MOSAIC MOMENTS

I think maybe I have touched on this topic just a little bit a couple of days ago, however now that we are really going forward with this idea, I want to get as many parents involved as possible!

If you have a teenager or adult with Down syndrome, mosaic Down syndrome or any other special need for that matter, WE NEED TO TALK!

As a parent of an adult son with mosaic Down syndrome, I learned the hard way how broken our transition system is in America for those with any disability or special need. Like the parents before us who pioneered together to allow our children in public schools, we need to come together to make changes, real changes, to the transition system that is currently not working.

Some of the changes that need to be made have already been discussed with many parents I have spoken with. We need a system that works, so when a teenager or adult with Down syndrome (or any special need) finishes High School they actually have a real job or real college placement that will help them with a real career. We need a better system for independent living and real future planning! We need something that helps parents to transition too! As parents of children with special needs, all our children’s lives we have devoted ourselves to their care. We have a great support system in place. We have books and seminars and an outline to follow that tells us step by step what the best thing to do for our child is. Then, all of the sudden, our child is no longer a child and parents often feel lost and very alone. Many parents have said it was like getting the diagnosis all over again!

During our Research & Awareness Conference in Cincinnati Ohio in July , we will have a workshop where we can discuss all of these problems and together we can begin to find solutions! We will move forward with Dr. Libby Kumin’s research project that will tremendously help with the job placement problem and we will develop a committee that will be part of this pioneering event! 

This may not make huge changes for the parents of adult children with Down syndrome, but it will make a tremendous difference for those children of our future!

If you are interested in participating in this project, please leave a comment and include your email address in your registration to leave the comment and I will email you, so we can talk about the possibilities!

Together, we CAN change the world, but we have to really want to change it!

As a parent of a child with special needs, there is always a worry in the forefront of your mind about what you will do for your child’s future. For me, that worry was always something just too complicated to handle. It seemed to be something far too huge and perhaps out of grasp in the realm of my sanity. I like to be in control of things. That is just who I am and knowing that I do not have control over when I die, is a scary realization that I try to come to grips with.

Mary Anne Elhert of Protected Tomorrows attended our 2007 conference with a great deal of advice on future planning as a whole.  She explained that it wasn’t just a will, but planning for your child’s whole life. She takes the scariness out of it all and helps parents understand in easy terms what you need to do to ensure your child is taken care of even before you die. She will be with us again during our upcoming Down Syndrome Research and Awareness Conference in Cincinnati in July.

This workshop is very interactive and will address issues important to you regarding your family member with special needs. Topics of discussion will include Potential Funding Sources, Legal Options, Choosing Future Care People, Family Communication, Wills and Special Needs Trusts.

Mary Anne Elhert is the founder of Protected Tomorrows and had a successful career in the financial industry when she decided to act on her lifelong desire to specialize in serving the families of the disabled. Mary Anne’s younger sister, Marcia, had severe mental handicaps due to cerebral palsy. Although their parents were determined that Marcia should get the best possible care, they had also been confused how to plan for her future.

Like many families of children with special needs, they were scared of doing anything while they were alive that might jeopardize Marcia’s benefits she would need when they had passed away. So, the first family Mary Anne helped was her own. Mary Anne’s sister passed away at the age of 39, but Mary Anne and all the staff at Protected Tomorrows continues to go strong with Marcia in their hearts and minds.

One really awesome thing that Protected Tomorrow offers is their workbook called “My Special Life” This book is basically an instruction book for all that information that YOU know about your child or loved one that no one else knows. Think about it…. does your husband know the names of all the medicines your child takes daily? What about certain food or medication allergies? Does the person you plan to take care of your children in case you die, know what is in your child’s IEP? What about when your child has a melt-down? Does that person you have left in charge know the only thing that will calm your child down is his blue blanket?

This book enables you to get all that information down and not leave anything out! You can purchase the book on the Protected Tomorrows site by clicking here.

I know that none of us really want to think about what might happen to our kids if we suddenly die! It is a scary thing and something that I try to NOT think about! However, not thinking about it doesn’t make it not happen. It just makes us worry more in the back of our minds because we know that we don’ t have anything planned out in case we die suddenly. And, if you think about it, everyone dies “suddenly”. There is never a way of knowing the exact moment that you will die. So, this year, I am going to make a point to understand all I need to know for my kids’ futures. I am going to be sure to sit in on Mary Anne’s workshop and really soak in all the information that I need to ensure my kids are taken care of!

If you have a child with Down syndrome, mosaic Down syndrome, Autism or any special needs, This workshop is for you!

In case I die before July 10-12….. Garrett is allergic to Augmenten and wont eat pasta or any starches due to sensory issues and Tim’s doctor is Skip Jones. (he has all Tim’s daily med information). And  neither can sleep without a night light!

If you have not yet registered for the Cincinnati Down Syndrome Research & Awareness Conference you can find out all the info by clicking here .

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!

In the midst of the economic crisis faced by millions of Americans, you would think that uplifted spirits would be in order. While families are watching the news and being told that their money is being spent to decorate an executive’s office, or to pay for lavish weekend retreats they are, without a doubt, feeling despair. What American’s need in the midst of all this crisis is hope. Families throughout the US are feeling hopeless. And, with the media continuing to tell them that life as they know it is over, who can blame them for their despair? This past week, the American media passed up a great opportunity to tell the American people that even in crisis, even in change, there still is hope!

