Mosaic Moments

Ashley Noack is a Genetic Counseling student from the University of South Carolina. She has a sister with Down syndrome and she is interested in the prenatal testing and decision making process of individuals who have a sibling with Down syndrome. Specifically she wants to know if having a sibling with Down syndrome affects a woman’s choice to utilize prenatal screening, prenatal diagnosis, and ending a pregnancy for Down syndrome in comparison to women who do not have an affected sibling.

Her hypothesis is that women who have a sibling with Down syndrome will be more likely that the average woman to use prenatal screening and diagnosis but will be less likely to end the pregnancy due to a diagnosis of Down syndrome.

To do this study, she needs to find women who have a sibling with Down syndrome and are over the age of 18. She does not need any identifying information; the survey is anonymous. If you or someone you know fits into this category, and has an interest in the study, they can click here to complete the survey.

Ashley will provide IMDSA with the results of the study when she finishes next summer.

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Last Thursday Tim went with my mom and dad to West Texas. They took their travel trailer, the two labradors, and Tim and went on their way. It has been quite a while, about eight years, since they have taken Tim along with them on vacation, so he was pretty excited about it.

Well… except the realization that this would be an electronic free vacation! Totally out in the wilderness with no Internet, no Television and NO VIDEO GAMES! He does have his trusty IPod, but he and Garrett have misplaced the PSP, so he is going to be having video game withdraws before vacation is up.

Today when he called me he told me all about his day and sounded extremely tired but for sure was having fun. They visited a Ghost Town, an old cemetery, and a house built out of mud that was three feet tall and according to my mom, held a large family. My thought on that….. It was a very short, large family!

The big excitement of the day was Tim’s trip down into a valley. My mom and dad stayed at the top while Tim hiked down. While at the bottom, he heard a bear growling and quickly ended his hike!

Yeah…. I am scared now! Yesterday I was worried about Rattlesnakes and now I have to worry about BEARS!!!! I can feel the gray hairs popping out as each moment passes!

Oh well, Tim is having a great time and this is a great experience for him. He says the scenery is beautiful….not as beautiful as the Grand Canyon, but still beautiful.

This is going to be my first Thanksgiving without Tim because they will be coming home late that evening. Tim’s favorite holiday is Thanksgiving, so it was a difficult choice for him to make. (Now you know why I asked those questions last week about kids with Down syndrome eating too much!)  I will miss having him on this holiday, but just knowing that he is having such a great time is well worth it all.

From the time Tim, my son with mosaic Down syndrome, was very young he never seemed to know when he was full. He would eat until he would get sick. And, if I didn’t watch him carefully, he would sneak food out of the refrigerator or cabinets and eat everything in sight!

This was when he was about 3 years old.

Now, at 22, I still have the problem, just a little differently. I have taught him about food portions and self-control. I have taught him that he can ONLY have 2 cookies instead of the whole box in one sitting. I have taught him to limit his intake on sweets and things that are not healthy, but I have also taught him that over-indulgence of anything is not good for you.

However, sometimes no matter how much I have taught him this, he does tend to sneak things every now and then and especially if it is sweets.

A few years ago I was working outside of the home and one day I came home and Tim had eaten a whole case of granola bars! That is 48 GRANOLA BARS! Needless to say, I was not a happy camper! I told him that I hoped he stayed up all night having to expel those 48 granola bars and I hoped he didn’t get a wink of sleep! (unfortunately, he slept fine that night, so no lesson was learned there)

When talking with many other parents over the years I have found that Tim’s over eating is not exclusive only to him. And, yesterday when I was on the phone with the Prader-Willi Association I found that we are not alone in having these issues that are usually characterised in Prader-Willi.

Last year, one of our researchers had added this question about over-eating to her research, but I haven’t had a chance to get with her on the results. And, I would like to know how many more are experiencing this who have any form of Down syndrome.

So, I have made a survey with just a few questions on it. I would really appreciate it if you participated in this survey. This is for families who have children (any age) with any form of Down syndrome.

Click Here to take survey

Thanks in advance for participating. Together we can find out all kinds of information to help everyone who has any form of Down syndrome!

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The Boy Scouts of America have a great program for boys from 5 years old and up to learn important “boy things” and earn badges along the way.

