Tag Archives: military

May 28, 2012

Open Letter to Armed Services Committee Members on Memorial Day

Happy Memorial Day Weekend, Ladies and Gentlemen of the Armed Services Committee Offices.

My name is Rachel Kenyon. I am a proud and battle-tested Army wife and mom of two beautiful babes, one with autism.

Currently, TRICARE military healthcare provides less than half the recommended treatments for autism, and only to children of active duty service members.

Service members who retire after more than twenty years and Wounded Warriors forced to medically retire are stripped of what little treatment TRICARE allows via the Extended Care Health Option (ECHO).

On Thursday, May 17, 2012, Congressman John Larson took to the House floor armed with embarrassingly large photos of our little family and made the case for Caring for Military Kids with Autism Act to be included as an amendment to the FY2013 NDAA. It worked, because for Mr. Larson, this had become personal. It worked because Rep. Tom Rooney had the courage to walk up to Chairman Buck McKeon and tell him it was personal. Mr. Rooney has two nephews with autism. Mr. McKeon did the right thing, because now he understood, it was personal. The amendment passed as part of the NDAA in the House.

Senator Gillibrand attempted this past week to do the same in the Senate Armed Services Committee markup session. The amendment was rejected.

I contact you today because this fight is so very personal for so many of us serving our country each day. Not only do I want my husband to feel that his more than 25 years of service warrant the medical care our daughter with autism needs, but I want my daughter to have the security of being able to access the tools that can give her a richer, more meaningful life.

It’s personal because I now hold 23,000 other children in my heart, and more than that many parents who serve our country. I love them as I love my own. I want them to feel proud of their country’s service to them in return. I want them to sleep at night, knowing that though autism may have knocked on their door, they can live their lives to the fullest with the care they need and deserve. It’s personal.

I know once you read the petition comments from your constituents, both military and civilian, you all will choose to do the right thing. To take this fight personally. To share with your fellow staffers and your Senators and Representatives that our families are proud. That our children are worthy. That if just one military child was denied the cancer treatments he or she needed, we would not be wasting time with emails and petitions. A true American who hears that 23,000 military children are being denied the medical standard of care for autism takes that personally. Well, for real American patriots, it is so very personal.

I appreciate your time and I wish you all a fun, relaxing Memorial Weekend in remembrance of those who have made the ultimate sacrifice.

Our little family will be spending another weekend living with autism in our house and struggling to understand why we have to fight this battle, too.

Best,

Mrs. Rachel E. Kenyon

Wife to Command Sergeant Major William W. Kenyon

Mother of two beautiful babes – one with autism.

http://www.change.org/petitions/congress-make-recommended-autism-treatment-available-to-all-military-children

1 comment | tags: autism, caring for military kids with autism act, cmkaa, HASC, military, SASC, TRICARE | posted in Uncategorized

May 1, 2012

The Hangover 2012

By Rachel Kenyon

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.

[Ed note: I wrote this last year, 2011, after one hell of a party. This year was even more over-the-top. Our little family participated in lighting the USS Intrepid, The Empire State Building and ringing The Opening Bell at the New York Stock Exchange in honor of World Autism Awareness Day. I also schlepped up to the state capitol with my rugrats to spread some awareness there, too. I contacted the House Armed Service Committee Members no less than a dozen times each, using facebook, Twitter and by phone, sending more than one thousand tweets in the month of April to spread the word. I created a video and a petition to reach out for more support for our military families living with autism. Oh, and we did actually call the cops twice - once for a trip to the ER with RM (she's fine) and another to catch a hit-and-run suspect (for reals). And now, I will take a few ibuprofen and a nap. Hooah. Thank you to everyone who participated and continues to support CMKAA.]

3 comments | tags: autism, autism awareness, autism awareness day, cmkaa, hr 2288, light it up blue, military, month of the military child, TRICARE | posted in Uncategorized

April 26, 2012

Wounded Warriors Denied Autism Treatments for Their Children

By Rachel Kenyon

To help win this battle,

sign the petition at Change.org.

Leave a comment | tags: autism, caring for military kids with autism act, cmkaa, ECHO, hr 2288, military, TRICARE | posted in Uncategorized

April 5, 2012

Military Families Find HOPE Aboard USS Intrepid

By Rachel Kenyon

(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.

