MOSAIC MOMENTS

Dr. George T. Capone is a leading researcher at Kennedy Krieger Institute to better understand those with Down syndrome and Neurobehavioral disorders such as Autism.

Children with Down syndrome have a higher risk to have Autism than the general population. Considering that right now in America, Autism is quite high, because the population of those with Down syndrome is much smaller than the general population, the odds of having Autism increases. 

My son with mosaic Down syndrome also has Asperger syndrome, which is on the Autism spectrum. So, I know first hand what this world of duel-diagnosis is. 

Dr. Capone and his team of researchers are exploring the link between children with both Down syndrome and autistic spectrum disorder ages 3 to 4.5 years. Another, drawing from a population of individuals ages 15 to 35 years of age, seeks to better understand the relationship between Down syndrome and neuropsychiatric disorders (i.e., depression, obsessive-compulsive tendencies, movement disorder and cognitive decline). Another study involves males ages 5 to 10 years of age, for genetic difference in children with mental retardation. Dr. Capone is also studying children with Down syndrome and Congenital Heart Disease (CHD). 

Dr. Capone will explain more about his research on Down syndrome and all the Neurobehavioral disorders associated with it and help parents and professionals better understand what to do to help their child with these disorders. 

You can click here to read all of Dr. Capone’s research studies.We are still working out the details of the research at the conference, but I am pretty sure that Dr. Capone will be conducting research at the conference. So, be sure to indicate if you are interested in participating in research on your registration form, so we can set you up appointments prior to the event.

I have never had the opportunity to meet Dr. Capone, so I really look forward to hearing him speak at the conference. The more that I go through each of these speakers the more I am thinking that we really are going to have to have these workshops recorded! I want to be able to hear each of them and I know that you do too! So, we will have to look into those options and talk with a few friends who might can help out in that area. 

In this past week, we have had several more families sign up to attend our conference in July in Cincinnati. If you haven’t signed up yet and you are still waiting to hear if a certain person is coming or if you still are not sure, please ask me the questions that are on your mind! I will answer anything you want to know! Remember that you can go to our site by clicking here for more information on the conference and to register and reserve your hotel!

It isn’t often that I don’t post on my blog over the weekend. But this past weekend was quite busy as I was getting my husband ready for his new job and knowing that we will not see each other for another month, we tried to spend some time together. So, now everything is back to normal-whatever “normal” is… sometimes it is hard to determine my “normal” but I try!

I want to continue this series of explaining mosaic Down syndrome. And as I do this, I want to talk about something that has been on the forefront of my mind.

Throughout the years I have encountered many individuals who have actually gotten angry because I said my son had mosaic Down syndrome. Up until just recently when this was explained to me, I was in a state of confusion over it. I have just about heard it all over the years and even have received “hate mail” (years ago) from angry people because we began International Mosaic Down Syndrome Association to support families whose children have mosaic Down syndrome.

It seems that the general consensus is that parents of children with Down syndrome think that parents of children with mosaic Down syndrome think they are better off than them.

Try to stay with me if you got confused there! I will try to draw it out…. I am a visual learner and I know that many of you are too!

Here are the parents of children with Down syndrome: 

Here are the parents of children with mosaic Down syndrome:

These Parents Think These Parents Think that “they” are better off than “them”

The reason these parents think that is because these parents say that their child has mosaic Down syndrome instead of just saying the child has Down syndrome.

So, the question came up, “Why do I say that my son has mosaic Down syndrome?”

The answer is really quite simple.

When Tim was diagnosed, the doctor said, “Your son has mosaic Down syndrome.”

This was his diagnosis. It never occurred to me to say any different. I never thought, “Well, aren’t I lucky!” And, when I went to the library all those years ago and looked through the available books on Down syndrome, not one of these books “fit” for what my son was dealing with. Not one of them described his specific problems. Everything that I read just made me scratch my head more and wonder what all this meant.

This isn’t to say that he was not experiencing delays in development. Nor am I saying that he was “better off” compared to those with Down syndrome. In fact, there were many times when I wished he had Trisomy 21 Down syndrome! At least then, I could read a book about his diagnosis!

And, most parents of children with mosaic Down syndrome feel the same way that I do. And, they say their child has mosaic Down syndrome because that is what their child has. In fact, I know many who say their child has Down syndrome just so they WILL be accepted into the Down syndrome community!

To me, that is pretty sad. We are all in the same boat here. Some of us may be at the front of the boat, some may be in the back. And many are sitting in the middle rowing their hearts out! But no matter what…. we are all in the same boat!

