MOSAIC MOMENTS

International Mosaic Down Syndrome Association (IMDSA) is about to enter its 9th year as a nonprofit organization. Before IMDSA, there was very little information and virtually no support for those with mosaic Down syndrome. For parents of children with mosaic Down syndrome who are less than 9 yrs old, this is a hard image to grasp. For them, the online support group has always been in place, answers to their questions have been just an email or telephone call away. But for those parents whose children are over the age of 9, they remember what it was like before IMDSA.

As a parent myself, I was searching for information. I wanted to connect with someone who could provide support and information. For the first 14 yrs of my son’s life, I didn’t have that kind of outlet. Instead, I took things as they came. I raised my son the best I could with absolutely zero information on what mosaic Down syndrome meant for him.  Which sometimes is not a bad thing, but if I had had the information and support when he was young, I would not have felt so alone in raising him. 

This is how IMDSA was born. Several parents and I got together online and continued to talk with one another about our children. Finally, I suggested that in order for us to all have the answers that we needed, we would need a nonprofit support group that would provide not only support, but also information and research to everyone throughout the world interested in mosaic Down syndrome. We knew nothing about non-profits, we knew nothing about mosaic Down syndrome, we knew nothing about running an organization. The rest….as they say…is History!

For the past 8 years I have been serving as IMDSA’s president. I have had the honor and privilege to learn among families and professionals and have become one of the very few top-most experts in mosaic Down syndrome in the world. If you have a question about mDs, regardless if you are a parent, individual with mDs, or a professional, I can more than likely answer your question. I am glad that I have been able to help others. This is what I was born to do! This is why my son has mosaic Down syndrome-so I could help others who are now walking in the shoes that I have worn out on both sides!

In November, IMDSA will have its elections for the 2010-2011 Board of Directors. No one has ever even attempted to be nominated for the role of president for IMDSA. I think they assume that they could not do the same job that I do. Maybe they think they don’t know enough, or that they could not fill my shoes.  Maybe they think I would stop helping if I were not president. Or, maybe they just don’t realize that this position is available.

So, I am putting this out here now, in case you didn’t know.  All positions are available for nomination. If you have good organizational skills and can devote a few hours a week, if you have compassion for those with mosaic Down syndrome, if you understand that holding a Board of Director position with this organization means commitment, dedication and passion, then you could be part of IMDSA’s Board of Directors for the next two years!

There are many positions available at IMDSA! Please click here and read each position and find out which one might be right for you!

If you have questions, I have answers! Email me

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

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

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

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

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

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

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

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

To All

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

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

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

So please know you and your volunteers are the best.

Thank you again

Eli Miller  D.O.B.  08/25/09

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

Dear Elijah,

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

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

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

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

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

Love, Mommy

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

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

HAPPY BIRTHDAY ELIJAH! WELCOME TO THE WORLD!

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

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

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

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

Legislative Alert - Don’t Water Down IEP Goals

by Yael on August 25, 2009

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

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

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

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

ACTION ALERT

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

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

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

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

Comment:

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

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

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

Thank you for the opportunity to submit my comment.

Sincerely,

Your name

Thank you for your immediate attention to this alert.

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

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

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

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

Normal Syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

Termination is an option.

Shall I book an appointment?

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

Bob Lincoln, author

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…..