DON’T LET THE WORD "FRAGILE" FOOL YOU!!

So, though I have homework to be doing at this very moment, I have decided to first write a blog post.  Sometimes I write better at 30,000 feet.  Although, without Jammie proofing this it could be a mess!  Remember, I am no writer.  While the emotion is fresh, I want to share some activities and thoughts about the last couple days I spent in Washington D.C..  Those who know me know I have three sons, Andrew, Tyler, and Austin.  My son Tyler three years ago was diagnosed with Fragile X Syndrome.  Today he is five years old.  As a professional in the field of special needs since 1987, special needs instantly went from a 50+ hour a week job to a lifetime mission.  As Tyler's Dad, I attended the Ninth Annual Fragile X Advocacy Day, 2012.  On Tuesday I attended training with around 150 others on what to expect, what our asks were, and how to go about navigating the democratic process.  On Wednesday we gathered on Capital Hill for a group picture and the day began!

After the group picture, Congressman Gregg Harper (MS) whose son Livingston (22) has Fragile X, treated us to a small tour of the Capital.  He and Congressman Eliot Engel from New York, co-chair the Fragile X caucus in Washington and are our champions.  As a group we sat in the House of Representatives while Congressman Harper thanked and motivated us.  After our time with the congressman we divided and conquered.  Almost always in groups, we visited members of the House of Representatives and the Senate.  I was fortunate to travel through the day with a person from my neighboring and home state of Iowa who was on her forth year at Advocacy Day.  It was nice to have the presence of a veteran.  She is a mom of four children, all of whom have been diagnosed with Fragile X.  Pretty remarkable when the percentage is 50% for a carrier of passing on the gene.  By the way, for those who do not know, 1 out of every 130 woman is a carrier.

We started out the morning delivering packets of information to members of the house from Iowa whom where not in Teri Jo’s district.  Handing them off to staffers, we asked that they look things over and ask their bosses to sign our requests and support the bills we were supporting.  I will talk more about those later.  We walked.  Then, we walked some more!!  The Democratic Process is a long one…literally.  But without complaining (at the time, I am complaining a bunch today about my feet hurting) we forged onward.  Teri Jo and I attended a meeting with Jeffrey Cohen (NFXF Director of Government Affairs), his son Josh who has Fragile X (made me think about Tyler when he gets older), Brad Whitus (NFXF Board President), and Congressman Eliot Engels Senior Policy Advisor, Heidi.  The meeting was a good look into the struggles facing not only Fragile X but also government in general during an election year.  It also showed me just how sad partisan politics can be and how what one wants to do and what one has to do for party can conflict.  It was the most eye opening and sad meeting I attended all day.

After that meeting Teri Jo and I headed to my first officially scheduled meeting with Congresswoman Kristi Noem’s staffer, Sam.  For those of you whom are unaware, most meetings in Washington are not with the Senators or Representatives but with a young staffer.  They are the ones who must be respected because they are the ones who will fight or drop your cause.  The real work being done in our Capital is by young people in their early 20’s but these young people are smart, resourceful, and passionate.  It was also a lesson in that meetings may be in hallways, lunchrooms, or on the run.  Our meeting with Sam was in the hallway and it turned out to be a good thing.  The Congresswoman came walking up and stopped to ask us about our cause and concerns.  What we just shared with Sam we got to share directly and…I got a photo opportunity!!  It was pretty cool.  It was also wonderful to learn that Congresswoman Noem and already signed on as a co-sponsor of one of the bills, the ABLE act.  Feeling good about her representation.  Meeting one down and in the books!  Success!

Our next stop was a meeting with Senator Harkin’s staffers.  This was Teri Jo’s meeting and we were joined once again by Jeffrey Cohen and Josh Cohen.  Senator Harkin’s office had four members of the staff present and there was not a real sale necessary here.  Senator Harkin historically has been the greatest advocate in our country for special needs issues.  His office is also the author of the Keeping Students Safe in School Act.  This meeting was a thank you and please continue meeting.  Teri Jo was able to show and tell about how important the funding we receive helped establishing the Fragile X clinic in Iowa City which has tremendously helped her family.  I was able to share that very clinic is where we take Tyler as well…closest one to South Dakota.  It was emotional and it was wonderful.  Senator Harkin’s people understand the fight for special needs issues.  Just a side note, Senator Harkin’s staff were not young but rather seasoned veterans of the political process. 

