MOSAIC MOMENTS

I want to wish everyone a Happy and Safe New Year! I hope that 2009 is the best year you have ever had!

I want to continue answering questions from the visitors who happen upon my blog looking for answers about Down syndrome and mosaic Down syndrome.

This month, there have been many questions and it seems that the most asked question is how a person is diagnosed with mosaic Down syndrome. Back in June, I had addressed this issue in a 4 part series because the answer isn’t as simple as some wish it was. You can read those parts here , here , here , and here .

Another question that comes up often is if Sujeet Desai or Chris Burke has mosaic Down syndrome. I am close friends with Sujeet’s mom and know that he does not have mosaic Down syndrome. He has Trisomy 21 Down syndrome. I think that Sujeet’s life is a great testimony to how individuals with Down syndrome can succeed. If you have no idea about who Sujeet is, then you are truly missing out! You can visit his website by clicking here . Chris Burke played “Corky” on Life Goes On back in the 80’s. I have met Chris and have spoken with him for quite a while during our visit. In my opinion, Chris Burke exhibits the signs of Trisomy 21 Down syndrome and not mosaic Down syndrome. However, I do not know this for sure. I know that his manager has said that he has Trisomy 21 Down syndrome. Chris is another awesome example of what a person with Down syndrome can accomplish when given the opportunities to succeed!

Sujeet Desai play one of his 6 instruments

Chris Burke at one of his speaking engagements

Some other questions that have come up this month that I thought were kind of funny….

I had two searches asking how to get a popcorn kernel out of the ear canal and one asking what to do if a metal marble is still in the stomach. If you have been reading, you read my “Mosaic Moments” with Tim when he was younger and how he got the popcorn kernel in his ear and the time he swallowed the metal marble.

Now of course I am not laughing at these people’s experiences with this, because I have been there and I know how that feels! I am laughing because I can’t believe I am not the only one trying to get popcorn kernels and metal marbles out of my child’s body! Hopefully, these parents were able to get their child to a doctor and they have resolved their problems by now.

Then, I got several searches for Special Friends Online ! I had written about this great website twice this year in my blog. You can see those posts here and here.

I have been having a lot of fun on this site in the past months. Everyone is very friendly and the whole idea of this social networking site for those with disabilities is amazing! If you haven’t checked them out, I highly recommend that you do!

The last two questions that I got this month that really stood out were:
I was suppose to give birth yesterday what does this mean ?

and

How many people have low i.q.’s and still become doctors?

As for the first question…. a due date does not mean that you have a set appointment to have your baby. Babies do not have calendars or PDA’s, so they can not synchronize when they are supposed to arrive. Most babies come 2 weeks before or 2 weeks after the due date. And, that is only if the due date is close to accurate! A due date is basically a lottery number drawn from a hat guessing the approximate time your baby might decide to be born! Hopefully, this parent has had their baby by now and all is well!

The final question made me laugh the most! I am friends with many fine, intelligent doctors in various fields. I respect them and appreciate all the work that they do!

There are, however, many doctors that I have come in contact with that I wonder how they possibly could have passed their exams and made it to care for individuals whose lives depend upon their expertise!

One instance that stands out in my mind was actually a surgeon who was removing a tumor from my foot. This was an outpatient surgery and I chose to have my foot deadened instead of being put to sleep because I don’t do well with anesthesia. Because I was awake, I told the doctor to tell me everything he was going to do before he did it, so I wouldn’t jerk or jump.

He said, “OK, this is the only thing you might feel a little.” and he proceeded to cut my foot open!

I hollered. LOUD!

He said to his assistant, “Dude, I thought you deadened her foot!”

The assistant said, “No Dude! I thought you did!”

In unison they said to me, “Whoa! Dude! That’s gotta hurt!”

I was thinking that these guys must have done a little too much ether before the surgery!  With my foot cut open, it was too late to deaden it! I went through the entire tumor removal awake, alert and feeling every moment of it!

So….. I am not sure how many people become doctors and have low I.Q.’s. But I am sure that I can name at least two!

I hope everyone has a Happy New Year and please continue visiting my blog in 2009!

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Today I received a comment on my blog from a new Grandma. Because I am answering questions and know that many will come on my site who have a new baby with Down syndrome or mosaic Down syndrome, I thought I would go ahead and address Robyn’s concerns here in my posting, so others can benefit as well.

This is what Robyn told us…..