My son also has Asperger syndrome. This is a form of Autism. Why don’t I say he has Autism? Because he has Asperger syndrome. The symptoms are specific to the disorder. It is kind of like describing the color green. There are many shades of green. There is dark green, light green, olive green,  mint green,and regular green. These are all shades of green, but different in their own way. If I had a sweater and told you it was green you would wonder what shade of green.

So, please remember that when a parent says that their child has mosaic Down syndrome, they are not saying “I am better than you”, they are simply stating the “shade of green”.And sometimes, It’s Not Easy Being Green!

With the US government about to make a change in office management, everyone is scrambling to get in line for their voice to be heard. As an advocacy leader for mosaic Down syndrome and Down syndrome and a parent and grandparent of children with special needs, I can see the need for change in the way health care is handled for those with disabilities and special medical needs.

Medicaid waivers are meant to help individuals with disabilities and those with special medical needs, however the waiting lists for these programs is astronomical. Families and individuals find themselves waiting for much needed care and most waiting lists are between 2-10 years before the care is available to them. (waiting time varies in each area)

If you are a parent, an advocate, a self-advocate, a family member, a friend, a neighbor, or even if you don’t know anyone with a disability or special medical need, YOU CAN MAKE A DIFFERENCE!

You can go to Change.org and help bring this important topic to the top of the list to be addressed as part of the new economic stimulus package when Obama become president of the US.

The Medicaid Waiver topic must make it in the top 10 of issues through Change.org in order to make it to the White House. Currently, it is in 20th place! Only 1400 votes are needed to make it in the top 10.

Please click here to make your vote! It takes less than a minute to vote and will make a difference in hundreds of thousands of peoples lives throughout America!

VOTING ENDS ON JANUARY 15! DO NOT WAIT TO MAKE YOUR VOTE!

Please pass this information on and encourage all your friends and family to vote for this important change!

Each day, I have many different visitors visit my blog for various reasons. Either you are a regular viewer (which I appreciate more than I can possibly express), or you have stumbled upon my blog in the midst of searching for information (possibly on Down syndrome or mosaic Down syndrome) with your search engine. Gone are the days when we waited for the Encyclopedia salesman to arrive with our new volumes of information for the year! Now, with the World Wide Web, information on anything you can imagine is at your finger tips! It is a wonderful thing for sure!  

Each day, I am able to look at statistics on how people have come upon my site and see what words they put in their search engines that brought them to my site. Some are quite interesting, some are downright strange and I wonder how they were directed to my blog with their search, and then others makes me say, “Wait! Come Back! Ask Questions!” because I would hate for these people who are looking for information to not be fully fed with the information they needed.

So, for the next several days I am going to answer these questions that have been addressed several times that visitors have asked through their search engines and because of their search, they were directed to my blog. These are the most frequently asked questions about Down syndrome, mosaic Down syndrome, disabilities, prenatal diagnosis, and programs for those with Down syndrome or other special needs.

In the midst of it all, if you have any questions PLEASE ASK! If you don’t ask you won’t know! You can leave a comment or send me an email if you would like to talk privately. There was a time, not too many years ago, that I had no information on Down syndrome or mosaic Down syndrome. My son was already a teenager and I was clueless! Then, I started asking questions-lots of questions! And before I knew it, I was the president of International Mosaic Down Syndrome Association and considered the most knowledgeable person in the world on mosaic Down syndrome! So, ask questions! It is the only way you will know the answers.

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This time next week we will be over-stuffed from too much fried turkey and exhausted from too much family!

Since Christmas is almost here…. I finally began shopping today some! I was thinking about what to talk about today, and in my other blog I have been doing Christmas show trivia. If you are interested in having some fun and remembering some shows from your past and learning some interesting facts, you can click here for that blog.

So, in the Christmas theme, I wanted to share with you my MOST memorable Christmas moment with Tim. This will be a day that I will NEVER forget!

Tim was 3 yrs old and Arron was 7. We had a one room cabin in the Hill Country in Texas where we spent our winter weekends to go deer hunting. My mom had that “great” idea that we should all spend Christmas in this one room cabin. Now, when I say “one-room-cabin” that is really what I mean! This was a small square with two beds and a stove. We had just enough room for pallets on the floor for the kids. (keep in mind that I did not mention a bathroom in this description! but that is a whole other story!)

So… we are going to have Christmas at our deer camp. We got a small Christmas tree about 2 feet tall and I bought construction paper for the kids to cut out and make paper chains and tiny cards for us to hang on the Christmas tree-each saying something that the children wanted Santa to bring. We set the tree outside because there was no room in the cabin for extra things. The Polar Express had just come out in a book and Arron was so excited to tell me all about the story that he heard at school. So, we made sure that Santa would bring sleigh bells for the children to have.