Next stop, Megan with Senator Tim Johnson’s office.  Again this staffer was young, polite, smart, and helpful.  We again shared our stories about our families and the challenges that come with children, which have Fragile X.  We also always shared the joys and how those joys fuel our hopes.  Hopes that will no doubt need help from our government to achieve.  As before, we wanted Senator Johnson’s office to know we were not asking for more…just the same.  We let them know we were not naive about understanding the budget issues and the fact we are in an election year.  We simply don’t want those facts to be a step back for our kids and our families. 

Teri Jo and I left the meeting with Megan and said our good –byes.  I had a meeting with Senator JohnThune and his staffer Jane and Teri Jo was off to Senator Charles Grassley’s office.  Side note:  Over the past nine years of advocacy day Senator Grassley has not supported one Fragile X initiative in nine years…not one I could find.  My Iowa peeps should possibly send an e-mail or make a phone call to that office.  Though he may be doing good things for Iowa, he is not helping much with persons impacted with Fragile X issues.  My meeting with Jane was much the same as the others.  It was in the basement lunch-room.  No commitments and a lot of we will have to explore that more kind of comments.  Unfortunately, Senator Thume’s mother had passed away that very morning and he was not able to make the meeting, as he had to fly home. 

The work for US is not done.  Yep, when I say US, I mean YOU also…not just those who were in DC.  I am going to post some links to fact pages on web sites regarding the issues.  The funding pieces are Fragile X specific but the bills are things that impact all people with special needs and their families.  Funding first.  We know over a million people are effected with a Fragile X and associated issues in this country.  We know that there is a known genetic link between Fragile X and Autism.  Around 50% of all people with Fragile X also are on the spectrum.  Tyler qualifies.  The drugs that are being tested for Fragile X…testing that started out of the moneys we have and don’t want cut…are also being tested with individuals with autism.  If we can find a cure for Fragile X we will be on our way for a better understanding of the issues around Autism.  Twenty-five centers now exist…thanks to the moneys we don’t want cut…they allow for better tracking, knowledge bases, testing centers, and support for families impacted with Fragile X.  We are not asking for more.  I am willing to drive the 5.5 hours to Iowa City.  Just don’t cut so I have to drive further.

Now, turning to the bills.  The bills we want support and passage for are the ABLE act, the Keeping Students Safe in Schools act, and the TEAM legislation.  I will put a link at the end for all three so you can better understand the issues.   The bottom line is there is no reason for these not to have bipartisan support because they cover ALL special needs.  The Keeping Students Safe in Schools act is for ALL students’…not just special needs kids.  Senator Thune’s staffer was clear when talking about our funding issues that the Senator doesn’t like to support any one or group of disabilities or disease related groups because it isn’t fair to other groups. He wished he could support them all. I can truly appreciate that.  But these bills cover everyone, so politicians who do not want to fund disability specific appropriations should NOT have a problem with these three bills, which cover EVERYONE. 

Back to the US part…thought I had forgotten?  Here is what I will do.  I will follow-up with thank you cards.  I will follow up with e-mails and phone calls asking my politicians to continue to look at and support my requests.  I will promise to go back to Washington DC and be back in their faces next year and every year after that as long as I am able and can afford it.  I will not stop.  YOU, well you can first check out the links I will provide.  You can call or e-mail your Representative and Senators asking for support for the ABLE act, Keeping Students Safe in School act, and the TEAM legislation.  Ask them to support Fragile X related funding.  Ask them to join the Fragile X caucus…its free for them to join.  You could make a donation to the National Fragile X Foundation, which allows others to continuously pursue quality of life issues for our families.  Finally, if you do nothing else, continue to pray.  Pray for Tyler.  Pray for my family.  Pray for all families who are on the journey of Fragile X. 

