Unfortunately, this fear is fueled by the doctors and counselors delivering the news of this diagnosis. The majority of these professionals never know anything about Down syndrome outside of what their outdated text books tell them. They have never had the opportunity to get to know a person with Down syndrome. Yes, they deliver babies that have Down syndrome, but within a few days those babies go home to be with their families. They don’t see their first smile. They don’t hear their first laugh or first words. They don’t witness the absolute joy of the baby’s first steps. And they don’t watch this child grow up to be an adult who later finds a job and eventually falls in love.

Instead, they tell the parents that having a child with Down syndrome will be a burden to their family. They tell the parents of all the worst case scenarios. They paint a picture of a very ill child who will need constant medical care that would skyrocket the family’s financial limits. They tell the parents that their child will not read or write. They tell the parents that the child will require so much care that their other children would suffer. They tell the parents that the strain will be far too much to bare and their marriage may crumble under the burden of this child. Then, they “suggest” (strongly) that the parents abort the baby and try again later.

Doctors are supposed to be right. They are, after all, the “professionals”. And, in a lot of cases, doctors are right. But in this case, they are wrong. 

People with Down syndrome can have health problems. They can be born with heart defects. They can have Thyroid disease, digestion problems, and even Leukemia.

Of course, so can everyone else in the world who doesn’t have Down syndrome. When a child is born with a heart defect sometimes surgery isn’t even needed. If it is needed, most children bounce back pretty quickly after surgery. If they have Thyroid disease, a simple pill a day will keep that under control. Digestion problems? It depends on what the problem is. Most of these can be controlled with diet, some require surgery or medicine. Leukemia? The good news is, if your child has Leukemia and has Down syndrome, they have a much higher survival rate than those without Down syndrome. Will it cost you more to have a child with Down syndrome as opposed to having a child without Down syndrome? Read Here about those real statistics.

Children with Down syndrome usually do require extra help in school, but that doesn’t mean they can’t read or write.  It may take them a little longer to get it, but they will get it.

Will your other children suffer?  Actually, current research suggests that siblings of children with Down syndrome are more positively affected than negatively. You can read that research here.

Without a doubt, having a child with Down syndrome will change your life! But not in the ways that most people think.  Having a child-with Down syndrome, mosaic Down syndrome, or no syndrome at all, WILL CHANGE YOUR LIFE! Because having a child makes you a completely different person than you were before. You are responsible for another human being. And that is a big responsibility. The child will look to you for guidance, shelter, nourishment, and love.

And, if you happen to have a child with Down syndrome, then you may learn things a little differently than you would if your child does not have Down syndrome. Please make note that I said, “you may learn things a little differently”. Having a child is a learning experience. It doesn’t matter if they have Down syndrome or not. You will screw up along the way. You will NOT be the perfect parent. Your child will not be the “perfect child” either. There are no guarantees in life.

If you find out that you are pregnant and that your child may have Down syndrome or mosaic Down syndrome and you feel as though you can not be a parent to this child. That is Ok too. Some people just don’t feel like they are cut out to be a parent of a child with Down syndrome. But before you go through with your abortion, please keep in mind that there is a two-year waiting period for families who want to adopt a child with Down syndrome.

Why is there such a long waiting period?

Because over 90% of babies with Down syndrome are aborted each year and over 90% of families want these children more than any other child in the world!

No one will blame you for putting your child up for adoption. In fact, they may admire you just a little bit more for the extreme courage it took for you to say, “I want the very best for my child.”

When CJ Field, creator of The Traveling Afghan, challenged Down syndrome bloggers to blog about the ties that bind us in the Down syndrome community for a chance to win “An Afghan of your Own”, I couldn’t wait for my chance to write.

As a parent of an adult son with mosaic Down syndrome, I have watched the world evolve over the past 20 years with the incredible invention of the internet. With this device, families are able to connect with one another in a way they were never able to do so before. We now have blogs, Facebook pages, Twitter, and our beloved email groups and listservs that connect us on a daily basis to provide support and information to families throughout the world. With this invention, the Down syndrome community has become one voice.

Think about your next door neighbor for a moment. What do you know about that neighbor? How much do you know about their children? Do you know when they are going on vacation and where they will be going? Do you know how many ear infections their child has had in the past year? Do you know when your neighbor is sad or happy or stressed or angry?

Now think about a family who you know online that lives thousands of miles away and the only thing in common that you share is that you both have a child with Down syndrome or mosaic Down syndrome. How many children does that family have? Do you know when they are going on vacation and where they will be going?  Do you know how many ear infections their child has had in the past year? Do you know when they are sad or happy or stressed or angry?