I’m grandmother to precious new baby boy Japree born on Dec. 6. He was diagnosed with DS through a karyotype test. He is doing wonderful, no heart problems, no other heath problems, other than small because he’s a preemie. The info. on simean crease is interesting. Not sure how to understand it as I’m new to this. He has both creases on both hands. No simean creases at all and does not have features of baby with down syndrome, although I know he may be too young to tell. Doctors were suspicious because he was floppy and had sandal toe. We are still trying to learn. I have to say after dealing with doctors through this whole thing, they are the rudest people I’ve ever known. Your website is very informative and I plan to read more.

First of all, I want to congratulate you, Robyn, on your new grandson! What a beautiful name his parents have chosen for him!

It could be too early to tell if he has any strong physical characteristics of Down syndrome.  A few months from now, if he doesn’t have those features, then you can revisit the idea to see if he has mosaic Down syndrome instead of Trisomy 21 Down syndrome.

Unfortunately, some doctors can be rude. However, we can not fault them for their rudeness, but only educate them with our intelligence. So, next year, when you are celebrating Japree’s first birthday, send a picture and a letter to the doctors who are caring for him now and tell them about all the things Japree is doing! Tell them how wonderful he is and how wrong they were in their assumptions.  In one year, you will be far more educated on Down syndrome than the majority of the doctors at that hospital and will, like all grandparents, exercise your bragging rights!

I would like to recommend some website for new parents and grandparents of babies with Down syndrome and mosaic Down syndrome.

The National Down Syndrome Congress has a great page with lots of information on Down syndrome.

For  information on mosaic Down syndrome, you can visit International Mosaic Down Syndrome Association for our information packet.

Yvonne Pierre has just started a new format for her site. This is a great messaging system that will get enable everyone to talk through email and other outlets. Here site is HYHonline.com

I would also recommend that you join an online support group. There are hundreds to choose from. The most informative on Down syndrome is the Down Syndrome Info Exchange.

International Mosaic Down Syndrome Association’s main support group can be found by clicking here.

Both of these groups are email groups that allow you to email with families throughout the world who have children of all ages with Down syndrome or mosaic Down syndrome. Because these are 2 of the most active groups on the web, I suggest that when setting up your email account with them, you choose “Daily Digest” if you don’t want too many emails at once in your inbox. This will allow you to receive all the emails in one message and respond to those you wish to.

Finally, I recommend that you find a local Down syndrome support group in your area. You can find yours simply by typing “Down syndrome” and your city and state in your search engine. Most areas have a Down syndrome Association but if you have trouble finding one, just leave me a comment and I will be happy to help.

As a new parent or a new grandparent, all the information you receive can be overwhelming. Please remember that your baby is a baby first! Just like every other baby, he needs love and comfort and cuddling. He doesn’t know that he has extra chromosomes floating around in his body! And you wouldn’t have either if someone hadn’t told you so. None of your dreams or wishes for this new baby have changed.  Enjoy him thoroughly. Spoil him rotten! (it is your right as a grandparent) And love him like you would any new baby!

And, don’t worry about tomorrow, because today has enough trouble of its own!

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Atif Farid has a great Health Blog that you can visit by clicking here. The question Atif had about Simian creases was a very good one. Atif asked, “How many children with Down syndrome have the Simian crease? Is this just incidential or is there a reason for it?”

A Simian Crease, also known as a single palmer crease occurs in 1 in 30 individuals without a chromosome anomoly. For people with Trisomy 21 Down syndrome, this is a physical part of the syndrome and is seen in both hands. However, for those with mosaic Down syndrome, it can often be seen in one hand, both hands or neither hand. It just depends on where the cells are located in the body.

Having said this, I am sure that I will have at least one parent say that their child with Trisomy 21 has this crease in only one hand or neither hands. If this is the case, then more than likely not enough cells were tested during the karyotype and this child actually has mosaic Down syndrome. This would be a good indicator for those parents who are not sure which form of Down syndrome their child has. (however, this is not absolute, since some individuals with MDS have the crease in both hands)

The simian crease is also found in other genetic conditions such as Trisomy 18, Trisomy 13, Aarskog syndrome, Fetal alcohol syndrome, Rubella syndrome, Turner syndrome, Klinefelter syndrome, Cohen syndrome, and Cri du Chat syndrome.

There are no known difficulties caused by this crease. Personally, I have a simian crease in both hands. This does not mean that I have a genetic condition (I have participated in extensive research, so I know for a fact how many chromosomes have an extra copy of the 21st) I am just one of the one in 30 people who happen to have the crease. Definitely interesting considering I have a son with MDS, but since that is not hereditary, there is no reason to believe there is a cooralation.

Thanks for the question  Atif Farid! It was a great one to ask and I hope this helps you better understand Simian Creases and Down syndrome.

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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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For those of you who celebrate Christmas, I hope you all had a very happy one filled with family and fun!

We certainly did, and now we are recuperating from the last two days.