Pray and understand one thing that I learned this week.  Don’t be fooled by the word Fragile!  It simply describes a piece of the X chromosome not the Fragile X Community.  Don’t think for one minute that the tears I witnessed this week signified weakness.  Those tears were resolve and passion.  Forged in the battles of lost dreams and earned on the fields to keep our kids safe, happy, and healthy.  Those tears are medals of honor.  Don’t think that you have a year until Fragile X Advocacy Day roles around again.  Today, tomorrow, and every day until next year is advocacy day.   In the X-Men series, Wolverine is filled with Adamantium…the toughest substance known to mankind.  The Fragile X community is loaded with it!!  Don’t let the word Fragile fool you Washington D.C..  We will stay very strong and just keep getting stronger!

LINKS:

 http://www.fragilex.org/

Find your Representatives:  

http://www.congressweb.com/cweb2/index.cfm/siteid/NFXF

Budget Issues:

http://www.fragilex.org/2011/fragile-xtras/the-2012-federal-budget-what-it-means-for-fragile-x-programs-and-funding/

Keeping all Students Safe Act:

http://www.fragilex.org/2011/public-policy-and-legislative-advocacy/advocacy-day-posts/ad2012/introducing-the-keeping-all-students-safe-act/

ABLE Act:

http://www.fragilex.org/2011/public-policy-and-legislative-advocacy/advocacy-day-posts/ad2012/the-able-act-of-2011-112th-congress/

TEAM Legislation:

http://thecpsd.org/2012/02/15/cpsd-senate-action-alert-on-team-legislation/

Autism and Fragile X
http://www.fragilex.org/fragile-x-associated-disorders/fragile-x-syndrome/autism-and-fragile-x-syndrome/

Rebel Without a Clue!!

Does it make you a rebel?  Are you “getting one over on the man?” Or, are you simply an ass?  These questions and several others cross my mind every time I fly.  The issue is around turning off your electronic devices for take off and landing.  Have we become so dependent to our electronics that the thought of it being completely off as asked is so hard to comprehend? 

The reason that the FAA wants passengers to turn off their electronic devices is because there is a chance that certain devices could interfere with the communications of the airplane.  These communications are most important at take off and landing.  The vast majority of problems occur during these two events with very few incidents once at cruising altitudes.  People against this will argue that there is no scientific proof.  Really?  You will risk an entire plane full of people because there is no “proof” insurance guy!!  My son Tyler has a puzzle that makes animal sounds.  It goes off every time we turn off the lights!    I would guess that certain devices could interfere, so turn your dang phone off!

So if it’s certain devices why to do all devices need to be turned off?  Maybe because flight attendants don’t need to try to figure out what device is what when they are preparing the cabin for take off or landing.  Quit giving them a hard time by not following the rules.  They do make exceptions for issues that involve health concerns but they do not need you giving them a hard time so you can get in one more round of Angry Birds!  READ something…look at the Skye Mall catalogue…do something but quit trying to get one over on people who do not make the rules.

I understand that human beings do not like to be told what to do…I get it. From a very early age kids say “no” and “don’t tell me what to do”.  But have we gotten to the point as a people that we are so above all rules that we decide which ones are right for us.  Even if people do not agree they should follow what is in place…in place for the safety of others.  Do you really think that the FAA is making up rules to “control you”?  In 2000, congress could not fully come to a definitive answer to whether electronic devices could interfere with take off or landing so they chose to regulate on the side of safety.  People, turn off your device and chat with a human being sitting next to you.  Maybe you will meet a new friend, meet someone famous, or simply make somebody’s day with a kind word.  If we continue to develop our technology without wisdom or prudence, our servant may prove to be our executioner.  (Omar N. Bradley)

Not the Right..Not the Left...Who am I?

Okay, blog number one and I’m starting with politics.  So many options…Tyler’s success, Andrew’s growth into manhood, Austin’s new words and skills…and I chose politics.  I think it is simply because nothing frustrates me more these days than the division of our country.  Can an American still be in the middle?  Is there a middle to even stand on?  Sometimes I feel like both sides of the isle are tossing the ball over my head and I don’t get to play.  A ball called liberty.  Am I free to disagree with either side?  How about both?

