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.


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!]


Troops in Contact: a guest post by SGM

The satellite radio crackles to life; “Iron Gray TOC, this is Butcher 6 receiving indirect fire at this time”.  The radio operator answers the call; “This is Iron Gray TOC.  Roger, requesting air support at this time.”

Troops in Contact (yes that means what you think it does) were a daily occurrence as an Infantry Battalion Operations Sergeant Major in Afghanistan.  I had dealt with quite a few of these by February 2010 while working the Tactical Operations Center (TOC) in theater.  I had learned to deal with them in a cold, detached manner dispensing assets such as artillery, air support and helicopter support to assist in the fight against the Taliban.

So when I heard those words “[RM] has autism” through a poor overseas cellphone connection I was initially unmoved.  My training kicked in.  Clear the airspace and give me a fire mission of 155mm artillery

It wasn’t until I got back to my bunk after a 17-hour shift did the words sink in.  AUTISM!?  Artillery isn’t going to help that.

Maybe it was the distance from home or the 130-degree Afghanistan heat that removed me from the reality of what I had heard.  I just could not believe my little girl had autism.  Yes, she was born with multiple disabilities but autism was never on the radar.  Having a nephew on the spectrum, I knew the very broad and somewhat vague meaning of an autism diagnosis, but stumbling through one in a war zone left me asking what is autism?  Probably not a good idea to sidetrack my Intelligence Section asking them to research that one for me.  To say I was busy during this deployment would be a gross understatement.  The TOC was the heart of the Battalion’s operations and the heart never stopped beating.  However, I had managed to find a few spare moments to Google ‘autism’ which confirmed my suspicion that artillery was not the kind of support needed to be called in this time around.  Instead, my Googling from Afghanistan proved that the primary assets for this mission would include treatments such as Applied Behavior Analysis (ABA), speech, occupational and physical therapies.  I assumed RM’s school would be all over that.  Evidently, as it turned out the school system in our town was not a ‘Friendly’ element.

Never leave a fallen comrade.

Failure in my business is not an option and it would appear that my town was accepting defeat and leaving my little girl behind.  I was appalled.  Months went by with frequent calls from Mrs. SGM sharing the emotional and often fruitless results of meetings with the town, special education lawyers and one very rude town special education administrator.  It began to affect my performance.  I struggled to focus on my daily responsibilities and at times had to force the issue of autism out of my mind.  Staying focused meant ignoring my family so that I didn’t get a soldier killed in theater.

I decided to weigh in on the issue with the town.  I am sure many of you have seen that letter. Lucky were the town personnel who were failing my child that were out of range of my artillery support.  I think one of the frustrating things for me was the inability to affect how the fight with the town was going from Afghanistan.  Mrs. SGM gave updates almost daily. I cannot take credit for the battle that was fought and won in regards to getting RM her required therapies at an outplacement school.  Mrs. SGM led that assault and is now deep in the trenches to change TRICARE military insurance to move autism benefits out of ECHO and make them accessible to all dependents as standard care.  Doing so will not take the shock, fear and disbelief out of receiving an autism diagnosis, but it will help diminish the confusion, frustration and roadblocks to success in getting our kids what they need.

TRICARE should be like Combat Support.  It should be there when you need it with no questions asked or forms to fill out and should be ready to provide cover for all Troops in Contact including our precious military children with autism.

[Ed note: Please support our military families with autism by contacting your legislators --> HERE <-- and telling them we need HR2288 The Caring for Military Kids with Autism Act (CMKAA) to pass. You can learn more about the Congressional Briefing on autism in the military, scheduled for January 31, 2012 --> HERE<--.  CMKAA would essentially mirror the insurance reform we have seen pass in 29 states mandating autism therapies as a part of standard medical care. Currently, the military family must pass through EFMP to access ECHO to gain therapies such as ABA - and then it only covers approximately 10-12 hours per week. The recommended amount of ABA is between 25-40. Also, access to EFMP and ECHO varies greatly from one area to the next. Keep in mind, we now have hundreds of thousands of National Guard troops answering the call to duty who do not live near a Military Treatment Facility. Also, dependents of retirees (even those forced to medically retire) lose all access to all autism therapies via ECHO. We are asking Congress to make autism therapies a part of TRICARE standard, to remove the dollar cap on care, and therefore be available to both active duty and retirees. 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.]


