Come May Flowers

 

April is nearing it’s end. The showers of awareness will hopefully bring new blossoms of hope and change. Because April is Autism Awareness Month and the Month of the Military Child, I am reposting the full text of my article that was originally published April 5 on the My Army Reserve Warrior Citizens Blog.

It was my first official April as a fully licensed Autism Awareness pitch woman.  I started with gusto and am now feeling deflated with a case of laryngitis from shouting from the rooftops that my kid and others with autism are IMPORTANT and SPECIAL and deserve to be heard whether they can speak for themselves or not.

I am looking forward to May as a time to renew and regroup – again.  To take just a moment and breathe.  To watch the flowers bloom – and know that I planted a fruitful seed or two that will make life just a little easier for my baby girl and others like her.

I hear the crackling of the line as I picture a string seven-thousand-miles long, reaching far across the world.  On the other end, a tattered paper cup held to my best friend’s ear. 

“Honey, our baby has autism.”

After great pause, my soldier replies — “Tell me what this means.  Please tell me she isn’t going to disappear down the deep, dark hole of autism.” 

We knew what autism was — we just didn’t see it coming.  That phone call to my husband in Afghanistan would mark the beginning of a world war to get our daughter the help she needed. 

“RM” (her alias) was born with 4q Deletion Syndrome resulting in multiple disabilities.  Her first three years were filled with surgeries, durable medical equipment, prayers of desperation and cheers for every ounce of weight she gained and every inch she grew. 

I can tell you — autism is so much more terrifying than open-heart surgery or feeding tubes.  Autism affects EVERYTHING and there is no surgeon or medical device that makes it go away.  

Autism is a complex neurodevelopmental disability.  As a spectrum disorder, challenges vary greatly from one person to another.  It primarily affects communication and social abilities.  Severe sensitivity to noise, lighting, changes in routine are prominent.  A child with autism may have tremendous difficulty with fine motor skills — holding a pencil, toileting and other self-help skills such as buttoning a shirt are extremely challenging.  Feeding difficulties, digestive disorders and a limited variety of food preference also affect the medical health of a child with autism.  My baby girl LOVES her cheese. 

While my husband served his second tour in Afghanistan, I was wildly researching what to do next.  We are an Active Guard Reserve family living within a civilian community in Connecticut.  Our school district has a deplorable reputation; so I quickly hired the best special education attorney in the state at a cost of thousands of dollars.  A luxury most families do not haveSee HERE to learn how my husband got involved. 

I read special education laws.  I studied everything I could about treatments and therapies.  I started looking into TRICARE and what was available through insurance.  I had applied to our state’s Department of Developmental Services when RM was born and found we were still on the wait-list for assistance.  Medicaid gave me the run-around for nearly a year.  I was appalled.  And enraged.  

I wanted to know more.  According to a Department of Defense (DoD) report, one in eighty-eight active duty dependent military children lives with autism.  The epidemic is undeniable.  Of those diagnosed, less than 10% are receiving the appropriate therapies they need to secure a hopeful future.  Frequent changes of duty station, cycling deployments and disruption in family life are all overwhelming obstacles to accessing appropriate therapies.  And every time a military family moves, they drop back down to the bottom of the food chain for services. 

I started a dialogue with my legislators.  The numbers did the talking for me.  Jaws dropped and silence filled the room — 1 in 88.  Our military children who send their mommies and daddies off to war are being left behind — without the treatments PROVEN to help them.  

It is fourteen months later; we finally have access to TRICARE’s ECHO autism services and our school district has conceded to placing our daughter in an appropriate out-of-district program.  Victory. 

Along the way I learned many valuable lessons and met the most incredible people doing great things for our children.  I have renewed faith in our legislators to do the right thing and make TRICARE cover autism benefits as part of standard care for active duty AND retired dependents.  I feel empowered by the knowledge I have gained in this process and I look forward to passing it along to those beginning this journey themselves.   

April is the Month of the Military Child and Autism Awareness Month — we will continue to take every opportunity to share our story with anyone willing to listen.  We will fight back the exhaustion, frustration and tears; so that in the absence of our soldiers, our families will find the courage to keep moving forward.  We will continue to strive for a soft place to land for our kids out in the world — where they may find acceptance, compassion and a future filled with peace.

 

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

5 responses to “Come May Flowers

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