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The Briefing

I tried very hard to remain calm the days before the briefing.  My speech had been finished for weeks.  I felt confident that I had done all I could to promote the briefing and fill the room.  But I was still overwhelmed on the inside.  The stress was enormous, the pressure to do right by our military families was immense.  Just a few days before, I got pretty sick.  Beautiful fever blisters took up residence on my lower lip and chin making me terribly self-conscious.  The last ‘look’ I was going for at the briefing was ‘punching bag’.  But I realized pretty quickly that my words mattered so much more – and on that front, I was ready.

The room was full.  It was bursting at the seams kinda full.

There were so many families there!  YEAH!  That meant more to me personally than any legislative staffer that showed – and there were a few of those, too, which was good.  But I want to sincerely thank the families that attended.  No one understands more than I what it took for you to be there.  THANK YOU.  I want you to know we are devoting ourselves to making this happen for all of our families.  And your presence said so much to your fellow military families who could not attend.  Again –  THANK YOU.

We were set to go.  It was very well-organized and my sincerest thanks to Autism Speaks and the staffs of Congressman John Larson and Senator Kirsten Gillibrand who attended to every detail.

Stuart Spielman of Autism Speaks was the emcee, and he did a fabulous job.  Thank you, Stuart.  Rick Remington and the Communications team from Autism Speaks were phenomenal as well.  My sincerest gratitude to everyone who contributed to making this event possible.  (Thank you, Ali!)

Ok.  Now on to the good stuff.

Image Courtesy of Autism Speaks

Congressman John Larson [D-CT], my Congressman entered the room and took to the podium on a mission.  His voice was certain and his words were deliberate.  He spoke of our conversation last February 2011 and the impact our families’ struggles had on him.  He heard and listened that evening and it has stayed with him each day since.  Now sitting at the end of the panel table I began sobbing through his words.  Someone had listened.  To me.  Someone wanted to fix it just as badly as me.  I was overcome with the enormity of all the hard work of this last year and how fruitful it truly proved to be as I sat in this briefing room.

 

The Congressman finished his remarks and left the podium stopping to shake the hands of each of our group of presenters.  He got to the end of the line; there I stood still wiping tears away when he grabbed my hand, put his other arm around me and said, “Thank you.  Thank you, Rachel.”

All I can say after that was how relieved I was when I was not next up to speak.  Rather it was time for Karen Driscoll, Rock Star Autism Mama from ACT Today for Military Families, to do her thing and educate all those in attendance (some legislative staffers, some folks from TRICARE and other organizations) about the reality of the ECHO program segregation of autism treatments.  As usual, she nailed it and there was little to discuss.  Autism therapies in ECHO = WRONG.

We were also honored to have Dr. Geraldine Dawson, Chief Science Officer of Autism Speaks, speaking on the science of autism.  You see, the DoD has long been arguing the validity and effectiveness of Applied Behavior Analysis (ABA).  No worries, Friends.  We now have permanent record of Dr. Dawson speaking at this briefing in support of military families having access to ABA as “the safe, effective medically prescribed standard of autism care.”  Hooah, Geri!  THANK YOU!

It was my turn.  People, let me tell you, I was also on a mission.  I had no doubt that my message was clear and would be heard once again – NO military family deserves to be denied appropriate, accessible best-practice medical care.  Military families with autism are proud families, too.  We want the best futures possible for our kids.  We want to serve our country, too.  And when our soldier’s work is done, we want him or her to retire knowing that they have earned a secure future of care for their children.

Though my speech came easy to me, I had rehearsed it a thousand times in prior weeks; I was not prepared for the unexpected flash of PTSD when I arrived at the words, “Now a Sergeant Major, it was only a month into my husband’s second tour in Afghanistan when he received my call to tell him – his baby girl had autism.”

I broke down in sobbing tears again.  So did most of the room I was told.  I could no longer see through the fishbowl tears that had settled on my eyeballs, but I take their word for it.  By the end of my speech, I felt pretty confident that I was heard and it was probably the first standing ovation I have ever received outside of singing The National Anthem (and those suckers had to stand).

Next up was Jeremy Hilton, a retired Navy veteran and stay-at-home-dad to a beautiful girl with autism.  His wife is active duty Air Force.  Jeremy spoke of the painfully long process to obtain the correct diagnosis of autism and went on to explain what little services they were able to access via ECHO – just four hours per month at a provider that was three hours away.

Karen Driscoll spoke again.  This time she shared her military family’s story.  She spoke of her husband’s service.  Jerry is a career Marine who has served two combat tours in Iraq as a MEDEVAC pilot, flying into hostile areas to retrieve our wounded.  He was doing just that when he learned of his own son’s autism diagnosis.  Karen spoke clearly and honestly about ‘the right thing to do’ in moving our legislators to take action and pass HR2288.  Thank you, Karen.  You are a force.

