One-click YOUR kick-ass advocacy skills at CMKAA.org. Tell your US Rep to sign on to HR2288 Caring for Military Kids with Autism Act. Hooah.
Merry Christmas, Ryan Gosling
In case anyone else was wondering… You are not alone. Our fake tree is still up, complete with lights and ornaments, and our stockings are still hung by the chimney with care. And more than a few cobwebs.
Cheers,
Rachel
Paranormal
This afternoon we experienced a freak episode that was outside of normal. For us. But I could not shake the thought of how normal it actually felt.
RM came home off the van from school and we proceeded through the ritual of taking off our shoes, hanging up our coats, washing hands, putting on a new pull-up and getting a fresh cup of water and some crackers. It’s exactly the same routine every afternoon. But then we did something way out of the ordinary. We bundled up and put our sneakers back on and set out on this beautiful day and walked the quarter-mile up to The Boy’s elementary school to greet him and even hang at the playground for a spell.
You know like normal families do.
There were other moms there, too, congregating like moms do at the playground while kids play. None of the moms was 1:1 chasing their autistic kid. But here’s the thing – neither was I.
RM has come so far in the last year. She can maneuver the playground like a pro. Sure she has some limitations like any other 5-year-old. But they are height-specific like not reaching the zipline bar, they are no longer limitations of disability. She giggled. She watched her peers play. She smiled at them more than a few times. She gave chase to her brother. She was having a grand time.
So was I.
It was so - what is the word? Normal.
It wasn’t a perfect outing, we had a few hiccups like when RM saw her brother walking toward us (and home) so she panicked. She did flop on the ground, but she just needed the reassurance that the plan was still set and we really were going to the playground. She regrouped rather quickly and even said, “Sorry, Mom,” as the three of us took hands and kept on our way up to the schoolyard.
The other moms I chatted it up with I know well enough to know they each have had their own brand of normal. Not autism-normal, but they have had their own unique journeys with their own kids. And I appreciate that more than they will ever know. Because autism-friendly is as much about normal being different for all of us than it is about being the same.
But I sure loved the brand of normal we had this afternoon.
Late Bloomer
“I want to tell you that Rachel is incredibly special in so many ways, and yet I want you to know that she’s not special at all. I want you to know that there is nothing in her that is not in each and every single one of us, and that once it’s awakened, it can move mountains.” – DOAM.
I grew up the last of five kids who were eleven, nine, seven and five years older than me. From as far back as I can really remember my childhood they were already growing up and moving out. I always felt so far behind.
I was the awkwardly tall girl in elementary school. Tall and fat. Like uber-fat and had short hair and I liked to play football with the boys in my neighborhood. Can you see where this is going?
Anyways, my siblings gave me a lot to live up to. My oldest brother got like one answer wrong on the Math SATs and is literally one of the nicest human beings on the planet. My other brother, devastatingly handsome and the football star in high school, was the hilarious smart-ass who has always been much more brilliant than he has ever given himself credit for. My oldest sister has worked for MIT and other top slots as a business recruiter. My other sister graduated college with a dual degree and now works in state advocacy for persons with disabilities. There isn’t a dud in the bunch.
Then there’s me. I will let you in on a little secret. I didn’t graduate high school. There. It’s out.
Not for lack of trying. Well, actually that’s exactly why I didn’t graduate. I didn’t try. I didn’t like school back then. I found it so hard to pay attention in the classroom when my social anxiety and chubby sense of humor got the best of me. I wouldn’t say I was the class clown but I wasn’t exactly quiet and focused on academics. I wasn’t a popular kid but I suppose I was well-liked enough. I wasn’t a trouble-maker but I was not a saint. I didn’t drink, I have never tried drugs and I always had a decent part-time job throughout high school. SGM says it sounds like I was Switzerland – kind of a neutral entity. He pretty much nailed it.
The truth was that I didn’t want to try and then find out that I wasn’t in the same league as my siblings. So I rebelled a bit, found myself skipping classes and then manipulating the vice principal to avoid Saturday detention. (I had been teaching Catholic Catechism classes at my church which I really loved doing and convinced the administrator at school that I was a good kid already doing community service.)
My guidance counselor was kind of a joke. My senior year he tried to convince me to repeat because I was a half-credit shy of my English requirements. I told him plainly that I spoke the language fairly well having been born here and that my writing was sufficient enough to score him a beautiful letter of resignation if and when he grew a conscience and decided he had chosen the wrong profession. We did not part ways on good terms.
I decided instead to take the easy way out and spend two Saturday mornings pencilling in some bubbles on the GED. I passed, with Honors which I found rather absurd at the time that there even was such a classification.