3 comments | tags: 1 in 88, autism, autism awareness, autism awareness day, caring for military kids with autism act, cmkaa, ECHO, hr 2288, military, TRICARE, USS Intrepid, WAAD | posted in Uncategorized

March 26, 2012

April is Autism Awareness Month AND Month of the Military Child

By Rachel Kenyon

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

1 comment | tags: 1 in 88, autism, autism awareness, autism awareness day, caring for military kids with autism act, cmkaa, ECHO, hr 2288, military, month of the military child, TRICARE | posted in Uncategorized

March 8, 2012

Surprise! We’re Polygamists!

By Rachel Kenyon

Last year on this day, I wished my husband a Happy 8th Anniversary.

Today I seek to do the same, only I’ve decided to unleash our skeletons from the closet and announce to all of you that we are Polygamists.

Yes. You read that correctly.

No. It is not another woman. Or another man.

Nine years ago today, in a beautifully rustic stone forge built in 1757, in front of just twenty-two people and an Army Chaplain, I married the SGM and The Military.

Polygamy wasn’t previously on my radar. I grew up Catholic, so it’s kind of a no-no. But it was pretty clear that this was a packaged deal and I wasn’t getting the SGM without also making vows to The Military.

While the first several years of marriage tested SGM and me to our very core with deployments and unexpected parenthood and less-expected feeding tubes and heart surgery and autism, I don’t think The Military struggled with these life events as much as we did.

The Military did come with a dowry that sounded pretty great on paper. Steady income, medical and dental benefits and life insurance. Then there were the perks such as travel, military galas and ceremonies, and all the ibuprofen a girl could ever want or need. In reality though, I am not the one who gets to travel and I can bet the SGM would pick better places to visit that do not involve terrorists. Our Battalion doesn’t do galas, so I don’t get to dress up like a goddess once a year and get tipsy at an open bar. Lastly, I pay for my ibuprofen out-of-pocket because I am a dependent not living near a Military Treatment Facility.

But I keep my vows to The Military despite the fraudulent dowry. I don’t argue when SGM is called away to war. I man the homefront when he is gone, whether for two days or two hundred. I fix leaky faucets and take the air conditioners out of the windows in the fall and lug them up to the attic. I bite my tongue on the telephone as much as possible so that he isn’t burdened by stressors at home such as I.E.P.s when his stressors at work are I.E.D.s.

Sometimes in polygamy, you are just the odd woman out. After nine years, I am confident The Military has had a lot more say in how SGM spends his time but I am not jealous or resentful of The Military. Remember, I signed up for this.

However, I do have a bone to pick with The Military on our anniversary today, and flowers and a card are not going to smooth things over this time. I want OUR children to be better cared for whether one of them needs open-heart surgery or autism therapies. Step up, The Military. SGM and I have upheld our vows. It is time for The Military to take a turn and uphold its vows to care for us in good times and bad and stop the segregation of medically necessary treatments for autism into ECHO where they are no longer available to us when SGM retires. C’mon, The Military – Remove that arbitrary dollar cap on autism care that limits therapies to less than half of what is recommended by the American Academy of Pediatrics, the National Academy of Sciences, and the Navy and Army Surgeons General.

I want to grow old with both my SGM and The Military. I want our service and sacrifices throughout our marriage to mean something more than idle promises to care for one another. I want The Military to continue to care for our children after retirement as it claims to do. Because even if retirement was the equivalent to divorce, The Military would still owe child support. It was all part of the agreement we entered into when we forged this relationship.

And really, SGM doesn’t get to pick and choose which of his children he cares for, why should The Military?

We’ve got some things to work out, The Military. Like all marriages, there have been some major bumps on this ride but I wouldn’t trade it for the world. Let’s make this right for all of our kids, ok?

Happy Anniversary, SGM and The Military.

I love you both.

[One in eighty-eight military dependent children lives with autism and current military insurance does not provide adequate care. Dependents of retirees, even those of Wounded Warriors, receive NO autism benefits. Please show your support for HR2288 - Caring for Military Kids with Autism Act (CMKAA) at http://cmkaa.org. There are three easy ways you can choose one-click support of this critical legislation.]