Throughout the day I told Tim that when he went to sleep, Santa would come and bring him toys. And when he woke up, he could play with all the toys Santa brought him! I wasn’t sure if he really understood because after all, he was only 3, but I wanted to get him excited for the event!

THIS WAS MY FIRST MISTAKE!

After getting the kids to sleep, everyone else was ready for bed too. I told them to go ahead, because I needed to still help Santa set up the toys (at our house, Santa leaves out all the toys already set up and then just a few of them are wrapped). So, everyone went inside our tiny cabin and I got to work setting the toys up outside because there wasn’t enough room in our one-room-cabin to do this!

The temperature was about 20 degrees and the only light I had was from our camp fire and a single light bulb that served as a porch light. I didn’t think this would be too much of a problem. I figured I could put all the toys out and quickly get under the covers and get warm!

However, Arron had asked for micro-machine cities for Christmas! Each tiny city said “assembly required”.

Surely that wont be too hard, I thought.

THIS WAS MY SECOND MISTAKE!

Each mirco-machine city required DETAILED stickers to be attached. And, they were the kind of stickers that once they stuck…. they never came off! So, I had to get them completely aligned the first time or everything was messed up!

I had TWENTY micro-machine cities! Each tiny city had at least 5 stickers!

This was in addition to all the other toys that had to be set up and a tricycle that had to be assembled!

I was determined! By golly, everything would be set up before I went to bed! It had to be! There really wasn’t another choice.

So, sitting by the fire…. freezing and very little light…. I applied stickers and assembled bikes and put all the toys out for Christmas.

Finally at 4am I was finished! My back was breaking, my head was throbbing and I could no longer feel my fingers, but everything was set the way it should be.

I quietly tip-toed into the cabin where everyone was peacefully sleeping. I stepped over the kids and made my way to bed. I crawled under the covers, finally feeling a bit of warmth, and the moment my head hit the pillow I sunk down ready for some rest before the sun came up and Christmas began.

As I settled in and got comfortable and finally closed my eyes…………

Tim jumped from his pallet and said loudly, “SANTA! TOYS! SANTA! TOYS!”

I tried to convince him that Santa had not come yet and he really needed to go back to sleep, but the more I whispered, the louder he got!

SANTA! TOYS! SANTA! TOYS! it was like it became a chant for him and even 20 years later I can hear him excitedly exclaiming this!

Not realizing that I had just laid down, my mom and dad woke up and said, “Alright! Lets go see what Santa brought!”

I pulled the pillow over my head! I was exhausted!

But then Arron was up and he wanted to see too, even if it was FOUR IN THE MORNING!

So, I got out of bed and put my coat back on and we all walked outside in the freezing weather to see what Santa brought. Tim was ecstatic and rushed from toy to toy! He had a toy phone and he picked it up and said in the receiver, “SANTA! TOYS!” I guess the caller needed to know…..

Arron was thrilled with his micro-machine cities and played with them longer than any other toy he ever had.

My mom thought it would be great to take a picture of me that morning. I was sitting on the floor of the cabin showing Tim a toy and had a Christmas bow stuck to my head. (I don’t even think I knew the bow was there!) I look like death warmed over and basically felt like it too.

When Garrett came along, six years later and got old enough to understand Santa, I made sure NO ONE hyped him up for the occasion! At three years old, I think it is better to explain it when they wake up to find them! At least then, you might get some sleep!

Most people who read this blog are parents of children with Down syndrome or mosaic Down syndrome. Along with that, are other family members who have a loved one with Down syndrome or mosaic Down syndrome. Then, every now and then, we get a few who have family members with Autism or Asperger syndrome, or have it themselves. And then, our great family from Today.com  come in and enjoy a visit which I appreciate very much.

The other category of viewers are searching for information because they have either just gotten a prenatal diagnosis and are told when they are pregnant that their baby is going to have Down syndrome or mosaic Down syndrome, or they have a newborn baby with Down syndrome or a child with mosaic Down syndrome who was recently diagnosed. 

The final category of viewers are the curious by-standers who stumble here by “mistake” (I don’t believe in “mistakes”)

The biggest question that I hear from the people who do not have a child with a disability is “How can you do that? I could never deal with having a child with a disability.”

So, today’s message is for those curious bystanders and for those parents who are expecting a child with Down syndrome or mosaic Down syndrome or any form of disability. And, for the parents who have just received this diagnosis. And for those who think that for some reason we parents of children with any disability are somehow “Saints” because we have chosen to raise our children instead of abortion or institutions.

Never under estimate what you can do!

And, never, ever, measure a disability.

