Tag Archives: autism awareness day

Military Families Find HOPE Aboard USS Intrepid

(Photo courtesy of Autism Speaks and Photo-NYC.com)

New York – On Saturday, March 31, Autism Speaks honored military families living with autism aboard the USS Intrepid Sea, Air and Space Museum.  My head is still spinning and I am still processing the HOPE I stumbled upon that day.  I have so much to tell you and I want to share this HOPE with you.

Before I go any further, if you don’t know me, please read about my journey as a Late Bloomer.  I feel it is so important that people understand that I have done nothing extraordinary in the last two years.  I simply spoke up and reached out to people who can help – people who should help – and I have had high expectations of them.  I also learned “No” is an unacceptable answer, especially from leaders in government that we elect and contribute to their salaries.  I have learned that being positive and confident about the right thing to do is contagious.  Even politicians want better expected of them.  Anger and bitterness do not get the job done.  More importantly than anything else, I have learned to listen, too.  In reciprocal communication with legislators, other military families, military leadership and fellow members of the autism community, I have become a better person and learned so much about working as a team.  It has allowed me to participate in opportunities that otherwise would have been far out of my reach as that Late Bloomer.

Aboard Intrepid on Saturday, I had the opportunity to speak with Mr. Michael Strautmanis, Deputy Assistant to President Obama and father to an autistic child.  He was sincere and he was listening.  I am fairly certain that no less than four times I told him his presence there that day meant HOPE to our military families.  I am pretty sure I was close to crossing a line when I winked at him saying, “Now you go back to DC, Sir, and tell your boss we need this.”

Handing Mr. Strautmanis a letter on behalf of military families. (Photo courtesy of Autism Speaks and Photo-NYC.com)

I had several more conversations with Congressman John Larson [D-CT], Sponsor of HR.2288, as well as Bob and Suzanne Wright, cofounders of Autism Speaks.  These individuals are serious, people.  This is a no-more-messing-around situation.  The new CDC numbers of 1:88 are not new to the military but they are certainly helping to wake everyone else up.  The unique struggles our military families face, admittedly, are so very complicated.  It isn’t until recently that our stories have been brought to light and truly understood.  It’s hard enough for us to keep up with the acronyms, imagine these civilians getting a crash course in military lingo while also hearing about the seven circles of hell we navigate through just to get to ECHO.  We must keep sharing our stories and spelling out those acronyms.

 

From left to right: President of Autism Speaks Mark Roithmayr, Deputy Assistant to President Obama Michael Strautmanis, Military Spouse Rachel Kenyon, Congressman John Larson [D-CT], retired NASA Astronaut Jeffrey Alan Hoffman, Cofounders of Autism Speaks Bob and Suzanne Wright, and Intrepid Museum President Susan Marenoff-Zausner.

(Photo courtesy of Autism Speaks and Photo-NYC.com)

The presentation aboard Intrepid for military families was emceed by Bob Woodruff of ABC News, a hearty supporter of veterans and Wounded Warriors.  Mr. Strautmanis, Congressman Larson and Bob and Suzanne Wright spoke of the undeniable responsibility our nation has to care for our troops and their families.  Most notably, Mr. Wright spoke of personally calling ECHO to get answers.  He spoke of the frustration when administration at ECHO told him they were unaware of families having trouble accessing autism care.  This man had taken the time to walk in my shoes.  That got my attention and earned my respect.  Marine spouse and advocate Karen Driscoll shared a powerful video highlighting the personal toll on our military families who cannot access treatments.  She also urged leaders to take this important message back with them to Washington, D.C., and implored them to take action.  The heartbreak our military families live when denied the treatments our children with autism need and deserve was exuded by each speaker.

What I heard this day was a clear and united message to our military families.  The cavalry is mounting up and on its way.  But we must keep communicating.  We must keep ourselves visible and hopeful.  We must remain positive.  Anger will get us nowhere.  It has to be a team effort and victory will require teaming up with both sides of the political aisle and every side of the autism debate.  It is not vaccine versus genetics here.  It is not research versus outreach.  With 1:88 there is room enough for everyone to sit at the table and work together.

For military families, right now is the time to act.  We have the federal legislation in place and we have the momentum to get it passed.  But we need unity and a collective voice speaking up and being heard or else we will fail this mission entirely.  HR.2288 – Caring for Military Kids with Autism Act makes the recommended amount of medically prescribed autism treatments available to all military families.  It is the help we need right now.  We cannot wait any longer and we cannot wait for someone else to speak up on our behalf.  We need to own it.  We need to fix it.