The short version of the next several years is that I tried a couple of different colleges with really no success. My grades were iffy and I just wasn’t finding my place. But I worked and had some good jobs, some fun jobs, and I was independent. I just hadn’t really grown up yet.
Then I met my husband. It was a done deal from that first date. We were living together within two weeks and within a year we had a house, I was raising a teenage stepdaughter and expecting a baby of my own. By then it wasn’t a matter of when I was going to be grown up – I was a grown up.
But marriage and motherhood suited me. Military life worked okay for me, too. I could appreciate the time apart from my husband while he was away, because it made the time together more precious.
I went back to school again but this time I was motivated. I had a 4.0 first semester and at least nine years on every kid in my classes. I was accepted into the honor society Phi Theta Kappa. That’s Phi Theta, not Phi Beta Kappa – I was attending community college. But do you know what the President of the school told us at our induction? He said, “Do not ever believe that because you began here, that you have not earned the right to finish there.” He was speaking of Harvard and Yale. It was a life-changing moment for me. After believing for so many years that I was not in control of my life possibilities, that instead there was some sort of station that I had already cemented myself within, I now was free to do or become anything I wanted.
After I became pregnant with RM, and SGM was leaving for deployment number one to Afghanistan, I understandably took a break from school. It was good timing and would allow me to process the possibilities of what to pursue next. But RM’s arrival was a complicated one, and the road since has been bumpy. School would have to wait.
When my daughter was diagnosed with autism and I found out what little services are available to our military families, I was OUTRAGED. I mean, seriously? My husband gets shot at by Taliban and our kid gets left behind on the battlefield back at home? So. Not. Cool.
But who am I? What could I possibly do to change this cluster%#@&?
Well, actually, little ol’ me who never graduated high school and still has yet to earn a college degree, did do something about it. I spoke up.
That’s it.
I just spoke up. I said THIS. IS. WRONG. I said our military families deserve better for their children with autism.
There is not a class for this. Well, actually I am sure there is somewhere and it is probably very informative, but it is not a prerequisite to make the world a better place.
So, whether you’re a Late Bloomer like me, or you have advanced degrees in ass-kicking advocacy and legislative endeavors – do something. You are just that incredibly special in so many ways, and yet I want you to know that you’re not special at all.
[Click --> HERE <-- to support HR2288 by asking your Member of Congress to move this bill forward! Thank you!]
Military Families with Autism Finally Make it to ‘The Show’
[Click above image to see coverage of HR2288 on Andrea Mitchell Reports MSNBC]
TRICARE does not cover autism therapies. A separate arm of services called the Extended Care Health Option (ECHO) which is secondary to enrollment in the Exceptional Family Member Program (EFMP) does offer what amounts to an average of 11 hours of ABA therapy per week – far below the recommended 25-40 hours per week.
With HR2288 - the Caring for Military Kids with Autism Act, we are asking that TRICARE take autism therapies out of ECHO and place them as medically necessary as part of TRICARE standard – thus making these proven treatments available to all active duty and retiree dependents and removing the dollar cap on care.
ECHO is not available to retirees.
Wounded Warriors who are forced to retire due to injury or disease do not have access to autism services. According to TRICARE/DoD data, less than 10% of active duty families who do have access to ECHO are accessing autism treatments, yet none are receiving the recommended amount because of the dollar cap ($36,000 per year).
Also, families accessing autism therapies under ECHO are forced to choose between ECHO benefits in order to maximize autism therapies. For every dollar of ECHO benefits used towards other services, a dollar of ABA is essentially taken away. We seek to change that. Autism therapies should not have barriers to receive care, they should be equally accessible to the military family as would treatment for heart defects or a broken arm.
With the advocacy efforts of Autism Speaks, 29 states have now passed insurance reform to include autism therapies as medically necessary – we are seeking to do the same for our military families. This is not an issue of civilian versus military, it is an effort to level the playing field for ALL children with autism. This effort neither detracts from or argues the continued efforts to make proven treatments readily available to all. In fact, for TRICARE to step up with best-practice standard of care for autism treatment, they would be taking the opportunity to once again set the standard for medical care throughout the insurance industry.
Thank you to Peter Bell, Executive Vice President of Programs and Services for Autism Speaks, for his support! It is the hard work of everyone at Autism Speaks taking the charge to make this right, along with all of the tremendous work they do for families across the globe, that gives me hope.
And my absolute sincerest gratitude to Ms. Andrea Mitchell at MSNBC. Andrea was not only a gracious host, but she is personally committed to autism awareness for all of our families living with autism.
My thanks to Marvin, the lovely gentleman who drove me to and from the airport. And many thanks to the entire team at Andrea Mitchell Reports for welcoming me and my story and treating me with respect and kindness.