No matter what, we as parents certainly did not ask (well most of us didn’t…there are those few whom I do treasure who specifically did ask) for our children to have a disability. But it is what it is!

You can’t turn back. You can’t run away. and You can’t forget about this very special child that God has entrusted in your care.

And, you can not measure a disability!

Every single person on this earth has some form of disability.

I have at least two!

First I have dyscalculia. This is like dyslexia, but instead of letters, I confuse numbers. So, if you tell me 75 I will write 57… yes… writing that was difficult. I have developed a real fear of numbers and have struggled all of my life! I can’t balance a check book. I have trouble paying bills because I don’t know how much money I have. And when you just talk about numbers with me I have major anxiety!

“Wow!” you say… “That is horrible! There is no way I could deal with that! That has got to be the worse thing to happen to a person!”

I deal with it and have learned how to adjust to make things work. I do wish that I didn’t have it, because I know that others can write numbers and add and multiply without a problem! But since I do have it, my husband and my kids help me and it is what it is!

Another disability I have is degenerative scoliosis. What this means is my spine is curving more than a scenic route in Tennessee! It starts at the base of my head and continues to curve all the way down to the end. It is painful….extremely at times. Once I spent a whole year in bed because walking was just too much for me. And when I did have to walk, I could not without a cane. Filling the coffee pot for my husband’s morning coffee was excruciating because 8 cups of water was just to heavy for me to lift. On days where my spine does a roller-coaster spin, my organs push up against my ribs and I have horrible indigestion and have a real hard time breathing. Some days are good…some days are bad…. And I know that eventually I will be completely crippled by it.

“Wow!” you say “I can’t imagine living with all that pain! Having your spine curve like that has got to be the worse thing to happen to a person!”

I have to agree that it does indeed suck! I can’t do all the things I would like to do, but I have learned my limits and I am not sitting around moping about it. It is what it is! And there is not anything that I can do to change it!

Then, my son has mosaic Down syndrome, ADHD, and Asperger syndrome. All together! Over the years he has been extremely hyper, he’s been immature, he struggled some in math. (and I couldn’t help him with it!) He has extra sensory issues and auditory processing disorder. He takes daily medication for his ADHD, Allergies and Thyroid. As a child, he was deaf because of fluid back up in his ears and he had severe asthma.

“Wow!” you say “There is no way I could deal with all that! Having a child with a developmental disability has got to be the worst thing to happen to a person!”

I probably would say the same if I didn’t know better either. But because I am in these shoes I have a different perspective on life and know that there really isn’t anything that I can’t deal with. And, I love my son! And… He loves me too! It isn’t horrible… it is just different. But I have 5 sons and not one of them were anywhere near the same as the other! There are also some good sides to it all. And, having Tim is not much different than having Arron, Dustin, Stevan or Garrett! If you want to feel sorry for me…feel sorry that I never had a girl!

Then, there is my beautiful grandson, Aidan. Aidan has VATER syndrome. VATER is an acronym for many vital organs that are affected. When he was born he was missing a part of his esophagus, had a tube connecting his trachea and esophagus, had a collapsed trachea, his heart was backwards and he had several holes in his heart, he had kidney reflux and later a bone grew over his soft spot and for his first birthday he had to have his skull scraped and restructured. By his third birthday, I lost count of how many surgeries has has went through. When he was seven months old he went into cardiac arrest for the third time. This time-it was my turn to bring him back to life. He spent his first few years in the hospital more than at home and he now has a pacemaker that is working 90% of the time. Aidan needs a new heart. (these are just a few of his health problems)

“Wow!” you say “There is no way that I could have a child that sick! I just couldn’t do it! That has got to be the worst thing to happen to a person!”

It’s funny isn’t it…. First, you thought that you couldn’t deal with having dyscalculia and not being able to balance your checkbook. Then, you thought about your spine curving and all the pain and restrictions it involved. Next, you thought about having a child with a developmental disability like mosaic Down syndrome, ADHD, or Asperger syndrome and that this would be absolutely impossible to deal with. And then, you read about my grandson Aidan and all his health issues and decided that THAT was the worst thing to happen to a person.

You can not measure a disability.

Everyone has something. Each one has its downfalls and each has its blessings. Nobody is perfect! Not one person! Yes, you may struggle, but no matter what your child has or doesn’t have, you will still have struggles! My son with mosaic Down syndrome was my easiest teenager!

Yes, there will be times you want to throw in the towel and cry your eyes out. And, by the way… it IS ok to cry!

But don’t cry forever because if your eyes are always wet with tears, you wont be able to witness the miracle of a smile, or a kiss, or a simple “I love you, mommy” from your child.