The briefing wrapped up with two more families that came forward to the podium.  An Army wife and mom came forward and spoke of the lack of support and services for her child with autism.  She was angry.  I don’t blame her.

But our last speaker was perhaps the most affecting.  A veteran of nearly 30 years came forward holding a picture of himself and his son with autism.  Scott spoke of reaching his 28th year of service to his country and preparing to retire.  When he presented himself for the retirement physical, he learned he had lung cancer.  And he was relieved.  Relieved.  About having cancer.  WHY?  Because it meant he had to stay in the service to receive treatment, and it meant that his son would continue to qualify for autism treatment via ECHO.  CANCER.  Scott may be one of the most loving parents I have ever met.  He felt blessed by cancer so that his son could be treated for his autism just a little longer.  And yes, THANK GOD, Scott is doing well today.

So you see, this briefing was kind of a big deal and I have so much more to share with you about my trip to DC.  But I have a lot of work still ahead, and so I will have to fill you in on the rest a little bit later.

THANK YOU to everyone who has supported me and encouraged me throughout this journey to help my fellow military brothers, sisters and children.  I have gained more blessings and learned more about life through these struggles than I ever could have without my daughter’s autism.

By the way, today is our Diagnosis Day.  Groundhog Day.  But for the first time in two years, I feel like I have woken up to a new day.  The curse and darkness of that word ‘autism’ have been lifted.  I now know without a doubt that my daughter and everything that makes her who she is, has been and shall continue to be, the most absolutely perfect gift God could have ever given me.

Cheers, my friends!

Rachel

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What I Signed Up For

Of all titles I hold, Mother is the one that has brought me here today to speak to you.  I am an Army wife as well, but that is a role I chose shortly after 9/11 with full knowledge of what I was getting myself into.  War was imminent, terror threat levels were the new casual conversation and I was marrying a career soldier who told me his duty would always come first.  And I signed up for that.

I signed up to serve my country, too.

And when my husband ran off with the other love of his life, the Army, to fight on the battlefields of Afghanistan as an Infantry Platoon Sergeant, I proudly kissed him goodbye as he patted my belly and told our daughter to behave for mama. He told her he’d be back to meet her when his work was done.

My husband was due home on leave for my daughter’s birth the following summer of 2006.  He would arrive a day late to meet her, but in military life it was understood that a day late was far better than not at all.

Our daughter, RM, was born with special needs and required intensive medical care.  She barely survived those first weeks and yet at 15 days old, my husband kissed her goodbye and headed back to Afghanistan.  He would return home again on a Red Cross alert just days later as our baby girl began slipping away.  My husband remained by her side for another two weeks of emergency leave to watch her inch her way to stable condition before leaving her in her hospital bed once again to return to war.  Because that is what we signed up for.

It was my job to serve on the home-front.  Our daughter had a feeding tube and was in congestive heart failure.  She had open-heart surgery at 4 months old, but by then Daddy was home to help and RM’s health was improving.  Not once did we worry about finding her the medical care she required.  We felt blessed to be a military family and often joked that we only paid eight dollars for hospital parking for open-heart surgery – as it should be when you serve your country.

In early 2010, under falling snowflakes my husband kissed his healthy, beautiful little girl goodbye once more as the battalion loaded up and headed back to Afghanistan.  This was Army life, so we wiped our tears and held our heads high, proudly waving to Daddy as they pulled away.

Now a Sergeant Major, it was only a month into my husband’s second tour in Afghanistan when he received my call to tell him – his baby girl had autism.

“What does that mean?” he said. “Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.”

But I had no answers for him.  I had no hope to offer.

I had no points of contact as an active duty Guard family.  I had no one to ask, “What do I do next?”  For the next several months, there were many more phone calls to my husband in Afghanistan, and still I had no answers to offer him.

What I had learned was that autism therapies were largely unavailable to our military families.  I had learned that the small amount of services offered through the Extended Care Health Option were grossly inadequate and often impossible for military families on the move to access.

My husband has served honorably for 25 years.  He was a scout sniper in Desert Storm.  He has earned a bronze star, an army commendation medal and a combat infantryman badge with star for his service throughout two tours in Afghanistan. He has also been awarded a meritorious service medal, three more army commendation medals, six army achievement medals, and eight good conduct medals.  He has earned the right to retire.  But he cannot.  Because he worries every day for our daughter and her future and he knows that he loses what little services are available to treat her autism if he retires.  He worries every day that if he gets sick or injured and is medically retired, that he loses that coverage.

There is one more tour to Afghanistan on our horizon.  And my Command Sergeant Major will go once again when duty calls.  Because that is what he signed up for.  That is what our service as a family requires of us.

But not being given access to the care our children need is NOT what we signed up for.  This is NOT what any military family deserves.  We sacrifice so much – YEARS at a time and we complain little.

