My Turn To Release

I have waited.  I wanted to sit down and write as soon as I saw the first news notification about the tragic events last Friday.  I wanted to yell, scream and accuse.  I wanted to blame and I wanted to defend certain existing beliefs.  I have read, I have shared articles and writings that I have felt were important, and I had one small rant about the media's irresponsible reporting around the fact the shooter "may have autism" while on Facebook.  However, I waited to have my full release in my writing until the dust had somewhat settled.  We have made it through the weekend and have started a new week and now I am able to release a little bit about my thoughts without running off of pure emotion and irrational justifications that accuse and cause division rather than love and heal.  It is time for me to share, so thank you for listening.

There are many public debates now starting to take place about lots of subjects.  There are the intense arguments about gun control.  There are conversations about the mental health system in our country.  There is a clarification about what Autism and Asperger’s really is from a behavior and neurological perspective.  There is a discussion about media's role in glorification of horror and tragedy.  There is an opportunity if we are able to step away from the anger and hate of this situation to grow as a society on these subjects.  There is an opportunity to turn tragedy into a better world.  These deaths do not have to be in vain if we are able to work toward a better world than the one we currently live in because of this tragedy.  The one issue however, I want to most address is the amount of statements being made implying that God was not in Sandy Hook Elementary because we do not allow prayer in school.  I have seen cartoons and comments about "Where was God?" and the response is we have taken Him out of schools....implying He was not there as evil destroyed innocence.  This is WRONG!!

I assert that God was not absent from Sandy Hook at all but was FULLY present.  He was in the arms of teachers holding their students in a closet.  He was in the actions of school personnel who sacrificed their lives in trying to stop the gunman.  He was in the legs of a teacher who moved to shield her students.  He was in the words "I Love you" from teachers to their students so the last things their kids heard were not gun shots and the sound of suffering.  He was with every police officer and first responder who rushed into the building at risk of his or her own life.  He heard every prayer.  He knew every thought.  He felt every bit of pain. Finally, he was there to meet every victim as they left this world of flesh and blood and entered into a world of spirit and eternity.  It is ignorant to imply God was not there.  It is wrong to imply you can even keep God out.  I understand what these people are trying to say but you lessen my God when you think PEOPLE can keep him away with their laws.  You minimize an all-powerful God when you think a government can keep him out.  You put a false focus on what God's expectation is for us when you imply He was not there the day evil was unleashed on Sandy Hook Elementary.  HE was there, He is still there, and I praise Him for it.

I do not intend for this to preach.  If you do not claim to be a Christian I hope you can still find meaning in what I am going to say next.  Many associate 1 Corinthians 13 with weddings.  This however is some what out of context.  Paul was writing to the Corinthians about what it meant to be a part of the church.  What it meant to be a part of the body of Christ as the church is referred to throughout his writings.  He was writing them because they were divided.  The Corinthians where arguing about some who claimed to be a follower of Paul and others who said they were followers of Apollos and others followers of Cephas.  Sounds like American Christians battling over whether they are republican or democrat or libertarian.  What Paul ultimately says is Christ cannot be divided.  That the issues they were arguing over ultimately were trumped with Love.  Here is 1 Corinthians 13:

The Excellence of Love  

13 If I speak with the tongues of men and of angels, but do not have love, I have become a noisy gong or a clanging cymbal. ² If I have the gift of prophecy, and know all mysteries and all knowledge; and if I have all faith, so as to remove mountains, but do not have love, I am nothing. ³ And if I give all my possessions to feed the poor, and if I surrender my body to be burned, but do not have love, it profits me nothing.

⁴ Love is patient, love is kind and is not jealous; love does not brag and is not arrogant, ⁵ does not act unbecomingly; it does not seek its own, is not provoked, does not take into account a wrong suffered, ⁶ does not rejoice in unrighteousness, but rejoices with the truth; ⁷ bears all things, believes all things, hopes all things, endures all things.