What the Battle Sometimes Looks Like

The following letter was written on the battlefield in Afghanistan, July, 2010, after the district special ed director reduced the hours of paraprofessional support for RM at her YMCA summer camp without prior notification, or grounds to do so.  Just another perspective of what our military families must do to advocate for our kids with autism.

 

Dear [Special Education Director],

My Name is [SGM]. I am the father of [RM] and a taxpayer in the Town of [StimCity].  I am currently deployed to Afghanistan as the Operations Sergeant Major for [an Infantry unit].  You may recognize the unit as [part of the battalion] is stationed in [StimCity] on Main Street and is one of my companies.  Currently, there are 499 soldiers deployed here from Connecticut of which I am responsible for their care and well-being in an extremely hostile environment.

The key to my success in the past 24 years, 3 wars, 7 countries and an untold amount of soldiers is COMMUNICATION. General Patton once said, “keeping the foot soldier informed is incalculable.”  This holds true in the civilian world and business world of which you, [Special Ed Director], and your co-workers are currently employed.

I find it hard to believe that anyone can actually get up in the morning and look themselves in the mirror and say, “I can’t wait to make someone angry today.”  So, I am thinking that all of what I am being told is a huge breakdown in communication.  If this is the case, we are failing not only our children, but ourselves. These children are our future - no matter how disabled.  These children will grow up and become the Department of Education, Police Officers, Firefighters, and Accountants of our retirement accounts. I am thinking again, that we should do our best to help them in any way possible.

“Department of Education”…  This makes me think that “educated” people work there.  And being such an important department with what I can only imagine is a very large salary budget (above the 600K maybe?) I would assume that [StimCity] would hire qualified personnel.  So, I am going to go out on a limb here and assume that all the people included in this email are educated and are qualified.

So this leads me to my question… Why am I having to write this letter from AFGHANISTAN to find out why a Town Worker that I assist in paying the salary for can’t seem to pull it together and communicate with families in a nice, civilized way?  Why are grown adults having to resort to email and lawyers to discuss the programs that children in a town as large and prosperous as [StimCity] are entitled to?

COMMUNICATION.

Somewhere along the line, we have a communication failure.  In my line of work this is quickly identified as ‘the dead pile up on the battlefield’.  In this instance, the ‘dead’ would be the children and parents that have come to a dead-end with a department established to HELP find them solutions to their issues.  We are failing.

Many people, who have little inside knowledge of how the military works except for what they see on television,  do not understand the real way we communicate in the Army. I very seldom bark orders, yell, nor do I ever belittle, degrade, chastise or berate soldiers in daily duties or on the battlefield. I give CLEAR orders and GUIDANCE in a voice that establishes trust and understanding.  I lead by example, and in return earn my soldiers’ undying trust, devotion and RESPECT.  They will follow me anywhere as long as I COMMUNICATE to them what we are doing and why.

We call this ‘Task and Purpose’.

With that, we accomplish amazing things.

So, [Special Education Director and Staff], what is YOUR TASK AND PURPOSE?

If you cannot answer this question without looking at your job description then you are wrong.  If you did look at your job description, you will not find the words ‘compassion’, ‘understanding’, ‘helpful’ and ‘committed to what is right’ – Reason: they are expected of everyone regardless of what we do for a living.

To help in this process I will be more than happy to sit and communicate with each and every one of you.  I will be home shortly for 2 weeks, and in a few months I will return for a longer stay.  I will be available morning, noon, and night to discuss my daughter and her education, the Department of Education, and even some of my experiences in better communication.

I welcome an open dialogue that will promote a FRIENDLY PROBLEM-SOLVING environment between parents and [StimCity Personnel].  Because if we fail this cause – at some point - enough people like [us parents] will get together, pool resources and communicate together to form a plan that removes roadblocks to success.

I look forward to working with all of you to come to an agreeable solution to what is really a very simple problem to fix.

Respectfully,

SGM


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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