Since my daughter’s diagnosis of autism, it has been my determination to see that the right thing is done here.  Because if you ask any military family what they DID sign up for, they will tell you – freedom – yours and mine.

And as a mother, I simply cannot let any of our military kids go without the treatments they so desperately need to which their service to our country undoubtedly entitles them to.  Because they did not sign up for THIS.


Backstage

Load-in.

For most evening events it happens around 1pm.  The trucks begin to arrive and the once cavernous arena comes to life with loud thuds and shouts echoing across the stage.

“Sound check! T-minus four hours! Move your ass!

If it was a Saturday show I was psyched.  It meant I could work load-in and watch barely two dozen stagehands construct the most sophisticated sets and lights with stairways, exploding elements and speakers each the size of a greyhound bus.  It meant all day backstage watching the contents of three or four trailer trucks choreographed with miraculous precision into a seamless 90-minute dance of pure showbiz magic.

I loved my time as an event security supervisor.  A huge departure from my 9-to-5 in finance, it was exciting and strenuous work.  And on occasion it was a little dangerous.  But nothing could have kept me away.  I had the unique experience of sitting right in front of a small theater performance by Dave Matthews Band, it was my job to drool over Dave inconspicuously while keeping the rest of the ladies from attacking him.  No complaints about that.  I shook hands with my idol Sarah McLachlan (I used to be a singer, too, and LOVE her music) and I had the opportunity to tell her how much her talent meant to me.  Over the years in that business, I enjoyed meeting many talented people who inspired me.  I learned so much about what it takes backstage to pull off a performance that people can really be inspired by, not just entertained.  An evening that will stay with the audience forever, a true lasting memory.

So here I am today.  Working backstage once again, but this time it’s a very different venue.  A Congressional briefing.  Congress.  Pause.  Breathe.  Yeah, seriously – CONGRESS.  ME.  How the hell did I get through security HERE?

It started in a very unlikely place.  Not on Capitol Hill, no millions paid to lobbying firms.  It started in someone’s living room in Connecticut.  With one Congressman.  And one family’s story.  Ours.

Way back, what seems like lightyears ago last February 2011, SGM and I attended an evening of discussion between families living with autism and our Congressman, John Larson (D-CT).  I had already done two of these kinds of events with other Congressmen in Connecticut and at each I had walked away feeling good that one more legislator had now heard about the unique challenges facing military families with autism.  But this exchange was different.  Something beyond bending the Congressman’s ear had taken place.  He was moved by the numbers. 1 in 88.  He was shocked by the lack of access to care.  Less than 10 %.  What likely stirred him the most was that my husband standing beside me, having served twenty-four years and three overseas deployments, could not retire because he would lose what little services are available to treat his daughter’s autism.

A few days later, a phone call from Congressman Larson’s staff: “Can I ask you some more questions?”  Ask me anything. I have been waiting so long to tell the world.  “How does a military family go about getting autism therapies through TRICARE?”

OMG.  Seriously?  Do you have a few hours?

“Well,” I began, “it amounts to jumping through flaming rings of fire while blindfolded with your feet and hands bound with duct tape while your child with autism is left spinning in a corner and your husband dodges IEDs in Afghanistan.  Do you want to hear more?”

And so it began.  By June, Congressman Larson’s staff and the Government Relations team at Autism Speaks along with myself and Marine Corps Warrior Spouse Karen Driscoll had finished the draft language of a bill and it was now ready to drop.

The several months that followed felt like a kick in the throat.  We rode a rollercoaster through the debt-ceiling crisis in August, threats to cut the defense budget and then it was the holidays and Congress was on recess.  I had been told more than a few times that this bill’s chances were plainly slim-to-none.  With all of the budget cuts looming, our military families with autism just weren’t on the radar.  This show might get cancelled before it even begins.

But I still showed up to work backstage.  I felt it was my duty.  I still asked folks to contact their member of Congress and ask them to support HR2288 – the Caring for Military Kids with Autism Act (CMKAA).  I couldn’t give up.  I had some help, too.  Diary of a MomTry Defying Gravity, Hopeful Parents, Lou’s Land, stark. raving. mad. mommy. and RANTS FROM MOMMYLAND, just to name a few.  Like professional stagehands, the coordination was incredible, the focus and dedication to making it all fit together was impressive.  The set being constructed was coming along.

Autism Speaks stepped up in a major way and began putting the word out about the bill.  They highlighted our efforts on Pearl Harbor Day with Autism Votes creating an Action Alert with easy access for people across the country to contact their legislators and ask for support of CMKAA.  We now have 35 Cosponsors from both sides of the aisle agreeing that our military families are deserving of treatments for their children with autism.