When I was a kid, my brother was a cub scout and my parents were the leaders. I was a total tom-boy growing up and wanted to do everything that my big brother did! So, unofficially, I earned all those great badges and could recite the Cub Scout Promise with my eyes closed! My two oldest sons were in Cub Scouts for several years and enjoyed it thoroughly.

Most do not make it past Cub Scout. If they do, they make it to Webelos, and later, Boy Scout. Most lose interest by their pre-teen years. But, if they continue, and work hard they can eventually earn the rank of Eagle Scout. There are few that make it that far, but for those who do, it is a great accomplishment!

Matthew McClain has just earned this distinguished rank. He is 41 years old, and he has Down syndrome.

Click Here for the great news footage.

Diane–Get the tissues!

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When I was a child, I never paid attention in History class. I was bored to tears and couldn’t see why in the world I needed to know what some old dead guy did years ago! It had nothing to do with my life and since it was history there was nothing I could do about it anyway!

Connor Gifford “gets” that! He knows that kids are bored in history class and he knows that it is just a matter of putting these kids in the shoes of those in history. This great book puts you right into the moment when history was being made!

AMERICA ACCORDING TO CONNOR GIFFORD has pictures and stories of our great American heritage. Over 400 years, in fact, of American History told in a way that no matter if you are 10 yrs old or 100 yrs old, YOU will appreciate this book!

Author, Victoria Harris helped with this book and with her great writing ability and Connor’s thoughts and pictures, this book is sure to fly off the shelves everywhere! 

You can purchase your copy of AMERICA ACCORDING TO CONNOR GIFFORD by clicking here.

And, you can visit Connor’s website by clicking here.

Now, you may be asking, Kristy…What on earth are you writing about a history book in your MOSAIC MOMENTS blog for? What does this have to do with Down syndrome or mosaic Down syndrome? Have you flipped your lid??

Oh! I forgot to mention….

Connor Gifford has mosaic Down syndrome!! He and Victoria are planning to come to our 09 Research and Awareness Conference in Cincinnati, Ohio! Imagine meeting Connor and getting an autographed copy of his book! I will be the first in line, because I have a lot to learn about history! 

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There has been a lot of discussion lately through IMDSA’s support group about how to tell your child about their diagnosis of mosaic Down syndrome.

Many know, from listening to our NPR show This American Life, we chose a different approach than most do in telling their child.

However, our approach is not always the right approach and I think it all depends on the family and the situation around them.

My thoughts on this is if you speak freely about your child’s diagnosis in front of them when they are young and throughout their life, then it won’t seem like a big deal to them.

It is only a big deal if you make it a big deal.

Then, later when they are old enough to understand and they begin asking questions about their differences, you will know that they are ready to understand the diagnosis.

When Tim was 12 he asked me if he had a medical condition that I hadn’t told him about because I didn’t think he was mature enough to understand.

The question took me by surprise.

So, I told him “Yes” and left it at that.

I had kept the diagnosis from him in his young school years only because I was afraid he would use it as a crutch to not get his work done. In second grade, he had told me that he couldn’t do his homework because he had ADHD. I thought, “Wow! What would he say if he knew he had extra chromosomes?” So, we decided to keep the information secret. We had already begun doing that in school since the teachers who did know were treating him differently–not what we wanted for our son who we knew could succeed if only given the chance.

As I look back on all those years I ask myself if I would have done anything differently.

The answer is “no”. Not at that time I wouldn’t have. Our decision to keep this from Tim and the world was what worked for us at the time.

Now, if we were to begin again today in 2008…. my answer may be different. I am a stronger advocate than I was then. And, I am much older and wiser. I know more how to fight for my son’s rights and I know that today things are a little different–not much–but a little, in the way society views those with different abilities. And, I have a huge family of supporters throughout the world to back me up…something I never had when Tim was young.

The bottom line is, don’t make a big deal about it and it wont become a big deal. If your child had dyslexia you wouldn’t keep them from that information. You would talk about it freely. If your child had ADHD you would talk about it. If your child had Autism you would talk about it.

No matter what your child is diagnosed with it is what they have, not who they are. They wont, all of the sudden, think “Oh no! What am I going to do now?” It is something they have always had and when you explain it to them, when the time comes, then they have a reason for their differences and more than likely, like Tim, they will feel relieved in knowing why instead of worrying about it.