Last week I told you all about Sujeet Desai and how he and his family were headed for Idaho for the Special Olympics World Winter Games. I, like many Americans, searched through my 150 channels hoping for a glimpse of the opening of the event. I wanted to witness the extraordinary event as the Special Olympic Athletes lit the ‘Flame of Hope’. Not only did I want to watch my dear friend’s son on stage presenting with Olympic Gold Medalist, Kristy Yamaguchi, but also all the other amazing athletes who compete in the Special Olympics.

Sujeet is an amazing young man who has accomplished so much in his life that he continually knocks down the stereotypes surrounding those with Down syndrome. In his 27 years, he has mastered six musical instruments, received a 2nd degree Black Belt in martial arts (Tae Kwon Do), received Gold & Silver medals in the 99 Special Olympics World Games in Swimming and numerous medals in Alpine skiing, Cross-country running and Bowling. Sujeet is also married to his love, Carrie, and they live together in an apartment in New York.

Sujeet had the exceptional opportunity to be part of the opening ceremonies of this enormous event where he performed with his clarinet for an audience of 14000 people, including 2000 athletes representing 96 countries throughout the world!

Before Sujeet was to perform he and renowned saxophonist Kenny G did a private duet together.  Sujeet told Kenny G he practices three hours per day. Kenny G only practices 2 1/2 hours a day.

“I need to add an extra half-hour,” Kenny G told Sujeet“I heard you play yesterday and you sounded really, really good.”

This kind of praise, from a fellow musician, is the utmost honor which one can receive. For Sujeet and his family, it was a very proud moment! There was talk of performing together at the next Winter World Games to do a duet.

Sujeet’s mom, Dr. Sindoor Desai told me, “I was getting nervous waiting in the wings backstage, but he did the best speaking and music ever! There was pin-drop silence during his 4 minute performance and so many came after the ceremony with tearful eyes to hug him!”

A proud moment indeed!

However, their proud moments were short lived when they returned home to New York to find that not only was this event not broadcasted for others to see, but even the Special Olympics of New York failed to mention that their own delegate was a huge part of the opening ceremony on their website. This is a great disappointment and oversight on the Special Olympics of New York. However, I hope that they are working now to rectify the situation.

When Walter Goverde from a Dutch documentary crew asked why there was such a lack of American media when he had traveled so far for the event, Tim Shriver, CEO of Special Olympics International, said “The country’s very distracted right now. There’s a lot on people’s minds. There’s a lot of news coming out of Washington and New York, and there’s a certain focus on those things. It’s too bad because I think a lot of people would be delighted to see there’s a message here about what you do in a crisis. There’s a message here about what a crisis affords you the opportunity to do, to think differently, to change paradigm, to reinvent yourself in some respect … so, we just have to keep telling our story the best we can, and we hope people will come and pay attention. When they don’t, we’re frustrated and disappointed, but it doesn’t change the fact that the story is the best story out there.”

I agree with Mr. Shriver. We had the opportunity to have this uplifting hope come to us all week long. Now, with Friday, Feb 13th being the last day of the events, our Flame of Hope may continue to be Ashes of Despair.

I would like to call on each of you to call your local media. Television, Radio and Newspaper. Tell them that you need the FLAME OF HOPE! Tell them it is not too late! Encourage them to interview an athlete in the area that was part of the Winter World Games. Tell them about Sujeet and how amazing he is!  Tell them your own story and how having a child with Down syndrome or any special need is not hopeless! Tell them that in the midst of crisis, there is a beautiful Flame of Hope! We are all fighting together here for one common goal. To let the world know that our children matter! The media wouldn’t want the public to know that. They would much rather give you all the bad news and despair!

If you are an athlete who has competed in the Special Olympics World Winter Games, please leave a comment about your experience! We would all love to hear all about the event and I know the behind every great athlete, there is an even greater story just waiting to be told!

For lots of pictures of the event, you can click here.

Please click the “Buzz UP” button as well! The more clicks, the bigger the chance this news will reach the top pages on Yahoo News!

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!

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

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!

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!

I was talking with Martin and Claire over at Special Friends Online. Special Friends Online is a great site that allows those with learning disabilities, parents, care givers, and providers to get together and talk in a safe, secure environment and make friends along the way!

I had written about Special Friends Online last month. You can read that article by clicking here.

So, while I was talking with them, I learned that they have just put up a new addition on their site! For those who would like to announce an event that pertains to the disability community, you can do that now on their Notice Board.

For a limited time, you can join Special Friends Online for Free and after joining you will have access to that Notice Board to include your information!

Another great service that they offer is the Charities Page. If you are part of, or know of an organization that is not listed here, let Martin and Claire know and they will get it up there! They have a very impressive, growing list and as I was scrolling through it today, I came across a very cool website that I think everyone will be interested in!

If you have a child who is non-verbal or has communication difficulties, this may be your answer!

I Need Help (c) Communication Bracelets help those who have trouble communicating their wants and needs. I checked it out and they are all between $3-$4 each! Definitely worth the price if you have trouble communicating! They also say that this is great for those with sensory issues because of the embossed design and flexibility. If you are interested in learning more or purchasing these, you can click here for their site.

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Did you like this story? Click the Buzz Up button to make your vote! The more votes the more we spread awareness about mosaic Down syndrome and Down syndrome!