Backstage over the last several weeks, a handful of us military parents who signed up for load-in have been calling members of Congress to personally invite them to this briefing.  We have politely badgered some staffers more than once.  Personally, I have tweeted and facebook’d the crap out of every Member of both the House and Senate Armed Services Committees.  Because we need an audience for the show to go on.

On Tuesday, the lights will go up in a room on Capitol Hill filled with superstars from across the country.  You might recognize of few of the names on the set list, but I doubt you’d know the major stars until you hear their stories.  But trust me. Their stories will have you on your feet screaming for this bill to pass.  It’ll be an event that stays with you for a lifetime.  I know it will stay with me forever.  I have never worked so hard on a backstage load-in.

So what do I wish most for people to learn from my story? 

That it is the backstage crew that makes the magic happen.  That EACH AND EVERY PERSON can make a difference by speaking up.  That working backstage might be the most life-changing job you will ever have.

I want you to hear that a stay-at-home-mom (or dad) who hasn’t earned a paycheck in nearly ten years can DO something just by sharing their story.

Backstage is where it all begins.

[To learn more about the Congressional briefing on Autism and its impact on our military families, go –> HERE <–.  You can read the copy of the bill and find out ways to support CMKAA –> HERE <–. Thank you!]


#fitn

Twitter much?

No?

Don’t blame you.  I was a non-believer until this past summer.  It terrified me, and to a degree still seems so very strange.

Twitter is the most difficult thing to describe to a non-Tweeter.  You have these hashtag (#) thingys to follow tweets categorically.   You ‘Follow’ other people and hope somebody ‘Follows’ you back.  Then there is the Twitter Lingo that contains more acronyms than the Army – who would have thought that was possible?  Oh – and Twitter Etiquette.  You must be sure to thank Tweeps (your Twitter Peeps) for RT’s (Re-Tweets of things you tweet) and so forth.  Then there are MTs (no, not ’empties’, but Modified Tweets) which means you had to shave down an already ridiculously-coded, short 140-character tweet so that you could add your own comment without going over the 140-limit.  I am sure there is more to say about Tweeting, but I am still learning.

So to my point.  No, really, I have one.

Tuesday evening, I had just duck-taped the children put the children to sleep for the night and lovingly kissed their foreheads as I whispered, “THANK GOD FOR BEDTIME” “I love you, my sweet child.”  I was exhausted after one full week so far without the SGM home and was looking forward to any rerun I could find of any of the Real Housewives dramas to enjoy with a glass of wine.  But I had to check the Twitter Thingy first.

New plan.  No time for RHoBH.

It was the New Hampshire Primary, and I had totally forgotten until the feverish tweeting I saw as the polls began to close.  Campaign staffers and political news junkies were tweeting faster and more furiously than a pack of tweens hyped up on sugar and Bieber Fever.  There was a genius new hashtag started and everyone who was anyone on Primary night was using it: #fitn = ‘first in the nation’.  Brilliant.  I pounced on it faster than the hapless miners on Gold Rush stumbling upon their first nugget in the virgin ground of the Glory Hole.  (That’s a whole ‘nother post, by the way.)

It went something like this:

@mittromney Who will be #fitn to address the #1in88 #military kids w/#autism? http://cmkaa.org #CMKAA #HR2288

And it got some attention.  Which it should have since I melted my laptop sending that tweet to as many political correspondents as I could before I was cut off entirely, reaching my daily Tweet limit in about 45 minutes.  God bless the cut & paste.

In the end, with bloodied fingers and an acute attack of carpal tunnel, a few more folks learned about the needs of our military families with autism.  We gained a few new supporters.  Our voice grew just a little bit louder.

If you are on the Twitter Thingy, go ahead and help get the word out, please.  You can tweet about the bill using the hashtag #cmkaa and the site: http://cmkaa.org.

I could use all the help you can offer.  I think social media is going to prove to be the greatest tool for good mankind has ever devised.  It sure beats that crazy thing called the telephone any day.

Cheers, My Friends.

Rachel

(@MrsSGMKenyon on that Twitter Thingy)

[Ed note: YOU can support HR2288 – Caring for Military Kids with Autism Act at http://cmkaa.org!  With one click you can tell your Congressperson to sign on to this critical legislation.  You can also sign our Petition to The White House –> HERE <– to make autism therapies accessible to all military dependents.  AND DON’T FORGET to tell your US Representative and US Senator to attend the Congressional Briefing on Autism and Its Impact on the Military Family on Tuesday, January 31, 2012, 11:30 am at the Capitol Visitor Center, Room SVC 203, Washington, DC.  I will be speaking on behalf of our families.  We are also honored to have Dr. Geri Dawson, Chief Science Officer of Autism Speaks and Karen Driscoll of ACT Today for Military Families presenting.  It is sure to be a truly informative event for our Legislators and Staff.  Thank you.]


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