Monthly Archives: January 2012

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.

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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!]


Ride the Train Over to the SPD Blogger Network

Good morning, Friends.

Today I am honored to be a guest over at The SPD Blogger Network (SPDBN)!

Come see me –>HERE<–.

About SPDBN:

“This group blog is designed for those writing – or those who want to write –  about raising a child with Sensory Processing Disorder.  This is a  place to share stories.  All of our stories.

Potty training nightmares, sleeping challenges, Occupational Therapy success, picky picky eating (or none at all), social skills challenges, meltdowns at the grocery store, and the every day chaos (and joy) that is raising a child with SPD.  Here is a place for you to write it all down.”

It’s an amazing gathering place for all things sensory.  Come visit me over at the SPD Blogger Network today!  I am honored to have pulled up a keyboard and joined an amazing group of people riding the same train.  Did you know that both RM & The Boy experience Sensory Processing Disorder?  Grab your ticket and hop on the train for a few and see what we’re all about!  Join us at SPDBN!

Cheers,

Rachel


#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.]


MIB are coming to get me now

Hi.

I am pretty confident I am on a few different ‘Watch Lists’ by now.  But I’m ok with that.  Our military kids are worth it.

So humor me before I am dragged away in the middle of the night by Men in Black with night-vision who drive dark Suburbans with tinted windows.

Sign the White House Petition asking for the Obama Administration to respond to the 1 in 88 military kids with autism who are not getting the care they need.

It would be the best parting gift as I disappear from the face of the earth never to be heard from again.  Please tell my children I love them.

We have 30 days to get 25,000 signatures.  I know we can do this if everyone does their part.  This is not a petition about politics.  It is a petition for EACH & EVERY CHILD that serves alongside his or her brave mom or dad that sacrifices to keep us safe.

Are YOU willing to serve THEM?

Click –> HERE <– to go directly to the official page of We The People petitions to The White House.

Don’t be confused, this is separate from CMKAA.  I’m still working my ass off on seeing that bill pass.  But you see, I don’t like to wait on the ropeline for hours in 4-inch heels when I can sneak into the backstage with a little help from my friends.

Cheers,

Rachel

 

[Ed note: Please know that the only way we can reach 25,000 signatures in such a short time is by everyone sharing with their friends and family and so on because I don’t actually have 24,999 friends to coerce into my sneaky plan.  Don’t forget, this is not political, just the right thing to do. Here’s the actual link that you can copy and paste into your own Facebook, Twitter or email to all your peeps: https://wwws.whitehouse.gov/petitions#!/petition/make-autism-therapies-accessible-all-military-dependents-wautism-tricare-medically-necessary-remove/chcgvKdB ]

 


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