Let me first tell you how I am rejected by the Left.  I believe in a strong military. I feel private business will always provide better services than the government.  I believe that too many taxes stifle the economy.  I believe in gun ownership. I believe that coming into a country illegally is illegal and puts undue stress on the economy. I believe in a woman’s choice to choose sex or no sex; Birth control or not.  But once life is conceived it goes from choice to responsibility.  I love meat.
 

I am rejected by the Right also!  At one point I was a literal “card carrying” republican but have given up.  I believe that the upper one percent of individual wealth should contribute more.  I have failed in marriage.  I have inhaled.  I have very good friends whom are gay and lesbian.  I believe that there should be a separation between church and state where religious choices are not legislated.  I believe that the government is responsible to ensure the rights and lives of those with special needs and mental health issues are given safety and quality.  I call the President, “President Obama” not Mr. Obama, out of respect for the office.  Come on Fox News…knock it off!

I do not hold ill feelings toward those who do not hold to the same beliefs.  I am tired of the attacks from both sides and the outrages accusations.  Does the Left really feel that the right only cares about fetuses and forgets the baby once its born?  Does the Right really believe that the left is void of all morality?  To the extremes I think the answer is yes.  Unfortunately, it is those extremes that seem to be running our country…running it right off a cliff. 


Tune to MSNBC and one would think that all Republicans want to take poor kids out of school and put them into work programs to earn more money for the wealthy.  Turn to Fox News and you would think that all Democrats want to give kids weed and condoms.  The extreme arguments cloud the issue and close the door to healthy debate.  Let me give an example, which was sparked by a post on Facebook yesterday.  On the Tea Party sight they posted “The average price of a gallon of gas was $ 1.79 when President Obama took office. The current average now is $ 3.51 per gallon. Is it any wonder the economy is so bad?”  This extreme statement is not a logical argument!  

 

Let me explain why.  They give the following link:  http://data.bls.gov/timeseries/APU000074714?data_tool=XGtable  Going to that chart shows that at one point gas prices were $4.09 under Bush in June of 2007.  It makes their argument now look stupid.  The argument should be that during the Bush administration the average price for a gallon of gas was $2.16 verses President Obama’s, which has averaged $2.88.  Do the math…I did.  The average over time is a better argument than random extreme numbers thrown out.  The argument could be continued by showing that the $.73 difference equates into major money for the average American.  The average American household uses 1,100 gallons of gas a year.  That $.73 equates to $803 a year more we are spending on average under President Obama on gas alone.  

 

Now, for those on the left who argue Republicans are the reason for the rich getting richer and the poor getting poorer.  Look at the facts.  Lets start with going to http://www.census.gov/hhes/www/income/data/historical/household/ and clicking on chart H-3 which will give you the Mean (Shared average) income for the 5 classes the census bureau looks at for wealth.  It goes from 1967 through 2010.  I looked at increase in average wealth and the percentage increase in wealth.  I highlighted Republic presidential years and Democrat presidential years.  Looking at the top 5 percent, middle income and lowest incomes, here is what I found:

                                                Top 5%                      Middle 5%                    Lowest 5%

Nixon/Ford                $21,239.00 or 42%         $5,011.00 or 39%              $1,346.00 or 42%

Carter                        $19,784.00 or 28%          $5,010.00  or  28%            $1,158.00  or 26%  

Reagan/Bush SR.    $75,124.00 or 52%          $12,930.00 or 42%            $2,946.00 or 41%

Clinton                   $107,792.00 or 43%          $11,602.00  or 27%          $2,901.00 or 27%

Bush JR.                 $42,309.00 or 14%           $7,899.00  or 16%             $1,499.00 or 13%

Obama                        $-7,023.00                       $-823.00                           $-622.00

In the two years represented by President Obama wealth has actually been lost in all the classes!  The largest discrepancy in wealth disparity actually occurred during the Clinton administration.  During President Clinton's time in office the wealthy increased their wealth $107,792.00 or 42% while the lowest 5% only increased by 27%.  The classes gap increased!  It increased by 16% while Reagan and Bush Sr. combined increased it by 11%.  The least amount of increase in the class gaps occurred with Bush Jr. but all anyone heard is how he was making the rich, richer and poor, poorer.  According to our governments data that is not true.  If you like I can send you my highlighted and noted spreadsheet?

