Author Archives: Rachel Kenyon

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.

U.S.

Less than a week after the tragedy in Newtown, Conn., conferees from the House and Senate met to discuss this year’s defense bill. Sadly, at least some of those conferees seem to have missed one of the larger points related to that horror: the need for families, in this case military families, to have access to the needed behavioral health treatments to treat their children with disabilities.

Let me be emphatic to say I’m not linking Newtown to children with disabilities. But it has reminded us of the importance of mental-health care for all.

In the middle of a national debate on appropriate mental health (of which behavioral-health treatments for our military kids is a component), the conference committee considering the 2013 National Defense Authorization Act found a way to overlook the votes the House and Senate had previously taken to support our military children.

In the House version…

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Contact HASC & SASC Today!

PLEASE TAKE ACTION AND SHARE! IT IS SO EASY! OUR MILITARY FAMILIES NEED YOU!

Caring for Military Kids with Autism Act

ARMED SERVICES COMMITTEES

HOLD OUR FATE IN THEIR HANDS

OLYMPUS DIGITAL CAMERA

Friends,

I have personally contacted every office of every HASC and SASC Member to urge them to pass the NDAA on to President Obama with our autism legislation intact.  I am sharing their email addresses with you to do the same.  With one personal note, you can group email with one click and help change the world.  Just copy and paste the addresses into your email message and tell them – it’s personal.

 

HASC Chiefs of Staff and Legislative Directors:

Adam Howard <Adam.Howard@mail.house.gov>; Adrienne Elrod <Adrienne.Elrod@mail.house.gov>; Andrew Lattanner <Andrew.Lattanner@mail.house.gov>; Angela Kouters <Angela.Kouters@mail.house.gov>; Arthur Sidney <Arthur.Sidney@mail.house.gov>; Ashley Shillingsburg <Ashley.Shillingsburg@mail.house.gov>; Ben Schultz <Ben.Schultz@mail.house.gov>; Betsy Hawkings <Betsy.Hawkings@mail.house.gov>; Blair Milligan <Blair.Milligan@mail.house.gov>; Bobby Cornett <Bobby.Cornett@mail.house.gov>; Brad Gentile <Brad.Gentile@mail.house.gov>; Brad Katz <Brad.Katz@mail.house.gov>; Brian Crawford <Brian.Crawford@mail.house.gov>; Brooke Bennett <Brooke.Bennett@mail.house.gov>; Casey Street <Casey.Street@mail.house.gov>; Chic Dambach <Chic.Dambach@mail.house.gov>; Chris Austin <Chris.Austin@mail.house.gov>; Chris Connelly <Chris.Connelly@mail.house.gov>; Chris Kelley <Chris.Kelley@mail.house.gov>; Chris Perry <Chris.Perry@mail.house.gov>…

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Caring for Military Kids with Autism Act

action alert***ACTION ALERT*** IN ONE CLICK YOU CAN TELL THE CONFERENCE COMMITTEE MEMBERS TO SEND OUR BILL ON TO THE PRESIDENT FOR SIGNATURE!!!!! Use the link below at Autism Votes to send an email to each member of the House and Senate Armed Services Committee Members with one click!

WE NEED YOUR VOICE!

Thank you!


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…

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Caring for Military Kids with Autism Act

Friends,

I just received a call from Representatives John Larson and Mike Doyle, the original cosponsors of CMKAA. The Senate version passed this evening as part of the National Defense Authorization Act (NDAA)!!! The amendment was approved 66-29.
The measure must still clear ‘conference committee’ – that is where legislation that has passed on both sides of Congress is determined agreeable in its nature and language.
Once this is secured, and I am assured MANY Members of Congress are committed to seeing this through, The President will sign the NDAA into law with our amendment included.
THANK YOU to all who worked so hard to see this through, and especially the families who stood up to be heard. Bless us all.

Best,

Mrs. Rachel E. Kenyon

Wife to Command Sergeant Major William W. Kenyon, 1BN 102IN(MTN), CTARNG

Mother of two beautiful babes – one with autism.

Owner, author of Stimcity.org…

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Caring for Military Kids with Autism Act

From AutismVotes:

The Senate is about to vote on an amendment to the 2013 Defense bill that will greatly improve access to proven autism treatments for our military families. Sponsored by Senator Kirsten Gillibrand of New York, the amendment will assure all military families, regardless of their duty status, have access to behavioral therapies, such as applied behavior analysis (ABA), under the military healthcare program TRICARE. Existing ABA benefits are limited and often fall short of minimum standards and prescribed levels of care placing an undue financial strain on many military families. Further, military members also face the loss of those benefits when they leave active duty, even as a result of being wounded in action. Senator Gillibrand’s amendment would end those inequities and align TRICARE policy with best practices providing the medical care our military families have earned and deserve; a similar measure has already passed the House…

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Shoulder to Shoulder on Veterans Day

On Veterans Day, I take several moments throughout the day to give mental focus to what this day represents.  Not only what it means to me personally – as a military spouse, as a proud American, as a mother of a future generation – but I take great reflection in the details of what it means to be a veteran.  Of what it means for my husband to be a veteran.

On the grander scale of Veterans Day, there are celebrations, ceremonies and media attention spread across this great nation and around the world today.  Friends and family on facebook taking the time to say “Thank you” to the military families they know.  Many still confuse Veterans Day with Memorial Day, the former honoring all living veterans while the latter observes the ultimate sacrifice of those who died as a result of their service during conflict.

