Tag Archives: army wife

Military Families with Autism Finally Make it to ‘The Show’

[Click above image to see coverage of HR2288 on Andrea Mitchell Reports MSNBC]

TRICARE does not cover autism therapies. A separate arm of services called the Extended Care Health Option (ECHO) which is secondary to enrollment in the Exceptional Family Member Program (EFMP) does offer what amounts to an average of 11 hours of ABA therapy per week – far below the recommended 25-40 hours per week.

With HR2288 – the Caring for Military Kids with Autism Act, we are asking that TRICARE take autism therapies out of ECHO and place them as medically necessary as part of TRICARE standard – thus making these proven treatments available to all active duty and retiree dependents and removing the dollar cap on care.

ECHO is not available to retirees.

Wounded Warriors who are forced to retire due to injury or disease do not have access to autism services.  According to TRICARE/DoD data, less than 10% of active duty families who do have access to ECHO are accessing autism treatments, yet none are receiving the recommended amount because of the dollar cap ($36,000 per year).

Also, families accessing autism therapies under ECHO are forced to choose between ECHO benefits in order to maximize autism therapies.  For every dollar of ECHO benefits used towards other services, a dollar of ABA is essentially taken away.  We seek to change that.  Autism therapies should not have barriers to receive care, they should be equally accessible to the military family as would treatment for heart defects or a broken arm.

With the advocacy efforts of Autism Speaks, 29 states have now passed insurance reform to include autism therapies as medically necessary – we are seeking to do the same for our military families.  This is not an issue of civilian versus military, it is an effort to level the playing field for ALL children with autism.  This effort neither detracts from or argues the continued efforts to make proven treatments readily available to all.  In fact, for TRICARE to step up with best-practice standard of care for autism treatment, they would be taking the opportunity to once again set the standard for medical care throughout the insurance industry.

Thank you to Peter Bell, Executive Vice President of Programs and Services for Autism Speaks, for his support!  It is the hard work of everyone at Autism Speaks taking the charge to make this right, along with all of the tremendous work they do for families across the globe, that gives me hope.

And my absolute sincerest gratitude to Ms. Andrea Mitchell at MSNBC.  Andrea was not only a gracious host, but she is personally committed to autism awareness for all of our families living with autism.

My thanks to Marvin, the lovely gentleman who drove me to and from the airport.  And many thanks to the entire team at Andrea Mitchell Reports for welcoming me and my story and treating me with respect and kindness.

Cheers.

[Don’t forget! You can write your US Representative & US Senator as often as your little heart desires! Tell them to support HR2288 –> HERE <–! THANK YOU!]

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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.


Reconstructed

 

Me:  These rocks are freaking HEAVY.

SGM:  It’s hot as balls today.

Me:  No kidding.

§

It was a surprise to have him home yesterday.  SGM had decided to take the day off and help me move some rocks in the backyard.  One of the many hidden treasures in this otherwise old and battered little ranch – a ridiculous amount of beautiful field stones, large and small, that we hadn’t noticed when we first came to look at the house.  Over the last nine years since, I had constructed a small rock wall that flowed along the front and side of the house containing a garden that I had long dreamed of growing.  Many late summer evenings spent tending to young blooms those first few years.  I was so very proud of all I had created – all I had poured my heart and soul into.

But hard times had come.

Prolific weeds had crept in and overtaken nearly every inch of breathing room between each of my precious budding flowers.  There just wasn’t any time or energy left at the end of the day to fight back.  I might grab hold of a single leafy weed or two as I passed by, barely noting the blooms being choked all around.  It was too painful to look more closely and recognize all that had been forgotten and neglected.  I was tired.  So tired.

Two Afghanistan deployments, 4q deletion, autism and family drama had choked the life out of my garden – out of me.  Out of motherhood, marriage and church, too.  There were days I felt hollowed and left to compost.

Those Dog Days Are Over now.  I have spent the last few months rebuilding, renewing.  Everything.  It started with a pile of rocks that I purchased three springs ago.  Dumped at the end of our driveway, it took me more than two years to place the gravel in the garden beds one barrow-load at a time.  Exhausting but rewarding work, it just took so much for me to find the energy among the chaos to get it done.  But this summer was different.  I was relearning what peace felt like.  Rebuilding, renewing.  Breathing.  Relearning love, patience and quiet moments with my babies.  Revisiting the love with my husband – what it felt like before and what made it new again.