Maybe the saddest story presented that all classes have decreased in wealth  since President Obama has taken office...ALL.  The only other time that happened is in the beginning of President Bush Jr's presidency which included 9/11.   He also was the first Republic president to increase government.  Increasing government does not help the poor!  The greatest increase to the average income for the lowest 5% in this country have been with Republican not Democrat presidents.  The greatest gap between the rich and the poor happened with President Clinton...a Democrat.  People just need to stop relying on what they hear from their party and the media and get out a dang calculator.  I know the United States has fallen in their math scores but you can use a calculator for this assignment.

Where are the free thinking Americans?  I really need someone to lead who can unite and understand what most Americans understand...stop spending and increase income.  IT'S the ONLY way to not fall on economic hard times.  Will there be a leader who recreates the middle or are my sons destined to take sides...maybe even against one another.  We have been there before.  History does have a way of repeating itself and that more than anything scares me!  Thanks for letting me vent!

  

Introductions to Get Things Going!

I have decided to jump in and enter the world of blogging.  I am not a writer!  I have no idea how much I will actually write and how often I will be moved to post.  I do feel that this will be a more appropriate place to share some of my thoughts and feelings about my life, politics, beliefs, etc. than simply posting random thoughts on Facebook or Twitter.

So, a little about myself!  I am 43, married to Jammie, and father to Andrew (Andy), Tyler (TJ), and Austin (still waiting on a nickname).  Andrew is my oldest son (19) and a freshman at George Mason in Fairfax, VA.  He is an incredible song writer and musician.  www.andygeels.com   He is also gifted at acting and has an amazing sense of humor.  After my ex-wife remarried she and Andrew moved out to Virginia Beach, VA and I followed a year later.  Eight years ago I remarried Jammie.  Jammie and I were blessed with Tyler 5 years ago.  After missing some of his developmental markers we brought him to a developmental pediatrician.  Three years ago we found out Tyler has Fragile X Syndrome.  I am sure I will have many posts in the months to come about that journey.  He is such a great kid and a huge blessing in the lives of all he meets.  Though he comes with some special needs he makes up for it and than some with such a special ability to make people smile.  He is pure joy!  Austin was born 19 months ago and is a neuro-typical child.  NO delays there!!  He forces Tyler to be a big brother.  He also forces mom and dad to have to work out simply so we can keep up with him.  We recently moved back to the mid-west where Jammie and I both were born and raised.  We live in Dakota Dunes, SD.

A tad on my work history.  I started working with individuals impacted by Traumatic Brain Injury in 1987.   I served adults with Traumatic Brain Injury for 14 years in the capacities of direct care, manager, and administrator.  Since 2001 I have worked for The Mandt System, Inc. and serve as Director of Operational Sustainability.  I am a sought after conference speaker, trainer, keynote presenter, and behavior consultant. As a parent of a child with special needs, as well as a professional in the field, I am able to  bring a unique blend of personal and professional insights into my presentations.  Over the past decade I have traveled the United States and Canada with the main goal of helping to create and sustain safe working environments.  When it comes to the history of caring for individuals with developmental delays, intellectual disabilities, mental health concerns, and overall challenging behaviors, environments have been non-inclusive, coercive, and inhumane in many ways.  Though in recent decades things have improved, they still have a long way to go.  Little did I know when I started this journey so many years ago that it would become personal in a very real way.  My goal is to make the world a better place for all people but my focus is on those who often lack their own voice to make that world a possibility.  It's no longer about a professional duty...it is a personal calling.

Okay, that is about it for now.  I am sure that I will be adding things in the days, weeks, and months to come!  Please check back and see what I have to say.  Did I mention I am not a writer?