MOSAIC MOMENTS

I have said many times that Family isn’t just who you are born into, it is who you meet along the way. Family is someone who you share with, you laugh with, you celebrate with, and you cry with. Family is someone you can lean on when you need a shoulder, and someone you know you can depend upon to be there with you for not only your happy moments, but also the most devastating.

I am fortunate to have a family of 1000+ through International Mosaic Down Syndrome Association as well as the entire Down syndrome and mosaic Down syndrome community.

Last October, I told you about one of our family members, Gideon,  in my 31 for 21 series. Gideon was born with mosaic Down syndrome. You can read that story here. 

We all fell in love with Gideon and his infectious laughter and sparkling eyes! Our family began following Gideon and his milestones through the Youtube channel his mom, Marriah, set up to chronicle his life.  You can see all these videos by clicking here.

Then, in March, Gideon took his first steps and there was a shout of triumph throughout the world among our family because like all families, we rejoice with every step, no matter how big or small. You can read more about that here

Just weeks after Gideon’s first steps, he was admitted into the hospital with heart and lung complications. Gideon’s heart problems were more complicated than typical heart problems associated with Down syndrome. He had several heart surgeries, but continued to struggle.  You can read more about that here.

Since this time we have all been holding our breath and saying our prayers for Gideon and his mom Marriah.  Gideon has had quite a battle in his two years of life. And although a Mighty Warrior, Gideon decided that he was through fighting this battle. 

Together, our family is grieving the loss of our mighty warrior, Gideon. On Oct 7,2009, sweet little Gideon got his angel wings. As a family, we are all grieving. Not for Gideon as much as for Marriah. God has a plan that sometimes there is just no way for us to understand. I am glad that we had Gideon to show us what mattered most in the world, if only for 2 years. For such a tiny little warrior, he had the power to make a difference in hundreds of lives and we are better people for have knowing him. 

Our thoughts and prayers are with Marriah and the rest of their family. We are hoping to set up a donation fund for them, so you can help Marriah with expenses. I will be posting that as soon as it is available. 

Imagine wearing this dress to the prom this Spring! Or a Quinceanero or Sweet 16 party. Or maybe you have a formal outing or special Holiday party. But of course, you could not afford this brand new Davinci Original designed with silver embroidery and sequence. Its worth $800 and not many can afford an $800 dress!

The good news is, you CAN afford this dress! And, you also will be donating to a great cause in the process! The Soto family in Michigan has decided to raffle off this beautiful dress for only $20 per chance. Proceeds will go to International Mosaic Down Syndrome Association . The raffle ends on October 15th and you can purchase your chance to win at http://www.firstgiving.com/dress 

Even if you don’t need a dress like this, you can sell it on ebay or somewhere else after you win and imagine the profit you would make! Your donation is tax deductible, and no one can get a dress this beautiful for $20!

For the past several months, IMDSA has been monitoring the proposed US Health Care Reform. The way the current wording is, in this proposed bill it is not certain that individuals with developmental delays, medical conditions, or genetic conditions would receive health care, the therapy services that they currently receive, or adult and elder care such as assisted living or nursing care.

Our first priority is always our families. With many of our families living in the US, we realize that this is a deep concern for you. We want to assure you that we are in contact with many of the legislators and we do not plan to allow this bill to pass with its current wording.

This coming Wed, Sep 16th, a press conference will be given in Washington DC with many concerned families along with Congresswoman Cathy McMorris Rogers. In the press package that will go along with this press conference, we ask for families to include stories of their loved ones and how this bill would affect their loved ones in its current vague wording. This story needs to be by American families and must be no more than one page in Word and a picture needs to be included on the page. Because of our quickly approaching deadline, all stories must be received no later than this Sunday afternoon.

Please send your attached story to my email address at Kristy@imdsa.org with the subject line Health Care Story.

I know that many of you have questions regarding this bill. We have those same questions. We will keep you updated as we receive new information.

Comedian ventriloquist, Jeff Dunham has made audiences laugh for decades with his circle of friends, Peanut, Walter, and Jose Jalapeno on a Stick. The majority of his act pokes fun at all races and religions, however Dunham is quick to remind his dummy counterparts that the remarks are politically incorrect and often hurtful to those hearing them. 

On Friday, Sep. 4th, Dunham and “friends” made their appearance to College Station, TX as the headliner of Texas A&M First Yell kick off. As expected, the large stadium was filled almost to capacity with the great anticipation of the laughs the evening would produce. However, the laughs faded when Jeff Dunham and his dummy Walter began a conversation that would demean those with intellectual disabilities.