There are so many thoughts I have throughout these times of remembrance and honor.  From the perspective of a military spouse, the wife of a career infantry grunt, I am humbled by our military men and women.

First, I thank God for bringing my husband home to me every time his boots hit the ground, whether worlds away on a battlefield or an hour away responding to a hurricane.  I have only survived these missions on faith that God will provide and deliver my Love to me once again.

I cannot adequately express my gratitude for my husband’s service but I try to whenever possible, and my sincere hope is that I set the example for his children to do the same.  That they may grow up knowing that Daddy devoted his entire life to our country – for better or for worse – he has answered every call to duty.  I thank him for everything he has sacrificed, endured, witnessed and lost in his more than 26 years in the army.  I am proud of his accomplishments, his rise through the ranks, and his commitment to his fellow soldiers.

How many of us can say that we literally offered up years of our lives at a time for our fellow citizens?  How many of us have spent freezing cold, sleepless nights in a stone bunker covered in a week’s worth of dirt and mud, occasionally nodding off to the sounds of gunfire echoing through the mountains?

How many of us have carried a dead or dying coworker down a mountain in the rain?  Only to then be unable to attend the funeral because you are still worlds away climbing back up that mountain in the darkness?

How many of us have witnessed the most horrifying war has to offer?  How many of us take a moment to entertain what that even means?  Because I can tell you, hearing the details secondhand is impactful enough.  Imagine being the soldier who lived every second of war.  Imagine the smells that surround the soldier – death, burning garbage, human waste, generator fumes.  Imagine the sounds that seem to never stop – gunfire and mortars, helicopters, armored trucks, and the screaming.  Imagine how a soldier’s body feels at the end of a week-long mission out in the mountains of Afghanistan.  Broken.  Cold.  Mental exhaustion that most of us will never know.

I have only heard the details of war indirectly, but I lay shoulder to shoulder with the result.  With honor and duty, therein also lies the darkness of man.

So thank that veteran.  Tell him or her that you may never understand their sacrifices, but you are damn grateful they serve us all.

No matter our differences on war and politics, be sure to take the time to tell our veterans, “I stand shoulder to shoulder with you.”

Thank you, William.  These words will never be enough, but know that my heart picks up the slack.

Love,

Rachel


Everyday Fire Drill

Recently, SGM and I had a conversation more than six years in the making now.  So hard to believe.  We talked for a long time revisiting the path RM has brought us along since her grand arrival.

It was amazing to listen to daddy talk about the intricate details of our every day in those first years.  Sleep deprivation ranks at the top of the list of inconveniences.  What astounded me most throughout this conversation was that though I remember everything, I cannot recall much of the details on my own.  SGM talked about the “fire drill” we had mastered at 2am.  How eventually, we learned the sequencing of tiny gurgling sounds that preceded the projectile vomit.  If we were quick enough on our feet, clamping feed lines and haranguing huge plastic syringes, we could “vent” her belly of the gas pressure before the formula erupted out of her nose and mouth like a sour-smelling Mount Etna.  As he ran me through the drill, I realized I had completely blocked out that joy.

Good times.

Then there was the open-heart surgery at four months old.  Maybe because of the relief to have something that could be fixed, that seemed a good day.  I remember every detail of that clearly.  SGM and I had coffees and magazines and the whole private waiting room to ourselves.  Private waiting room.  You know, because your kid is having “real” surgery this time.  Why should you have to sit in the “regular” waiting room when your infant’s chest is being cracked open? Right?

The whole intensity of the situation seemed lost on me.  I just had faith that either way this was the journey and the results were predetermined.  No matter the outcome, we were blessed by this child for however long God lent her to us.  Right?  Because this was our everyday fire drill.

The PICU was new to us also.  We were in the Big Leagues apparently.  But again, the concept was lost on me that this meant I was to be more frazzled somehow.  We had already brought her through several other surgeries and procedures.  We had already sat in the “regular” recovery room with her enough to be familiar with the entire rotating staff there.  This was our everday fire drill.

I remember the chest drain sticking out of her, filled with blood, pouring into a bag at the foot of the bed.  She was still on a ventilator with wires monitoring every last thing imaginable.  But again, for some reason this was all ok.  We stayed with her for a little while, met the staff that would be watching over her, and we went home to our other two kids.  This was our everday fire drill.

What is so strange to me looking back now, is how overwhelmingly upset I was by comparison when RM came back to her room from her first surgery with her feeding tube.  The shock of seeing a hole cut into your child’s belly and a long, ugly tube coming out was too much for me.  How quickly I grew to love that tube for saving her life so many times.  This was our everday fire drill.

The journey has been long, often exhausting, and has left me on medication for anxiety disorder.  There are still so many unknowns about her future, both medically and developmentally.  This is our everyday fire drill.  But through it all, whether I remember every detail or just a snapshot of the tougher times, my baby girl has made this life brighter, more joyous, and more hopeful.

From StimCity’s facebook Wednesday: “Tonight I witnessed my baby girl in the awe of discovery as every curious expression crossed her beautiful face – the raised eyebrows, the wide eyes, the pure joy of experiencing something new and truly being in the moment – she learned the feeling of floating in water while taking a tubby. No, not earth shattering. Just so very cool to see her making such a connection.”

Oh, Baby, you bring me such joy.  Our everyday fire drill suits me just fine.

RM at 3yo smiling while recovering from Swine Flu. Sometimes, you just have to make the best of it – look where her feeding tube comes out of her jammies!


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