It is one tiny little chromosome that connects us all. This chromosome is one of the smallest in the body, but it carries the most love. You can connect with your next door neighbor if they have children the same age as yours, but when your child has that extra chromosome, you connect with other families who share that amazing addition in such a different and remarkable way. 

Why do families of children with Down syndrome connect more than others? 

Because we have all been there. No matter where “there” is. We as parents know how it feels for your heart to drop down to your toes and up in your throat simultaneously when you are told your child has Down syndrome or mosaic Down syndrome. We know how scary it is when your child has to have heart surgery or PE tubes in their ears. We know the frustration of waiting for those milestones to come about. We know the never ending alphabet soup of IEP’s. We know the worry of being accepted in the typical community.

But we also know that all these things will be ok! After a while, we realize that the extra chromosome is not a bad thing, and in fact it is a blessing because not only does it tie us to this special and wonderful community, it also allows us to see things that we never knew existed before! We know that the surgeries, although scary, quickly become a story of “remember when…”. We know that the milestones will come eventually, and when they are adults no one will wonder how old they were when they took those first steps or spoke those first words.  We know that we will get through the IEP’s and learn the alphabet in an entirely different way. And, together, we discover how to work with the typical community, so everyone is accepted for who they are and not what they have.

No matter where you go in life, no matter what you are doing, if you have a child with Down syndrome or mosaic Down syndrome, you are part of a very elite group of people. If you are in the grocery line or across the world visiting a foreign land, if you meet a family with a child with Ds or mDs, something comes over the both of you. That knowing smile, that spark that forms in each other’s eyes; with a nod of your head you feel the heart strings that have genetically attached you to this family who otherwise would be complete strangers.

And together you know that you are Never Alone….. 

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

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

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

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

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

To All

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

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

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

So please know you and your volunteers are the best.

Thank you again

Eli Miller  D.O.B.  08/25/09

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

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

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

Conference photos coming soon!

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

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!

In March, I wrote an article reminding us all of What Matters The Most. This was a celebration of the little things in life. Those small miracles that we often overlook in the busyness of our day. That was March 23, 2009. On this day, our little Gideon had taken his first steps! We were all so overjoyed with his accomplishment and his infectious laughter. Gideon is a strong willed little guy who happens to have mosaic Down syndrome.

This special event was just seven weeks ago.

Gideon was born with some heart problems that many children with Down syndrome and mosaic Down syndrome are often born with. In most cases, children are able to have a surgery to repair their heart and bounce back pretty quickly. I have heard countless parents recall the anxiety of the day their child had this surgery, only to say later that the hardest thing was to keep them still afterward and try to make them rest. 

Unfortunately, this is not the case for young Gideon. In the past two weeks, Gideon has had 3 heart surgeries and is now on a pacemaker and still being monitored very closely. Gideon is a strong little guy and like his name, he is a “Powerful Warrior”. 

But even warriors need soldiers to stand beside them to win fierce battles. Today, Gideon, and his mom Marriah, need some soldiers to stand beside them to win this battle. They need lots of prayers and as many Angels as you can spare.

The video above was just seven weeks ago of our sweet little warrior taking his first steps. 

The video below is Gideon now. 

Gideon will be celebrating his second birthday tomorrow!

Happy Birthday Gideon! 

Get Better Soon!

So, it is 12:30 at night and I was finally wrapping up my day. It has been a busy week! I decided to have a look over at my blog before I called it a night and all of the sudden I decided to go ahead and publish the schedule since we just got it on our site today…. Not that I was having ANY PRESSURE or anything!

I am sorry it has taken this long! I know you all are anxious to see what will go on during the weekend. I am so excited about the conference! This is going to be incredible for all families and individuals with Down syndrome and mosaic Down syndrome AND it is going to be extremely beneficial for all the professionals who work among our circle.

Now, I don’t have the Kid Konference or the Youth Conference schedule finished, but hopefully in the next couple of weeks we will have that ready for everyone. But I do have the Main Conference schedule. This does not include the DSA Board Meeting and who will be at the Research Appointments on Friday. But it does include everything else!

You can click here for the schedule. You need a PDF reader (like Adobe or something) to read this. If you don’t have that, email me and I will send you a document.

I know that it has been a while since I have posted a blog and I apologize to my devoted readers for my lack of writing. I have been incredibly busy with the planning of our Down syndrome Research & Awareness Conference and just have not had the time to write any more. Today, I announced our schedule for the main conference and we should have that on our site in a few days. Within a few weeks we should have our Kid Konference and Youth Conference schedules ready to go and I will publish them then.

If you have not yet registered for the conference in Cincinnati, time is running out!

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