That is what I think would be the WORST thing to happen to a person!

When Tim was about 9 years old, he was getting old enough for me to trust to play outside on his own….. I thought…..

I was pregnant with Garrett at the time and this particular evening I was cooking dinner, or at least I was trying to…. hamburger meat tended to make me very ill… just the site of it… so, I would stir the meat with my eyes closed and I my breath held (so I couldn’t smell it) and Tim was playing in the yard (so I thought).

While I was cooking, all of the sudden Tim came running in the house and had the most guilty look on his face that he has ever had!

He ran through the door, past the kitchen and down the hall to his bedroom before I could even ask anything! I holler down the hallway to him asking what is wrong, and he answers “Nothing”

I start my way down the hall (waddling mind you because I am pregnant after all) to confront the problem, whatever it may be, when all of the sudden there is a knock at the door.

Tim peered out of his bedroom door looking petrified. I asked him what he did wrong and he answered in a very small quiet voice “Nothing”

Knowing way better at this point, I went to answer the door. It was my neighbor and by the look on her face, Tim’s “Nothing” was definitely “Something”

She explained to me that Tim had gone from house to house and switched off every single person’s main breaker to turn off their electricity! (All this time, I thought he was playing in the yard!)

She said that someone had eventually caught him in the act and apparently that was when he ran through the house.

I thanked her, though I was mortified!

I turned off the stove (the smell of the meat was killing me anyway) and for the next hour, Tim and I walked from house to house. I stood out on the sidewalk to watch him and made him knock on each door an apologize to each person for turning off their electricity.

He never did have an explanation as to why he did this! I don’t think he really knew why he was compelled to put over 20 houses in the dark. Today he laughs about it…. I still am not laughing too hard…but maybe one day I will get passed the embarrassment of it all and when he has his own family I will get my wish that I have bestowed upon him ….

I told him I wished he had 10 kids just like him!

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When Tim was small, he took everything literally. He still does now, just not so much to the extreme. Maybe this is a “mosaic Down syndrome” thing. Maybe it is an “Asperger syndrome” thing. And, maybe it is just a “Tim” thing. But what ever it is caused by, it is what it is! So, we always tried to be very careful how we worded things when talking with Tim and usually did pretty well. However, sometimes when you are sleepy and want to be left alone, it is easy to forget these rules. This is what happened one early morning when Arron was about 10 years old and Tim was six.

It was a very early Saturday morning (you will find that most of these stories happen early in the morning when most people are trying to sleep!) and we were all in bed asleep. Tim, however was awake (of course) and instead of waking me, he choose to wake Arron instead.

He continually tapped Arron on the shoulder, you know how little kids do, and Arron continually covered his head with the pillow hoping that Tim would just go away. If Tim is anything, he is persistent!

Finally, Arron said, “Leave me alone! I am dead!”

Well…. when you tell a little kid, who takes everything literally, that you are dead, then that particular little kid will take action!

Tim left Arron’s room, much to his relief, and Arron figured he had gone to wake me up. However, after a few minutes had passed, Tim returned to Arron’s room to tell him that someone wanted him on the phone.

Sleepily, Arron got up not imagining who could possibly want him on the phone. Upon answering, the caller explained that they were a 911 operator! They asked if everything was OK and said that Tim had called to tell them that his brother was dead!

After a lot of talking, Arron was able to convince the operator that he was indeed alive, however HIS brother may be dead when it was all over with!

When Arron hung up he woke me to warn me that the police may be coming. 

I was shocked and thought back about what it would have been like to wake up to a million police cars and ambulances screeching into my yard! 

Thankfully, Arron was able to convince them well, because no one showed up at the house.  

I would like to say this is the last time that Tim called 911 unnecessarily, but with Tim the story always continues! I will have to save those adventures for another time!

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On Wednesday, December 17  The Down Syndrome Association of Central Texas in Austin will begin taking steps to make a huge difference in America regarding those with Intellectual Disabilities.

Texas State Senator Zaffirini is writing legislation to replace the outdated terminology concerning those with developmental delays. This new legislation will change the negative terminology that is insulting and degrading to those with intellectual disabilities to more acceptable up-to-date terms that gives those with intellectual disabilities the respect and dignity they deserve.

Senator Zaffirini is drafting legislation for the 2009 session that would establish the definition of “intellectual disability” within the Texas Code. What does this mean? If this legislation passes, the the term “mental retardation” will be a thing of the past! No longer will this term or the “R” word be an acceptable term and with it being passed in legislation that makes it much more official and hopefully more acceptable to everyone.

This is such an exciting time for everyone! These are very necessary steps and will make a huge difference in those with intellectual disabilities!