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.

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/