Those weeds didn’t know what hit them.

The fury of which I ripped out the old and dying and replaced with new and exciting was dizzying.  But oh, how it felt so good.  Long summer days spent digging in the earth after countless hours wandering the local nurseries until I found just what I wanted to grow.  What I wanted to grow.

It was an amazing summer.  In so many ways.

The spaces between each of my precious buds are opened up once more, free breathing room to blossom.  Space for roots to be nourished, leaves to grow lush and for petals to welcome the sun.  As it should be.

Space in between my babies and me that can now be filled with sweet kisses and a thousand ‘I love you’s.  I feel the love for my children more fiercely and softly than ever before.  It hits me continuously like a freight train of feathers.  Like the moment they came into this world, there is nothing else like it – every moment, every day.  I can feel my heart once again booming, swelling, aching for them.  As it should be.

Now lies space to be Me again.  To be filled with time for reflection, personal pursuits and renewed confidence.  To feel passion again for the sun on my face and the earth in my hands.  I can breathe easy as I sway in the breeze with eyes closed and just daydream once again.

No more weeds.  No more chaos.  No more war.

All of which leaves me feverishly in love with the SGM.  It’s a new love.  It’s solid.  It’s hot.  It’s tingly and it fills me.  More than just a tag-team that survived the last five years, we are in love.  Madly.

Now that the gardens were tended to and made beautiful again, it was time to move forward.  I was ready to build upon what I have and make it new again.  I had always wanted to take the larger field stones and construct a fire pit.  I dreamed of a relaxing space for us.  Snuggling by a fire after a long autumn day of crunching leaves beneath giggly children’s feet.

So there we were, out in the yard working together to care for all we have built together over the years.  Appreciating the old, moving on from the tired, and constructing what remains.  Reconstructing from a solid foundation with an eye towards the future.  A joyful future to be lived in each moment and savored like a fine wine.

Our new fire pit made of old stones is perfect.  Last night after the children were tucked away, tuckered from a day spent in the yard and dinner served at the picnic table, SGM and I enjoyed the new Ranger TV.  And I told him – there was nothing I could want for.  I am so happy.

Thank you, My Love, for all of your hard work out in the yard with me this summer.  Thank you for the strength and love you share.  Thank you for each stone you labored over to reconstruct with me.  What we have built and continue to grow is beyond blessed.


Casualties of War

 

I am not naive enough to believe that war does not involve ugliness beyond my imagination. 

But what of the ugliness when it is experienced by the person you love most?

Who are the real casualties of war? 

There are so many.  So many faces near and far that haunt the soldiers we love the most.

Recently, I had a birthday – don’t ask which one, let’s play nice here – the good Sergeant Major (SGM) took me out to dinner at the restaurant we went to on our first date nearly ten years ago. 

It was a beautiful, hot-as-hell summer day and I was relieved to be sitting in the a/c and sipping a glass of wine and chatting it up with the love of my life. 

Behind me, above the bar area was a television displaying the latest headlines.  One video clip in particular caught the SGM’s attention and he apologized for the interruption but he had to take a moment to watch.  It was something regarding a group of Taliban training in the mountains of Afghanistan. 

“Wow. I really miss that.” 

What’s to miss?  The sound of bullets piercing metal?  The ringing in your ears after an IED explodes just a few meters away?  The scattered, smoldering remains of the suicide bomber and his victims?  The smell of death? 

No thank you.  I simply could not handle such things. 

A knot begins to form in my belly and suddenly I am overwhelmed by the enormity of the parts of my spouse I do not know or understand.  I am pretty sure I took a rather large swig of wine at this point. 

How do you reconcile the man versus the soldier? 

This is not a new subject between us.  My SGM and I have always talked openly and honestly.  He has shared the ugliness of war with me from the beginning, stories of his time as a scout sniper in Desert Storm.  He speaks cautiously, carefully choosing his words as though he has yet to process these events himself.  Often, it sounds as though he is reviewing a film he caught at the local cinema with a few buddies.  Surreal, graphic detail of the reality of war.  I find it all easy to take in at first and make sure that I am involved in the conversation.  I maintain eye contact and ask questions.  I ask him how it felt.  I ask him how it feels now.  The conversations flow, though they always come back to haunt my dreams. 