⁸ Love never fails; but if there are gifts of  prophecy, they will be done away; if there are tongues, they will cease; if there is knowledge, it will be done away. ⁹ For we know in part and we prophesy in part; ¹⁰ but when the perfect comes, the partial will be done away. ¹¹ When I was a child, I used to speak like a child, think like a child, reason like a child; when I became a man, I did away with childish things. ¹² For now we see in a mirror dimly, but then face to face; now I know in part, but then I will know fully just as I also have been fully known. ¹³ But now faith, hope, love, abide these three; but the greatest of these is love.  (New American Standard)

God was in Newtown , CT because LOVE was there.  He still is there.  He will remain as long as LOVE remains.  The Greeks had three words for love and the type discussed here is agape.  Agape is unselfish love.  The kind that characterizes a loving God who would send his son to die for my sins though completely undeserved.  The kind of love that would shield a child from bullets.  This love was present in Sandy Hook Elementary.  God’s love showed He was there that day...through the actions of others.  Through the purity and innocence of children, it was felt by all of us.  Government cannot keep God out of schools or anywhere else, only individuals can.  Individuals who fight for their "rights" while ignoring the suffering of others. Individuals who put their wants above the needs of others.  Individuals who glorify politicians more than God.  Government will always fail you...God never will. 

On Monday as I dropped Tyler off to school he and I said a quick prayer before his aide swept him from the van.  We prayed for his protection, the protection of his peers, and all the employees.  I had never done that before I must admit.  Tears filled my eyes as I left him walking into the school smiling at his favorite aide...waiving at kids getting off a bus.  I sent him into school with God.... no one could keep Him out.  The teachers and aids in his school love him so much and unconditionally.  God is in that school.  There may not be prayer taught there, but there is Love.  You see up until that point I had never prayed with Tyler prior to school nor prayed for those who he spends his day with.  Government had not kept God out of his school...I had not put God into his school until that day.  I pray I never forget to put Him in there again. You see, government doesn't keep God out of school...individuals do.  I do.  When I fail to pray.  When I do not stop bullying if I see it.  When I allow a joke that discriminates.  When I do not give to a helping organization because I need the newest Apple product.  When I fail to Love.  May I constantly be reminded to love....not those who are easy to love....but those who need agape.  Unconditional Love.  Thanks for letting me have my release.

Inspired by Everyday People

-->

I am so torn!!  I have such hope and such despair at the exact same time.  Is it any wonder stress related illnesses are up, suicide is at epidemic proportions with our military personnel, divorce rates, child abuse, and tragedies fill our airways and permeate our lives?  As a society, we glorify that which we used to call dysfunction (MTV's teenage mothers and Jersey Shore)!  We are enamored by the mental health issues of others (Intervention and Hoarders)!  We put into cartoon form cruelties and hatred and the things we at one point wanted to hide our children from (South Park and Family Guy)?  News is driving politics from the extremes (Fox News and MSNBC).  I watched the Vice Presidential debates...there was no winner...but both sides are calling it their victory.  We are so divided as a nation.  Society spends most of its time pointing out how different we are...not how much alike we are.  I am exhausted!!!  Yet...I have hope.

I just spent six weeks on the road.  I have spent significant time over those weeks in Winnipeg MB, Charlottesville VA, Omaha NE, Anchorage AK, and Dowagiac MI.  I have interacted with people in airports, hotels, restaurants, in these cities as well as Minneapolis MN, Richmond VA, Detroit MI, Seattle WA, Salt Lake City UT, and South Bend IN.  There are so many good people out there!!  People who are just as tired as I of the ugly politics.   These people give a needed smile, head nod, and helping hand.  People who want to make a difference in others lives.  Some of these people give of their time, some of them give of their money, some of them have made it their careers whilst others choose a career that allows them the resources to give and make a difference.  They love through their actions and their kind words.  These people are not forced but give freely.  They do not demand that the government make everyone do their share...THEY do THEIR share.

The vast majority of my last six weeks has been with amazing people who care so much.  They are teachers, social workers, mental health workers, nurses, therapists, behaviorists, direct care workers, supervisors, and administrators.  They work long hours, have low wages, deal with challenging behaviors, are buried in red-tape, yet care deeply about the people they support and the people around them.  I am not blind to ugliness folks...I do know that it is not all wonderful and that there are those who do the minimums....those who are not so great...those who take advantage of others under a position of responsibility. 

However, as long as the people I have spent my last six weeks with are around I have HOPE.  Not hope in an individual who uses the word as a tag line to be elected but in everyday ordinary people.  Not in individuals who spend BILLIONS of dollars on campaign adds but in the people who spend $25 for a walk to raise awareness of how awesome a child with special needs really is.  Not in the people who are out in front of cameras getting sound bites but in those who are taking someone less fortunate on an appointment with no recognition or "photo op".  As long as people care for the comfort of strangers, I will not give up.   I am sad at all the negativity from both sides of the political isle.  I hope after all the politics ends that people will turn off their hate and turn toward someone in need...they could use your help...not your opinions.  Thanks to all those regular people who inspire me!!