Walter is depicted as a grumpy, white, old man known for his opinionated sarcasm and often puts down those of other races. During his “conversation” with Dunham, he said that Dunham was a “Retard” and made reference to Dunham riding “The Short Bus”. After Walter used the word “Retard” twice, instead of correcting Walter (as Dunham does all of his puppets when they use hurtful words) he too used the word “Retard” and laughed it off.

However, the majority of the audience was not laughing. 

The past few years, there has been a growing movement to “End the “R” Word” by advocacy leaders and youth who agree that the use of this word is cruel and offensive and considered “Hate Speech” just as any other slur. In March of 2009, the Special Olympics created a national day to “Spread The Word to End The Word” and thousands followed to make this type of language stop.

As a Jeff Dunham fan, my family and I were very excited to attend this evening of laughs. Before we left, I had reminded my 13 yr old son that some of the things said may be inappropriate for his young age. He asked me what I would do if anyone performing used the “R” word during their act. Cringing inwardly, I jokingly told him that I would rush the stage and give them a lecture on the spot! Of course, I didn’t expect the headliner to be the one to use this language. When it happened, both of my children looked at me worried what I might do.  As English author,  Edward Bulwer-Lytton wrote in 1839, “The pen is mightier than the sword”, or in this case….”the keyboard is mightier than rushing the stage”

I wrote Jeff Dunham regarding the act and why using this word is not only offensive, but also opens doors for bullying in the school and the workplace. I educated him on the growing number of advocates backing the Special Olympics to end the “R” word.

I did not ask Mr. Dunham to stop his act. In fact, I didn’t even ask him to quit saying the “R” word. Instead I encouraged him to use this as an important tool to teach his audience the importance of words and how hurtful they can become. I asked him to do what he does when any of his dummies say something that might offend someone.  I asked him tell Walter that using the “R” word is hurtful and hateful and that it is not right to use words that will make fun of those who can’t speak up for themselves.

I hope that Mr. Dunham heeds my suggestions. If you would like to suggest the same you can email him at fanmail@jeffdunham.com

Many ask the question of why research for Down syndrome and mosaic Down syndrome is so important. Some argue that their child “isn’t a guinea pig” and they don’t want them to be poked and prodded and examined by every doctor that comes along. I used to be one of those parents. I was tired of everyone grabbing my son’s hands as we walked along the corridors of the pediatric wing of the hospital looking for the non-existent simian crease that would explain his extra chromosomes. I wanted him to just have a “normal” life where people didn’t look at him differently. And, NO, he wasn’t a guinea pig!

However, I think back to those 20+ years ago and I wonder if I had been more cooperative would we have more information on mosaic Down syndrome now? What about complete Down syndrome? Do my son’s mixed chromosomes hold the key to the questions we all ask about our “chromosomally enhanced” children? 

Imagine a different world. One without any research at all. Your child is born and they discover that there is a difference in their physical characteristics. That alone allows them to tell you that your child has Down syndrome. However, this is as far as they can go with their information because there is no research on Down syndrome, so there is no information. Yes, they can tell you of the other babies that were born with this. And, they can tell you that more than likely your child will not live past the age of 10, since there is no treatment or surgery for the heart defect or the thyroid condition that your baby was born with. They tell you to put your child in an institution to die and forget you ever had that tiny bundle of joy. Because since there is no research, the doctors don’t know about the treatments, the surgeries or the benefits of keeping your child at home to raise and love and teach. And, without the research, these children do die by the age of 10, if not far before that.

And, of course, without any research, a child with mosaic Down syndrome would never have a diagnosis. They would go on with developmental delays just slight enough to not get the important therapy that they need, and like the children with complete Down syndrome, most would not live past the age of 10. 

Imagine being told that your child has a genetic disorder that they know nothing about. Imagine being told that there is no treatment, no help, no ideas, and no future for your child. This is what life would be like if there was no research for Down syndrome. This is what it was like for me two decades ago when my son was first diagnosed with mosaic Down syndrome. 

Thankfully, in this new 21st century, there is research for Down syndrome and mosaic Down syndrome. Thankfully, we do know more about this extra chromosome than we have ever known before. Unlike most Advocacy organizations, we don’t look for a “cure” for Down syndrome, instead we look for “treatments” to help those with these extra chromosomes live long, fulfilling lives. 

Although we do know more than we ever have before, there is still a lot more to know about the 21st chromosome and all that it holds. Without more research, we will never know more and we will never find the right treatments to help these individuals.

But with YOUR help we can do this! 

International Mosaic Down Syndrome Association funds important research studies that focus on both complete and mosaic Down syndrome. We carefully seek out research that we know is important to the growth and development of individuals with this extra chromosome and their families. You can be a part of this cause by making your own personal page telling your friends and family why Raising for Research is so important to you. This page allows you to add pictures and videos, you own personal story, and raise money for this important cause. Raising for Research ends on Oct 31.

Please Click Here to make your page today!

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.”