This was my first year to not do Santa Claus. The past few years, even though Garrett no longer believes, my grandsons had Santa at my house, so we still had to do it all.

This year, Santa came for Aidan and Spot at my mom’s house, then everyone came to my house for the day.

Christmas Eve was a LONG day of baking! By the end of the day, my wonderful hubby, Glenn made spaghetti while I finished up baking cookies. As he was helping me clean up, he went to put the spaghetti back into the cupboard and the entire package spilled out all over the floor.

I was really proud of Glenn. Instead of being mad, he hollered out to the boys to come and they played “Pick-up Sticks” with the spaghetti until it was all picked up!

After finishing our wrapping, I fell into bed and every muscle in my body was hurting from all the baking I had done.

This was the first year, I could have slept in a bit. I had no young children to wake me early. I could sleep at least till 8! However, by 6am my muscles in my back (and the rest of my body) were screaming. So, I got up and began our special Christmas breakfast. (this recipe is in IMDSA’s Recipes for Research book)

By 8am everyone was awake and ready to go.

The boys opened their presents and Garrett was very happy to get the one thing he was really asking for….

And then, of course, they all had to try it out….

Glenn singing (on his knees) Garrett at the drums and Tim at Guitar.

And then, my parents came over and so did my son Arron with two of his sons, Aidan and Spot. Arron, however had had a long night with Aidan. It was reminiscent of my story the other day about Tim waking me up at 4am for Santa, only Aidan started his banter at 2 am. So, This was Arron for Christmas…

We just kept piling presents on top of him while he slept.

Then Tim got his big present from my parents (Mimi and Pawpaw)

He had no idea what to expect

When he got the paper off, he realized he just got a brand new computer (his had broke down a few months ago)

He was very happy! (he is hugging it lol)

He is thanking his Mimi

He gets up to hug his Mimi here. The picture is a bit blurry, but that is ok, because everyone’s eyes were blurry at that moment any way.

Then Garrett got an iPod….

They both got mazes from Arron that had money in them

You had to get the ball through the maze to get the money. Arron couldn’t tell them this….

but they figured it out….

Spot and Aidan had no idea that their dad was sleeping a few feet away…. They were busy opening presents!

Spot and his tiny skate board

Then Garrett opened a Texas Longhorn Trunk that his Mimi and Pawpaw got him and realized there were more presents inside the trunk!

Of course…. It was more Texas Longhorn stuff…. He is a big fan even though we live in Aggie country

When my sister Lisa, and her family arrived we opened more presents.

(the foot next to here is Arron’s…. he’s still sleeping)

She is a big jokester and she knows that I have this wallpaper in my bedroom that was here when we first bought the house and I just hate the wallpaper. It is a wide boarder that goes around the room and has a photograph of baby wolves. Everyone who comes by thinks I must just love wolves….. I don’t…. We just never took it down….

So… she insists that Glenn and I open this one present together.

It is a plaque of a wolf for me to “accessorize” my bedroom

I am happy to say that Arron finally woke up….

(l-r Aidan,Arron, Spot)

We all had a wonderful time! The house is clean, the tree and decorations are down and life is back to normal……almost

Yesterday, I learned a very important lesson and I am so glad that I did!

About seven years ago, I had taken Tim and Garrett to the park to play. We were the only ones there and they were happily swinging on the swings, when all of the sudden this woman, who had been painting some of the equipment at the park, came over and sat down beside me.

She asked me how old Tim was. Not Garrett, the much smaller one who usually gets the public comments that most small children get. I told her he was 15 and thought it strange for her to ask about Tim instead of Garrett. She continued with small talk, but each question was about Tim and I was beginning to become annoyed. It bothered me that anyone would notice his differences. Especially when it is rare for most to even recognize that he has mosaic Down syndrome. It bothered me because I wanted others to see Tim as just Tim. Not Tim, the kid with something different.

The more she asked questions, the vaguer my answers became. She was never rude. In fact, she was very friendly. It was me who had the problem.

Our conversation ended when I abruptly took my kids home. I made some excuse of having an appointment of something and off we went.

To this day, this encounter has bothered me. I would think back about the woman in the park and think about how she was seeing my son. I imagined that she saw him as this completely different person who would never accomplish anything. I assumed that she didn’t have a clue what it was like to have a child with special needs.

Yesterday, I learned that I should never assume anything.

I ran into this woman again yesterday and she asked me about Tim (your son with Down syndrome). Automatically, I bristled in defense. I said he was fine and explained that he had mosaic Down syndrome. She said that someone else in town had told her that and she wondered what it was. So, I explained a little further.

Then, she said that she had an adult daughter with Down syndrome a few years older than Tim.