I leave you with this well-known story:

There was a man that lived by the river.  He heard a radio report that the river was going to rush up and flood the town.  All the residents should evacuate their homes.  But the man said, “I’m religious.  I pray.  God loves me.  God will save me.”  The waters rose up.  A guy in a row boat came along and he shouted, “Hey, hey you!  You in there.  The town is flooding.  Let me take you to safety.”  But the man shouted back, “I’m religious.  I pray.  God loves me.  God will save me.”  A helicopter was hovering overhead.  A  guy with a megaphone shouted, “Hey you, you down there.  The town is flooding.  Let me drop this ladder and I’ll take you to safety.”  But the man shouted back that he was religious, that he prayed, that God loved him and that God will take him to safety.  Well, the man drowned.  Standing at the gates of St. Peter, he demanded an audience with God.  “Lord,” he said, “I’m a religious man, I pray.  I thought you loved me.  Why did this happen?”  God said, “I sent you a radio report, a helicopter, and a guy in a rowboat.  What the hell are you doing here?”

Intrepid is no rowboat, but you get the idea.

Get on it.  Get involved.  Contact your legislator NOW.  Before we all miss the boat.

 

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April is Autism Awareness Month AND Month of the Military Child

I’m over at the Autism Speaks Official Blog today talking about the complex issues facing access to autism care for military families and why HR2288 – Caring for Military Kids with Autism Act is so critical.  April is coming and there are so many ways to get involved in spreading awareness whether blue lights on your house or simply starting a conversation with someone and sharing what autism means for you and your family. 

“April is not only Autism Awareness Month, it’s the Month of the Military Child.  As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.  I apologize in advance for the absurd amount of acronyms, but bear with me as I try my very best to demystify the whole autism-military thing.”

For the entire article, please find me on Autism Speaks HERE.

And thank you for being a part of this journey with me!

Rachel


The Hangover

The last guests have gone.  Empty bottles litter the house and the yard is a wonderland of crisp white toilet paper dancing in the wind.  My head is pounding and my stomach has left the building – more than once.  The cat is missing and I have no idea how many days have passed since I was last conscious.

I have never had such a hangover.

I’m just so glad it’s over.

I grab the bottle of ibuprofen, pop a few like candy and chase them with a scalding hot cup of coffee sugared beyond recognition.  I schlep to the loo, reluctantly turn to the mirror to look myself in the eye and make yet another empty promise to myself and my body that I will never abuse myself like this again.

It wasn’t the worst event ever – just insanely over the top.  Too much going on at once, kids running wild and the grown ups could barely hear each other over the noise of general confusion.

There were a few fist fights that broke out during the course of the party, but nothing serious and as far as I can recall – no one had to be hospitalized.  Thank God.

I don’t think the cops ever showed up, but then again I wouldn’t likely remember if they did unless I was using my one phone call from jail to have more ibuprofen delivered to my cell.  Do they do that?

Anyways, it looks like today will be a gorgeous day outside so I had better pull myself back together and lose this hangover.  The first full spring day that our little family can spend together enjoying the outdoors and some sunshine.

Don’t worry if you missed this party – you’re invited to the one next year.  It’s called Autism Awareness Month and it’s one hell of a time.

 


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.

 


April Showers: Autism and Military Awareness Abound

[Would I Lie to You by Eurythmics]

 

April is the Month of the Military Child

AND

Autism Awareness Month

 

 1 in 88 military kids have autism.

 

So it seems very appropriate that these two awareness campaigns would coincide.

 

[Editor’s note: Before I continue with my speech on why these issues are so important – If you have not done so – PLEASE – show your support for our military families by leaving a comment on my letter to The President.  Scroll down to the bottom and ‘Leave A Reply’. THANK YOU.] 

§

What’s the big deal about autism anyways?

What does that matter to me?

