Tag Archives: WAAD

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 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!]


Still Workin’ for the Man

[Workin’ for a Livin’ by Huey Lewis and the News]

How do you look a battle-weary soldier in the eyes and say: 

I know you are exhausted, My Love.  I know it has been a long road through hell and back again – 

More than once.  

Yes.  25 years IS a long time. 

But you cannot retire just yet, My Love.  

Yes.  You will have to deploy again – go through hell – again.

 I’m sorry, My Love.

 ◊ 

On the topic of our healthcare crisis in this country, there are so many arguments to be heard.  So much talk about the costs; the political drama of partisan strategies and taxes, who should pay what and how should that money be spent. 

When I think of the healthcare crisis in this country, so many faces come to mind. 

I see the troubled face of a retired nurse of more than 50 years service in the healthcare industry.  I have listened as she shared her experience in a rehab home recovering from a broken leg.  “Nursing isn’t what it used to be.”

I see the tear-soaked face of a mother who has sat in a clinic waiting room for more than 2 hours with her screaming infant.  With no place else to go, she prays her name is called before she has to leave because she cannot miss another shift at work.

I see the embarrassment on the leathery face of a day-laborer asking the pharmacist for just a few pills of his monthly medication, because that is all he can afford.

I see my daughter’s chubby-cheeked smile.  I am terrified. 

 Do you see their faces?

 Do you see your own?  Or that of your child? 

And there are so many more to see.  Folks who have beaten cancer, and those who have not.  The unemployed ‘wealthy’ who find themselves homeless because cancer was the last thing they could afford.  The working poor in this country that are served eviction notices because a week of the flu cost them so much more than a bottle of aspirin. 

I also see the face of a brave and selfless soldier. 

Whether the face of a Wounded Warrior who cannot get the care he or she requires and deserves, or a father of two who has served his country for 25 years and cannot secure his own family’s future healthcare.  It IS a crisis.

1 in 88 active duty military dependent children live with autism.   

Only 10% of those children are receiving the autism therapies and care they require.

10%.

Though not an easy task, all active duty dependents are eligible  to apply for autism benefits through the military’s TRICARE insurance and ECHO program, and therefore could theoretically obtain it.  The access is sketchy at best for many of these families.  With changes of duty station, cycling deployments, and inconsistent providers, even the most diligent parents fail to get what their child with autism so desperately needs.

Now hear this – the moment the child’s soldier retires – that’s it.  Done. 

No more ECHO.  No more autism coverage. 

Retirees – WHO HAVE SERVED OUR COUNTRY FOR 20 YEARS – are not eligible to access the autism therapies that TRICARE provides active duty dependents.

My husband is 43. 

Our daughter is 4. 

We are ONE YEAR into her autism diagnosis.  My brave and mighty soldier is burdened with the weight of knowing that he must choose insurance coverage his baby girl needs over retirement he so richly deserves.

25 years of service.

3 wars.

Countless medals and citations.

It isn’t just autism, either.

The ECHO special needs coverage program is what we have relied on so many times throughout RM’s first years with 4q deletion syndrome.  It covers durable medical equipment, respite care, supplies, formulas, and home nursing care. 

THE MOMENT A SOLDIER WITH A SPECIAL NEEDS CHILD RETIRES – ALL OF THE ADDITIONAL BENEFITS ARE GONE. 

Let’s do some math and then I’ll let you go.

Most career, active duty military members joined when they were just babies themselves, between 18 and 21 years old.  Let’s say a soldier joins at 18 and has a child when he is 25.  That child is diagnosed with autism at 3 years old when the soldier is 28.  The soldier is eligible (and often forced) to retire at 38, when his child is 13.  That’s it.  No more autism coverage.

Did I mention that this soldier retired at the rank of an E-6 Staff Sergeant and earns a retirement check of just $1,815. per month before taxes???

I love you, Honey.  I know you are tired.

I know.

I’m sorry.

 ♦

If you haven’t done so, 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.

Love,

Rachel

 


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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