What if someone told you today that YOU had Down syndrome, mosaic Down syndrome, Autism, ADHD, or any other learning disability? After the shock, what would your reaction be?

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In 2007 Martin Harris helped raise money for British athletes to go to the World Special Olympic Games held in Shanghai, China. He had the unique opportunity to attend and watch the athletes train and compete in this world-wide Olympic event.

Martin was struck by the sincere friendships that were forming all around him. He watched as the 60,000 people from 160 countries said farewell to one another and realized that these people had formed a strong bond and had truly become friends in this short time together.

This is when Martin realized that there was a strong need for an online community and the idea for Special Friends Online was born.

Upon his return to the UK, Martin immediately got to work in developing this safe and secure environment for those with special needs to connect with one another regardless of their abilities.

Within the first few weeks of research with the team Martin had helping him, it became apparent that there was also a need for the parents and carers to keep in touch and share information, especially for those who have babies and infants with a learning disability to meet people having similar experiences and perhaps being united with support groups and people in their own area.

Special Friends Online is a message board for people with learning disabilities to talk with one another in a safe environment through email, chat rooms and the special Smiley Talk instant message program that enables users to have a conversation online without having to type. Smiley Talk has pre-conversation options to click and you can go back and forth in conversation with this system and have a regular conversation with your online friend.

For a limited time, Special Friends Online is offering this service free of charge. So, if you have Down syndrome, mosaic Down syndrome or any type of learning disability, or if you are a parent or carer of someone with Special Needs, I highly recommend that you check them out.

You will have fun and meet lots of Special Friends Online!

After publishing this story, I received this message from Claire at Special Friends Online and wanted to share it with you all. Here is what Claire had to say… 

Hi there

My name is Claire and I am the operations manager of www.specialfriendsonline.com. The reason for me writing is to thank you for the write up that you have done about special friends. I am currently in the process of spreading the word so your help is greatly appreciated.One thing we has become apparent through special friends is that many parents would like to create awareness about their child’s life and/or learning disability. There are several ways in which we can assist if this is of interest to you.

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There is an old saying that says “Babies don’t come with instruction manuals”. These seems more the case when you have a child with Down syndrome or any other special need. Parents are constantly trying to come up with ways to help their child and discover what works and what doesn’t.

But what if there was an instruction manual? Would you stand in line to be the first one to get it?

I think most of us would. If it would help our children and save us some headaches and sleepless nights, I think every one of us would be standing in line for this book!

Up until now, there hasn’t been such a thing. But, one is in the works and the best part is, YOU can be a part of it!

The Special Needs Handbook will be a down-loadable book (and maybe later a hard copy edition) of tried and true tips from parents of children with special needs.

This is in the early stages and without a doubt, a large project. The outline for the book is the following:

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More than likely you have all heard the news this week of the German doctor who was refused residency in Australia because his son has Down syndrome.

If not, you can read one of those reports here.

However, this is nothing new to immigrant families throughout the world. As president of International Mosaic Down Syndrome Association, I get many requests for assistance in residency to other countries when the family has a child with Down syndrome or mosaic Down syndrome. Unfortunately, we have never succeeded in helping any of these families.

Each government has their own rules. And each one of them has specifics on taking in new residents who have special needs. The reason they do not accept these individuals is because they see them as a liability. They think about all the “What ifs”

What if the person gets sick and needs medical care?

What if the person requires developmental therapy?

What if the person requires special education?

What if the person requires long term care as an adult?

In most countries, these interventions are at the cost of the country funds and they do not want to pay for someone that wasn’t automatically in their country.

It is a sad situation, without a doubt. The families just want a better life for their child. And, some countries are better at that than others.

I guess the final resolution is to work in your own country to make others understand that these individuals can contribute to society. They can learn. They can work. They can live lives just like everyone else!

It is, without a doubt, a difficult task. And, no ONE individual can do it alone. However, if families can come together and begin advocating LOUDLY for their children, then things will begin to change!

In America we have come a long way from the 1970’s of children with Down syndrome and other special needs just finally being accepted into public schools. This was accomplished by a few families who came together and demanded their child’s rights.

Others can do the same. It won’t happen over night, but it will happen!

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