I was shocked. I had no idea and all these years I had assumed that this woman in the park was just being nosy or trying to make “special” comments about my “special” son.

Instead, she was just trying to connect with me! She and I both had a bond that only mothers of children with a special need can have. And, for the past seven years I had missed an opportunity that was right under my nose!

So, I learned a very valuable lesson-Never assume anything unless you have all the facts!

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Most of you already know who Yvonne Pierre is, but for those who don’t, Yvonne is an amazing woman who is always looking for new ways to help families with children with Down syndrome. She has a young son of her own who has Down syndrome and since his birth she has been working hard for all of the families throughout the world to be better informed about Ds.

I want to introduce you to a good friend of mine. This is Casey and his son, Ronin Allen. Casey and I have been emailing for the past several months and I always look forward to getting his emails. He has a great sense of humor and at the same time has a heart as huge as the Atlantic Ocean! He is a dedicated father and loves his little boy with an emotion that is rarely expressed by most young fathers. Casey lives on the West Coast in the US and is currently looking for the perfect job. (Anyone looking for a very hard and dedicated worker in the North West, let me know!)

Casey has mosaic Down syndrome. For quite a while, Casey struggled with having mosaic Down syndrome. However, after talking these months, I think that he has turned his struggles into something positive and something that he can make a difference with. I am so proud of him! This is a huge turning point in Casey’s life and because of this he has wrote a heart-felt poem that he wanted to share with all of those who have mosaic Down syndrome or any disability.

I hope you all enjoy Casey’s poem! Please be sure to leave your comments on this post. I know that Casey will enjoy hearing feedback. By the way…. Casey’s birthday is New Year’s Eve! HAPPY BIRTHDAY CASEY!!!!

Mirror Mysteries

I’ll never give up on you, I will scream for the certainty
This is the essence of me; let me speak for the unspoken stories
There’s hope for us, this denies me to fade - I will fight for the truth of reverent veracity
All of us have unique and relevant disabilities

I will scream, I will dream
I will seem to be normal
and you will deem me as a usual thing
A father from the table, I am the living fable
And I speak for those who can’t fight the labels
This is the theme of interest for my shapeless diversity
For the innocent anonymity’s in a misunderstood society

I’ll never give up on you, I will scream for the certainty
This is the essence of me; let me speak for the unspoken stories
There’s hope for us, this denies me to fade - I will fight for the truth of reverent veracity
All of us have unique and relevant disabilities

And you will see, for this will be
In the still of valor, to help and tower
you will finally know who is was, that gave irregularity power
They will polish the wrong, they will divulge in the titles [that meant nothing]
This is the cycle of humanity, and I will see you in sympathy
You will remember us in the definition of the better strangers
Unified we stand - we’re all around you, together.

I will never give up on you, and I am screaming the truth

Casey Morton

12.31.1979

Diagnosed with mosaic Down syndrome

This is dedicated to any and all people/persons with known disabilities in the world. Kristy Colvin! I’m giving this to you. In hopes this reaches people, that are looking as I was…for answers. I hope [I really do] this helps people in anyway. This is my final hindrance of letting that get to me. And I’m finally channeling it, to make better what people have made it so perpetual in today’s society people with disabilities are not able to write something like Mirror Mysteries, and I want to be that example. To help others create what ever they dream, and be what ever they dream. I dreamt I was going to be a great father!!! And I am.

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

Last week, Beth of Wear Many Hats had surprised me with a Lemonade Award for the hard work that I do on this blog. It was an unexpected and welcome surprise and I was grateful for the time she spent looking at my blog, among all the others that she searched, trying to find a worthy recipient of the award.

It is always important to have a little fun in your life, no matter what your interests, or your situation. And, passing on a little kindness and recognition is always important to everyone involved! I know in the midst of my hectic week last week, receiving just a bit of recognition certainly helped lift my spirits!

So, as recipient of the Lemonade Award, I had to search for other recipients to pass on the kindness that Beth had shown me.

I went through countless blogs from our Today.com bloggers in search of the worthy participants for the award. I wanted to find blogs that I had not yet visited and had truly shown that they were making a difference with their blog. In judging, I looked to see if they had really put effort into their blog and made sure that that their blog looked presentable and was easily understood. I wanted to find blogs that may be of interest to my readers and would help them in some way.

This was not an easy task, because there are so many fantastic blogs on the net and especially here at Today.com!

But finally, I narrowed down my 10 lucky recipients. Please visit their sites and have a look around! You may find something of interest to you and it may be helpful information for you and your family!

<<The Envelope Please>>

The Lemonade Award goes to….

CONGRATULATIONS! Your blogs are great and I think very worthy of this award!