Well, here’s a primer:

  • 1 in 110 US kids and 1 in 88 US military kids have autism NOW.
  • If you were on the front lines in Afghanistan or perhaps dropped into Libya tomorrow, do YOU want the guy backing you up worried about his kid back home with autism who isn’t getting the services or support he or she needs?
  • If you cannot accept responsibilty for understanding, accepting and supporting these kids and families – then you ultimately are missing out on knowing some of the most incredibly brilliant and loving and unique individuals.  You also miss out on the most amazing things you could learn from being friends with one of these awesome Rock Stars.  Seriously.  Your loss.  Not to mention, their parents are some of the most fiercely passionate and articulate individuals you will ever meet. 
  • If you do not pass awareness down to your own children then your kids will miss out on experiencing what it’s REALLY like to run with the cool crowd. 
  • And last I checked, kids grow up and get older. 
  • If we do not invest in the support these kids need NOW to help them grow up and contribute meaningfully to society – you and I will pay BILLIONS more to care for them down the road. That was BILLIONS with a ‘B’. 
  • The numbers just don’t lie.  Every 20 minutes a newbie joins the autism club, and let me tell you – you are going to become ‘aware’ eventually. 
  • Aspergerians will eventually corner the technology market and you just might be asking one of them for a job someday – or ironically, asking them for help with your social networking tools. 
  • Not to be flippant – but really? Our kids with autism are someday going to rule the world with their creative and mathimatical brilliance, and their lack of getting caught up in your BS. 

Get on board and enjoy the ride instead of missing the train and paying the price.

 LIGHT IT UP BLUE and spread the word, My Friends.

[Editor’s note: I will be highlighting a number of military-specific topics in relation to autisn during the month of April, so please keep an eye out!]


Warrior Mamas Unite! Uh-oh, Parents Magazine!

Hello, Parents Magazine!!!…

…April!!!

Like… Autism Awareness Month!!!

Have you not noticed?!?!

****

An amazing Mama Warrior noticed in her new April issue of Parents Magazine, that there was no mention of autism, or Autism Awareness Month. 

No in-depth articles, early signs of -, living with -, etc.

So she shared that fact with the gang of us Warrior Mamas who decided it was worthy of a smack-down…

Check it out… THIS is what the magazine responded with:

“Hello everyone! We appreciate your feedback and the reminder of the importance of events like Autism Awareness Month. Our April issue does have an item in the Kids Health section about a bed tent for kids with autism and other special needs, and we have focused on autism-related issues several times over the past year in the magazine. In addition, in the weeks leading up to and during April, we will be publishing at least two online-only pieces about parenting children with autism. We take very seriously the importance of raising awareness about autism. We understand that there is always room to improve and are grateful for your suggestions. Thank you again for your feedback.”

 

And here is the “item” and singular reference to autism in their April 2011 issue:

****

So, as you can see… this is not acceptable.

Tell Parents Magazine what YOU think about their lack of coverage regarding Autism Awareness Month. 

Email: mailbag@parents.com

Help them to see that it affects ALL of us.

 

1 in 110.

1 in 88 military kids.

Not less… just different… and not to be ignored.

 

PS  If you haven’t yet left a comment for The President (of the United States) at Jess’ post… GET ON IT.

 

 

 

****


I’ll Send You the Blue Bulb, Mr. President…

Going out on a limb here… 

I think I can convince a few folks to Light it Up Blue  for World Autism Awareness Day, this April 2nd.

Perhaps with YOUR HELP we can convince President Obama to change his porchlight to blue, too.

~~~~

My Dear Friend, Jess, wrote a letter to President Obama  

asking him to do just that.

Will YOU join in, too?

Please! PLEASE!! It only takes a moment. 

Drop by her post here:

>> Leave a comment for The President<<

That’s it! That’s ALL you need to do today to make a REAL difference.

~~~~

My own comment to The President:

“This is what so many of us HOPE for… the conversations… the compassion… the beacon for change.

A heartfelt ‘thank you’ to Jess. She so eloquently speaks the painful truth, and inspires all of us to keep moving forward for our kids.

Please, Mr. President… Light it up Blue for MY daughter… and MY nephew… and ALL of those who LIVE with autism, DOCTOR someone with autism, TEACH someone with autism, and LOVE someone with autism.

Light it up Blue for the 1 in 88 MILITARY children who live with autism… more than 12,000 children of active duty soldiers who could benefit from that one, blue, shining light, Sir.

Light it up Blue because Jess is right – it is ONE thing you CAN DO in a day.

Thank you, Sir. God Bless You, and God Bless America.”

~~~~

I’ll even send you the bulb, Mr. President.

~~~~

Don’t be left out…  On the evenings of April 1 and 2, 2011, prominent buildings across North America and the world — including the Empire State Building in New York City and the CN Tower in Toronto, Canada — will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2.

You can show YOUR support in YOUR community by changing your porchlight to BLUE on April 1st and 2nd.  Let’s make this World Autism Awareness Day one of the brightest yet. 

 

*Editor’s note: According to a 2005 DOD publication, the actual estimated number of active duty dependent children with autism is more than 13,000 – not 12,000.


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