My Thoughts on Health Care and Personal Accountability

So, here it goes.  I have decided to try and tackle the issue this week with the Supreme Court upholding Obama Care.   Let me state my conclusions and then explain my thoughts.... some of which will not be popular with my friends.  After spending a couple days examining how I feel about the issue I think that upholding the health care act was correct as Justice John Roberts interpreted the Patient Protection and Affordable Care Act.  Before some of you adamantly disagree let me explain some things first.  Just because I think that Justice Roberts is correct does not mean I am necessary in support of the way the Health Care Act is written.  I do feel something had to happen.  We NEED healthcare reform.  I do see some troubling pieces in the legislation.  But it is written as a tax and Justice Roberts’s interpretation of it is correct constitutionally.  The Presidents selling it to the US people as not a tax was deceptive. 

There are definitely good pieces to this legislation.  Let me list the pros and cons as I see them:

PROS:

·      Patients with pre-existing conditions will not be denied coverage.

·      College students can stay on parents program until 26.  Means 6.6. million young adults were able to sign up for coverage on their parents’ plans, including 3.1 million young adults who would have been uninsured without the law.

·      Provides increase in preventative care...much needed in our reactive based system.

·      Insurance companies can no longer limit the amount of coverage you can receive in a lifetime.

·      Preventive care --including mammograms for women and wellness visits – are available at no charge for everyone on Medicare.

·      Patient care must make up 85% of premiums limiting administrative charges.

·      Improved Medicare Prescription Drug Benefit for over 65 were drug cost kill the elderly.

·      People who retire prior to age of 65 will have fewer problems keeping health care.

·      Should reduce the premiums of people who don't have employer based insurance.... probably will do nothing for premiums of those who have employer based programs

CONS:

·      Government intrusion into health care.  We already spend more money then any other country on health care and are ranked 31st in the world for services.  I do not see Government bureaucrats decreasing the cost.

·      Decision-making power is turned over to bureaucrats, who pay no price for decisions that are costly or wrong.

·      Benefits insurance companies...large health care companies...drug companies...my medical and drug stocks took a nice increase. 

·      Hurts small start up health care business because of taxes.  Many sold off the day after the Supreme Court decision.  Small business is the countries backbone.  No incentives to start up a small company to create new health care advances.

·      Congress passed it as unfunded federally, which means a huge burden on state governments already broke.  Anyone in special education knows that the government’s promises for funds should not be believed.

·      People do not have a legal right to "opt out".  No body likes to be controlled.

·      Wealthy retirees face a BIG hike in Medicare premiums as much as $300-$700 a month.

·      Many employers will opt for penalties over the high cost of providing health insurance, which will put more into a government subsidized programs.  Eventually I see big business doing this as well.  Which means ultimately the government run program will control most people's insurance.

·      Unemployment will rise.... once the 2014 mandate hits employers will need to cut cost. 

·      The healthy and young will now have forced premiums to cover those with pre-existing and serious conditions

·      Primary care physicians will have to serve more customers, while facing decreasing reimbursements from both Medicaid and Medicare. This will lead to poorer care and fewer doctors.  We already are in a shortage.    You think your waiting times have been long now...just wait.

Now for some more thoughts over the past couple days.  I have seen many posts from people who I know have struggled with medical bills against Obama care:  Really?  Those who have bee saddled with large amounts of Dr. bills should know how terrible navigating the waters of health care has been over the past few years.  We struggle and we have insurance.  We have worked out payment agreements with several doctors over the years to pay a small amount each month.  When you walk out of the office of any Dr., do you have any clue as to how much it will really cost?  What other industry has this system.  I go anywhere else I know what the costs are the day service is provided.  I go to the Dr. and I have to wait and see.  Having a child with special needs, I like that an insurance company can not now deny us because of Tyler's Fragile X...even though he cost no more at this point than any other child.

I have also seen people posting against it whose parents receive Medicare/Medicaid assistance.  Are you willing to give this up and pay for your parent bills?  I am not.  My dad has received government assistance for many years now because of his medical issues.  Giving this up would have meant certain death years ago and a large financial bill passed on to my mother.  It is still difficult but without the government assistance he has received he would not be here and I sure am glad he still is here with his family.  Should I deny this to anyone else?  I am a pro-lifer...consistently!  I cannot say I uphold the sanctity of life and then believe assistance to the medically needy should be denied. 

