Tag Archives: john larson

When Stars Align

Me: “I really don’t feel up to going tonight.”

SGM: “Me either. But hell, we have a babysitter for once.”

Me: “Good point.”

–        That was the evening last February, 2011, headed out the door with SGM to meet with Congressman John Larson and other families with autism.

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I didn’t want to.  I had really, truly avoided this fight for more than a year after RM’s autism diagnosis.  But my name was out there and the woman was persistent.  She wanted a face for military families.  Eventually, she just didn’t take no for an answer.  How ironic.

Shannon Knall, the Autism Speaks Advocacy Chair in Connecticut, had made up her mind that the TRICARE nightmare for military families with autism needed a voice.  She had planned events with Congressmen Joe Courtney and Chris Murphy to talk with all families living with autism and she had dragged me along kicking and screaming to speak on behalf of those who serve.  Ok, so maybe I only kicked and screamed at first.

It came rather naturally for me.  Call it what you will – loud and obnoxious or passionate and articulate – but I didn’t seem to have much trouble speaking up.  I made great connections at these two events and along the way, realized I could do something about this.

After working for a very long time to get Congressman John Larson to come to the table, Shannon called me to say the time had come.  SGM, now home from Afghanistan, would join me at a gathering at a family home in West Hartford, Connecticut, to talk about autism.

Something truly amazing happened that evening.  Mr. Larson hadn’t known how many military children had autism.  He hadn’t known how bad the TRICARE/ECHO problem was.  He simply hadn’t known.

In a single conversation, the game had changed dramatically.

It was only a matter of a couple of days before I received that first phone call from his office.  Was I willing to share more?  Hello, have you met me??  “The Congressman wants to do a bill.”  WHAT?!?!?

Fast forward to yesterday.  With HR2288 CMKAA still a viable option, Congressman Larson went for a huge play and sought an amendment to the FY2013 National Defense Authorization Act (NDAA – the defense budget itself).  This would mean that autism treatments would be included in TRICARE basic entitlements and be passed as part of the NDAA going forward.  After an agreement had been reached the day before with the House Armed Services Committee (HASC), then reneged at midnight, Mr. Larson took to the US House floor to take one last shot at it.  Armed with embarrassingly large photos of our little family, he spoke so passionately about doing the right thing.  He spoke about the struggles our military families face with a child on the spectrum, without the care they need.

Mr. Larson’s efforts were snubbed by ‘procedural’ House rules.  He would have to try another avenue, but it wasn’t going to happen this day.  Ok, I thought.  Sobbing uncontrollably, I eventually pulled myself together and realized that regardless, this was HUGE.  We had brought the discussion to the floor of the House and we were going to move forward with CMKAA.  I kept my faith.

While cleaning up around my own house floor, I left C-SPAN on in the background.  At around 3:30pm, HASC Chairman Buck McKeon took to the floor to begin the debate on the NDAA.  Suddenly, I heard the words “TRICARE” and “ABA”.  My heart nearly exploded.  I was frantically listening and rewinding and listening and rewinding.  DEAR GOD, I DO NOT SPEAK CONGRESS – SOMEBODY SAY SOMETHING I UNDERSTAND!!!

I called my fellow Warrior Mama, Karen Driscoll, and screamed into the phone, “Karen! You have to call Stuart and find out what just happened! I think we did it, Honey! I THINK WE DID IT!!!”  She was just as stunned as I was and told me she would call Stuart Spielman of Autism Speaks Government Relations immediately and find out what was going on.  Stuart had been working tirelessly for the last year to make this dream come true.

In the meantime, I was just shaking violently in my living room desperate to know wtf just happened.  Literally, rocking back and forth.

The phone rings.  It’s a DC number.  OH. MY. GOD.  Here it comes.

Congressman Larson: “Rachel.  Rachel.  We did it.”

I won’t go into further detail of how I was simultaneously sobbing, hyperventilating and screaming on the phone with my United States Congressman.  I am sure you can imagine.

He managed to continue to speak above my gasping for air to tell me that it came down to Representative Tom Rooney walking across the hall to speak to Chairman McKeon.  “Sir, this is personal.”  Rooney had related his own experience with a military family with a child on the spectrum.

And that, my friends, is the best example of how much it matters when we speak up.

So many dozens of stars did indeed align over the last two years.  Too many to recount here in this one post, just as there are too many people on this earth who played a role in moving those stars into place.

We still have work to do.  We must go through the motions of securing this amendment through the Senate when they vote on the NDAA.  But I am confident we have covered all the bases and I am assured we can make that happen.

It will take a few years to implement these changes to TRICARE once we have finished this legislative process.  But it will happen.  It is a huge leap forward for all children with disabilities.  It literally paves the way for bigger and better things in the care of our kids.  Our work is not done, but we can all be so proud today.

“Thank you” will never be enough, and I cannot possibly list every individual I must thank in one post, but for beginners:

Thank you to Karen Driscoll, Marine Corps wife, mother of three, and my mentor.

Thank you to the many more military parents who have been in this battle long before I came on the scene.  Never giving up.

Thank you to Jeremy Hilton, Military Spouse of the Year, for his dedication to helping all military families with special needs.

Thank you to my dear fellow military spouse, Jeneil, and her faith and family.  Mahi, you inspire me to continue to always believe He is near.

Thank you to Jess at Diary of a Mom.  My friend, my inspiration to keep moving forward.

Thank you to Bob and Suzanne Wright of Autism Speaks.  It could not have come together without your support and your efforts to enlighten the world.

Thank you to the entire team at Autism Speaks and Autism Votes – namely Stuart, Rick, Ali, Judith, Nora, Mark, Dana and dozens more.  You all came together and learned a new piece of the puzzle and ran with it to make the world a better place.

Thank you to Congressman John Larson and his staff – namely Dave and Eva.  I love you for your service to The People.

Thank you to Representative Tom Rooney for speaking up.

Thank you to Chairman McKeon for doing the right thing.

Thank you to Mike Strautmanis and Brad Cooper for listening.  I’m still waiting to hear about those tiny doors, Mike.

Thank you to my family at AMFAS and Nicholas who continued to encourage me.

Thank you to my friends and family and my blogging sisters and brothers.  You rocked it out, people.  You ROCKED. IT. OUT.

Thank you to everyone I spammed with blog posts, petitions, emails, tweets, and general pleas for help.  You are all heroes. You are all ROCK STARS.

Thank you to Shannon.  I didn’t want to, but you didn’t give a crap about what I wanted ;0)

Cheers.

[Ed note: Oh yeah, we really are not done yet – keep signing and sharing the petition at Change.org – we must secure the Senate version of the CMKAA amendment to NDAA! Every time a signature is received, the petition and notification are sent directly to the offices of the Senate Armed Services Committee leadership. THANK YOU!]


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


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!]


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