I am not so disturbed by the graphic nature of war as much as I find it a strange reality to process.  As if my brain is saying – hey, I don’t have a file folder for this.  So it becomes an awkward bubble of information that floats from one space to the next, occasionally popping up into my consciousness and reminding me that my SGM is truly a hero in so many ways.  That his service to our country to protect our freedoms does not come without a heavy price and many casualties – the lives that are lost, the lives that are changed forever and the distance that grows each day between a soldier at war and the loving arms of his family back home.  The sights, the smells and the carnage of war.  The heavy burdens our soldiers carry for a lifetime. 

So many casualties.  So many that go unnoticed – 

The little girl who fell to her death from the shockwaves of a Taliban mortar – some nights I swear I can see her face. 

The family whose son is ripped from their arms and made into a terrorist. 

The mother and father who willingly hug their child with pride and send them off to serve this great nation – never to feel that embrace again. 

The military spouse left behind to care for a child with autism – without the therapies that child needs and deserves – without a roadmap for this journey.

1 in 88 – unnecessary casualties of war.

It is time to change that. 

Please support the Caring for Military Kids with Autism Act – HERE.

We cannot change the world without first being the change we seek.

Thank you,

Rachel


Rock Star

 

What really defines a Rock Star?

I’m talking REAL. FANS. WAVING. LIGHTERS. ROCK. STARS.

You know who I am referring to here – the likes of Mick Jagger, Steven Tyler, Jon Bon Jovi and Bono – guys that have been consistently rocking it out for millions of fans for decades and never disappoint.  They are a rare breed of superstar that have escaped the need for radical reinvention of themselves – only an updated haircut seems to have been required for this bunch of Rock ‘n’ Rollers.  They just keep putting themselves out there and making magic.  Every time.

I have some experience in the entertainment industry.  I have seen a lot of what goes on backstage and I have to tell you these new reality shows looking to find the next big star are using the wrong criteria.  Sure, they may showcase some extremely talented folks but the chances of finding that singularly incredible Rock Star are slim to none.  Why?  Because the true definition of a Rock Star not only includes talent, but growth from within that moves that person to share their song with the world – not in vain, but with fervor to make a difference in this world.

I need to let you all in on a secret I have been keeping for years now – I just cannot contain it any longer.

I gave birth to a Rock Star nearly eight years ago.

It was pretty clear from the start that there was something really special about this child.  He had some innate ability to insert himself into people’s hearts.  He smiled early – no, it wasn’t gas, I assure you – he just connected in a way few babies do.  There was pure joy aglow in his eyes.  As a toddler, his giggles would travel through every person in the room with a contagiousness I simply had never seen before.  The Boy was an easy-peasy baby.  He slept through the night at seven-weeks-old and would refuel with 15-ounce bottles of formula using speed and precision that rivals NASCAR pit crews.  At the age of three, The Boy was still napping twice a day and growing so fast I could hardly keep him clothed.  I barely saw this child for the first four years as he slept nearly 18 of the 24 hours in a day.

And he was always HAPPY.

In 2006, his baby sister arrived.  The Boy was barely three when RM came home.  RM’s first year is a book in itself, so someday I will reopen the old wounds and share – but today is about The Boy.  From the very beginning of RM – the hospital, surgeries, tubes, endless doctors, piles of medications and the huge markerboard that filled our hallway listing the what/how/when of caring for RM – through it all my Boy was a Rock Star in the making. 

The Boy hasn’t been many places.  Early on, RM’s health kept us away from public playscapes, parks and restaurants.  We stayed home all the time.  We made the best of it.  For much of the time SGM was deployed and I was simply trying to keep us ALIVE – a trip to Chuck E. Cheese was NOT happening.  If we had a box of mac’n’cheese left in the cupboard we were doing good.  I didn’t have respite care for myself or for The Boy so while I spent 24/7 caring for RM and her feeding tube and changing her out of puke every time I turned around – there just wasn’t much left but love. 

Love.

That’s it.  Snuggles at night when I pulled him into bed with me, just the two of us in the quiet.  A mother wrapping her love tightly around her baby boy.  A kiss and an ‘I love you, SnuggleBear’ every time I passed by him, sometimes a dozen an hour.  That’s all I had left to give.

It was enough for my Rock Star.