I do think we are in trouble as a country and this topic will either tear us apart or could be the necessary step to help bring us back to the middle.  I have already stated in a previous blog how I believe we are being pulled so far to the right and the left that the middle is missing.  I pray this moves our country to the center.  I see lots of hatred amongst the extremes but I think both sides are wrong.  We do not need a repeal as the right is now shouting for... we need to fix the parts of this plan that put our country at risk.  We need to figure out how to relieve the stress on small businesses that this legislation will place.  Can we honestly think that 27 different taxes will not impact the middle class?  The left is shouting victory but everyone I ask to tell me what is in this legislation cannot begin to tell me.  Is legislation good for the people when it takes two weeks to read and a group of lawyers to interpret?  This administration is consistently deceptive with the legislation they pass. 

Ultimately, here is the problem as I see it.  WE...yes, ALL of us...are failing in our personal responsibilities.  I recently wrote the following for an ethics class that may best explain my feelings with the problem of letting the government be the watchdogs of our healthcare.  Government has a long list of corruption and failings when they are the ones responsible to watch over an industry...how's the housing market?  Remember any issues with businesses who the government bodies failed to catch (Enron, Worldcom, Bernie Madoff...)?  Many of the government watchdogs have been investigated for fraud and corruption. 

What happens when the Watchdogs fail?

Sadly it seems we are fast becoming a society that wants to pass the buck and duck the blame. Personal accountability and responsibility are buzz words about what people should do but are hard to find in practice. We raise our kids to tell the truth and when someone calls we do not wish to speak too we tell the children to say I am not here.   Justifying our behavior in every manner of selfishness. We teach children to respect their elders and then talk bad about our leaders and scream at the television about how moronic so and so is. We have been told to work hard and save. Yet, the average household in America is carrying $15,956.00 in credit card debt (www.creditcards.com). Amazingly, as a society when the watchdogs fail we are surprised to find they were in some manner looking out for their own selfish interest. Why are we still shocked?

I find it interesting that the editors in my ethics book about frauds and scams started the section on watchdogs with the quote "One feature that separates developed from developing countries is the degree of corruption. Most developed countries have institutional arrangements or government organizations designed to identify or control the amount of fraud" (Matulich & Currie, 2009, p. 263). What about the history of countries who have been developed for a long period of time? It would seem that history has shown, civilizations that reach their pinnacle start their demise when corruption starts to set in and the watchdogs become involved with the very thing for which they should protect society. This was the case with the Roman, Russian, and British Empires. 

There is the moral of all human tales;
’ Tis but the same rehearsal of the past,
First Freedom, and then Glory—when that fails
Wealth, Vice, Corruption—barbarism at last.
And History, with all her volumes vast,
Hath but one page—

—Lord Alfred Byron

Lord Byron's quote shows the tail of corruption is the tail of developed societies. We have laws to govern what should be done when the watchdogs fail. Restitution should be made and crimes accounted for within the scope of the law of society. In all the examples of the ethics book on fraud and scams, when failure was found it was stopped and those responsible paid the price in some manner. It is the way of a civilized people. The problem appears not to be what should be done but what does the growth in fraud and scams prevalence indicates about our society in general. The 1975 essay by Edward Goldsmith shows how immoral and political decay led to the fall of the Roman Empire. In his essay Goldsmith (1975) says the following:

Self-government is only possible among a people displaying great discipline and whose cultural pattern ensures the subordination of the aberrant interests of the individual to those of the family and the society as a whole. Under such conditions, there is little need for institutions and, as has frequently been pointed out, the only institution that one finds among tribal peoples is that of the Council of Elders whose role it is to interpret tribal tradition and ensure that it is carefully observed and handed down as unchanged as possible to succeeding generations. (Goldsmith, 1975, p.1)

What should be done when the watchdogs are caught napping at the prevalence in recent years are we as a people should examine what has gotten us to this point. We have become selfish and gotten away from family and society as a whole. Institutions and government have risen to take the place of personal responsibility and accountability. We have focused on selfish ends and failed to hand down traditional values to the past couple generations. It would seem we have demoralized an entire generation who now turn to the media to glorify what used to be considered dysfunction. The hope is that in recent years we have started to see many businesses create corporate responsibility codes. They are becoming more invested in stakeholder ethics and the understanding that there are more then just shareholders (Freeman, Stewart, & Moriarty, 2009). Reports also show a searching from our youth for jobs that can make a meaningful difference rather then a load of money (Payment, 2008). The millenials have grown up watching corruption, crisis, and chaos, and are hoping to figure out a way to not have it repeat. Let us hope that the next generation does a better job in the role of watchdog.

