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.

§

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!]

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

16 responses to “When Stars Align

  • akbutler

    Best. Post. Ever.
    You just showed the world the power of one family’s story.
    I love you and am so ridiculously proud of you.

  • Niksmom

    THIS is the heart of it, right here: “along the way, realized I could do something about this.” And you did. Not alone, not single-handedly. But YOU carried the heart, the passion, the drive…you kept an UN-silent vigil for this baby being birthed now.

    So.Damn,Proud.Of.You. You have changed lives. That’s a gift of the spirit which many will never know. I couldn’t be prouder of you if you were my own sister or child. You moved a mountain.

  • Erin

    So incredible. So awesome. Nothing short of amazing. Congratulations and thank you!

  • Darlene

    I think it was your Christmas song that finally turned the tide. Great job Rachel!! I remember that night at the Shea’s house when you spoke I thought- Wow, that is awful about Military Families and how awesome that they have someone with such a clear unyielding voice to get the message to the important ears. What an amazing accomplishment!!

  • Kelly

    There are no words to express my gratitude for what you and everyone working with you have done here. This will help my family, my little girls, directly, and there is nothing on this planet that means more to me. God is smiling on all of us today because of you. Thank you and God bless you and your family.

  • Erica

    As a military mama with two boys on the spectrum, thank you from the bottom of my heart to everyone who worked so hard for this victory.

  • Stimey

    It turns out that one person CAN make a difference. Congratulations.

  • Neil N

    Congratulations, you should be tremendously proud. This is a long overdue step.

  • Lisa

    Congratulations! Your work is amazing!

  • Kim

    Smiling from ear to ear as I read through this post. What you’ve done is HUGE my friend. So proud of you!!!! You’ve proven that one person can make some pretty big, far reaching ripples in the pond. Xo

  • Shannon

    You’re kind of a bid deal. :) Good job girlfriend.

  • Lou Melgarejo (@loumelgarejo)

    I can’t tell you how happy I am that this has happened, or how proud I am of the hard work of the many people that made this possible. Military families are so great and so important to the protection of our liberties. They deserve the best, and these steps help get us a little closer to insuring they have the best.

  • cynkingfeeling

    Tears of happiness for you and all of the families that you helped by speaking up. Congratulations!

  • rhemashope

    Congratulations. You are all kinds of amazing. You inspire me.

  • confessionsfromhh6

    I can’t tell you how happy I am to see everyone’s hard work pay off. Thank you just doesn’t seem adequate for all you’ve done for our families.

  • Karin Wulf

    Thanks for sharing the step-by-step on how change happens. Anyone who isn’t inspired by your story isn’t paying attention. It’s a big world out there, but making a difference isn’t just possible, it’s imperative! Now I’m going to go click on change.org again. Karin

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