He was STILL A HAPPY KID.  His beaming smile captivated people’s attention.  He grew fiercely protective of his baby sister AND his Mama.  He helped with any little thing he could.  He never complained that we didn’t go places and he never asked for more than he knew I could give at any time.  He cherished what I had to offer and in kind, he offered all he had to RM.  He would read to her and let her play near him while touching all of his stuff.  He didn’t seem to mind that she would chew all of the tires off of his prized matchbox cars.  Instead, he would cheer her on with every new accomplishment.  He would spend hours teaching her – patiently.  The Boy single-handedly taught his baby sister how to count to Ten.  He would sing to her – Dear God – he would sing so sweetly to her.

This Boy of mine – this amazing creation sent to me was SAVING ME.  His song was lifting me up and his love was speaking to me.  My Rock Star was showing me the way.

Now about to turn eight, he continues to be the most loving big brother to RM who is turning five.  He has overcome many of his own sensory processing issues.  But something even more spectacular is happening.  The Boy is becoming increasingly more sure of himself and his place in this world – at the ripe old age of eight.  He is expressing thoughts outside of his role in this house and having FUN finding his own interests.  He is stepping out of his shell and engaging in a life that more resembles what it should be – giggles, being a goofball, running with ‘the guys’ and having his first crush on a cutie down the street from us. 

So where’s that next new, magical Rock Star?

Right here.

He’s putting himself out there and making magic.  And he’s updated his hair to prove it.

The Boy, June 2011

[I Love Rock ‘n’ Roll by Joan Jett]


My Daddy is a Soldier

This Father’s Day, I honor the soldiers – Daddies who are worlds away from their babies today – longing for little arms wrapped around their neck, squeezy hugs and butterfly kisses.  SGM has never been home on Father’s Day to be celebrated by his kids – but no Daddy has ever been loved so fiercely. 

The following letter was written by SGM 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. [It was originally shared here.]

Thank you, SGM. Your children are so blessed by your love, strength and courage to fight for them on ANY front.

 

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


The Situation Room

The news of the death of Osama bin Laden is welcomed here.  As my Sergeant Major and I prepared to turn in for some Zz’s last night, we checked the news channel to get a weather report for today.  We were stunned.

I did not lose a loved one on September 11th, 2001 – though my heart was broken and I would be changed forever with the loss of each and every soul that day.

We all lost so much that stunning September morning.

I lost entire years of time spent with my husband.  I lost sleep worrying for his safety and the safety of our nation – the safety of each of my neighbors and the future my children would face. My children lost so much that day as well.  They missed their father tucking them into bed each night and missed his laughter and his Turbo Hugs.  Daddy missed his son’s giggles and spent many lonely nights sleeping in a tent thousands of miles away while his baby girl slept in a hospital bed.  We all missed each other so much it physically hurt.

While my husband served in Afghanistan against the War on Terror, I spent months in the Situation Room carefully gathering data, assessing threat levels and calculating acceptable loss.  I qualified available assets and carefully exploited what I needed to and when.  No, I am not The Commander in Chief of The United States Armed Forces and my Situation Room may not be located on Pennsylvania Avenue – but I have had my own operations to conduct in my own Situation Room here in Stim City.

With each mission Daddy went on, the Situation Room here was busy, too.  Where SOPs (Standard Operating Procedures) were carefully followed to the letter on such missions as traveling hazardous resupply routes to acquire necessary equipment and sustenance.  Taking a toddler and his baby sister with tubes and pumps attached to the grocery store without incident.  The coordination of the simplest of things such as attending a preschool concert were impossible and quickly eliminated and categorized as ‘acceptable losses’ in the bigger picture of operations.  So were such things as pedicures and Girls’ Night Out.

Because of the evil that exists in this world, the work of our soldiers is never truly done.  However, we celebrate a victory today – not of the death of a miserable monster – but of the renewal of our faith that America indeed stands for life, liberty and the pursuit of happiness.  Our freedom is never free, but damn are we blessed that our soldiers do what they do.

To ALL those who serve our country’s military and to the partners, grandparents, family and friends back home who run and assist in The Situation Room – God Bless YOU.

God Bless America.

 

[Ed note: May 1, 2012. Please watch the video and sign the petition to give military families with children on the autism spectrum the critical treatments currently being denied to our Wounded Warriors and retirees. Thank you.]

 


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