I wrote the piece just before the Supreme Court ruled to uphold Obama Care but find my feelings to be the same.  We must take care of those who cannot take care of themselves but not in a way that enslaves people to the government. We must be honest and that includes the government.  This administrations way of bypassing congress, passing legislation packaged as something it really isn't, leaking information cannot be the way of our countries future.  I hope our countries youth are not so busy glorifying teenage pregnancy, Jersey Shore, deception to not get voted off the island or out of the house, that they will see through the lies and get us back on the right track.  We need Americans...not Republicans and Democrats.  We need parents to raise their children...not by videos but by example.  We need to get back to loving our neighbors and giving our extra to those in need.... not storing it in storage containers.  We need to turn off the TV and read to our kids.  We need to focus on our own accountability before screaming about others wrong doings.  We need to stop spending what we do not have.  Imagine if everyone spent what he or she spends on their credit card payment as a donation to a non-profit organization, which helps others.  But we cannot afford to give because we can't afford what we have.  We are paying for items we don't even have anymore.  What if we had a nationwide yard sale?  Cash only because we don't want to add the debt issue.... all proceeds go to offset insurance for the poor?  All items not sold given to the needy?  Yeah, yeah...I know...we are all busy that day.

References

Freeman, R. E., Stewart, L., & Moriarty, B. (2009). Teaching business ethics in the age

 of Madoff. Change, 41, 37-42.

Goldsmith, E. (1975). The fall of the roman empire. Retrieved from http://www.edwardgoldsmith.org/28/the-fall-of-the-roman-empire/

Matulich, S., & Currie, D. (Eds.). (2009). Handbook of frauds, scams, and swindles: failures of ethics in leadership. Boca Raton, FL: CRC Press.

Payment, M. (2008) Millenials: The emerging work force. Career Planning & Adult Development Journal, 24(3) 23-32. 

Riding in Tokyo

I thought I would write a blog as I sit in the back seat of a car going from one airport to another in Tokyo, Japan.  This week has been one of those pinch me weeks.  Experiencing not hours but days of travel to get from one destination to another I am reminded about just how small the world really is though.  Sitting on a beach in Saipan and meeting a man from Spirit Lake, Iowa!  Having a beer with a man from Bangladesh who has a passion for immigrant workers on Saipan and a deep love for his three daughters.  The very same love I do for my three sons.  Enjoying the true family atmosphere of the Chamorro and Carolinian people.  What a week of experiences and…reminder of how much we at the heart of our humanity are the same.

I fulfilled this week what I have longed to do for years.  As a young boy my grandfather would come back from his trips with wonderful pictures and fabulous stories from places in the world and I remember thinking I cannot wait to do that!!  I also remember attending meetings of the travel group with Grandpa and hearing others tell their stories about far off places and the people who lived there.  When listening to the stories I was always intrigued with the tales of the people and the cultures.  Those stories were probably one of the reasons I perused my undergraduate in Sociology.   Then, in college studying sociology and learning so much about peoples belief systems, families, and overall cultures.

I truly thank God for the opportunities I have had over the past ten years traveling around the United States, Canada, and now abroad.  He has opened my heart to a love of people…His people…diverse and wonderful….fully created in His image.  I can’t help but think how global we are becoming as a community.  I also sit and imagine what the world would be like if we truly treated one another as Christ intended us to treat each other.  Not the Christ who some believe founded the Republican National Committee.  Not the Christ others would have us believe lived a hippie life just hanging around preaching love without a moral responsibility.  But the Christ who cared for the poor, developed twelve nobodies, wept when his friend died, and told a woman who had been sleeping around to go and sin no more.  The Christ my grandfather showed me in the people he loved from the various corners of the world.

Today I appreciate the lessons growing up even more.  I appreciate having had instilled in me a desire to go out and see other people live.  I appreciate being taught to allow others to show their love through their culture.  I appreciate the people from my training who opened themselves up to trust me and step outside some of their cultural norms in the name of keeping people safe  I appreciate working with people who feel the same way as I do about people.  Tonight as I ride through Tokyo….I am simply filled with appreciation.

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!