Cheers.
[Don't forget! You can write your US Representative & US Senator as often as your little heart desires! Tell them to support HR2288 --> HERE <--! THANK YOU!]
The Briefing
I tried very hard to remain calm the days before the briefing. My speech had been finished for weeks. I felt confident that I had done all I could to promote the briefing and fill the room. But I was still overwhelmed on the inside. The stress was enormous, the pressure to do right by our military families was immense. Just a few days before, I got pretty sick. Beautiful fever blisters took up residence on my lower lip and chin making me terribly self-conscious. The last ‘look’ I was going for at the briefing was ‘punching bag’. But I realized pretty quickly that my words mattered so much more – and on that front, I was ready.
The room was full. It was bursting at the seams kinda full.
There were so many families there! YEAH! That meant more to me personally than any legislative staffer that showed – and there were a few of those, too, which was good. But I want to sincerely thank the families that attended. No one understands more than I what it took for you to be there. THANK YOU. I want you to know we are devoting ourselves to making this happen for all of our families. And your presence said so much to your fellow military families who could not attend. Again – THANK YOU.
We were set to go. It was very well-organized and my sincerest thanks to Autism Speaks and the staffs of Congressman John Larson and Senator Kirsten Gillibrand who attended to every detail.
Stuart Spielman of Autism Speaks was the emcee, and he did a fabulous job. Thank you, Stuart. Rick Remington and the Communications team from Autism Speaks were phenomenal as well. My sincerest gratitude to everyone who contributed to making this event possible. (Thank you, Ali!)
Ok. Now on to the good stuff.
Image Courtesy of Autism Speaks
Congressman John Larson [D-CT], my Congressman entered the room and took to the podium on a mission. His voice was certain and his words were deliberate. He spoke of our conversation last February 2011 and the impact our families’ struggles had on him. He heard and listened that evening and it has stayed with him each day since. Now sitting at the end of the panel table I began sobbing through his words. Someone had listened. To me. Someone wanted to fix it just as badly as me. I was overcome with the enormity of all the hard work of this last year and how fruitful it truly proved to be as I sat in this briefing room.
The Congressman finished his remarks and left the podium stopping to shake the hands of each of our group of presenters. He got to the end of the line; there I stood still wiping tears away when he grabbed my hand, put his other arm around me and said, “Thank you. Thank you, Rachel.”
All I can say after that was how relieved I was when I was not next up to speak. Rather it was time for Karen Driscoll, Rock Star Autism Mama from ACT Today for Military Families, to do her thing and educate all those in attendance (some legislative staffers, some folks from TRICARE and other organizations) about the reality of the ECHO program segregation of autism treatments. As usual, she nailed it and there was little to discuss. Autism therapies in ECHO = WRONG.
We were also honored to have Dr. Geraldine Dawson, Chief Science Officer of Autism Speaks, speaking on the science of autism. You see, the DoD has long been arguing the validity and effectiveness of Applied Behavior Analysis (ABA). No worries, Friends. We now have permanent record of Dr. Dawson speaking at this briefing in support of military families having access to ABA as “the safe, effective medically prescribed standard of autism care.” Hooah, Geri! THANK YOU!
It was my turn. People, let me tell you, I was also on a mission. I had no doubt that my message was clear and would be heard once again – NO military family deserves to be denied appropriate, accessible best-practice medical care. Military families with autism are proud families, too. We want the best futures possible for our kids. We want to serve our country, too. And when our soldier’s work is done, we want him or her to retire knowing that they have earned a secure future of care for their children.
Though my speech came easy to me, I had rehearsed it a thousand times in prior weeks; I was not prepared for the unexpected flash of PTSD when I arrived at the words, “Now a Sergeant Major, it was only a month into my husband’s second tour in Afghanistan when he received my call to tell him – his baby girl had autism.”
I broke down in sobbing tears again. So did most of the room I was told. I could no longer see through the fishbowl tears that had settled on my eyeballs, but I take their word for it. By the end of my speech, I felt pretty confident that I was heard and it was probably the first standing ovation I have ever received outside of singing The National Anthem (and those suckers had to stand).
Next up was Jeremy Hilton, a retired Navy veteran and stay-at-home-dad to a beautiful girl with autism. His wife is active duty Air Force. Jeremy spoke of the painfully long process to obtain the correct diagnosis of autism and went on to explain what little services they were able to access via ECHO – just four hours per month at a provider that was three hours away.
Karen Driscoll spoke again. This time she shared her military family’s story. She spoke of her husband’s service. Jerry is a career Marine who has served two combat tours in Iraq as a MEDEVAC pilot, flying into hostile areas to retrieve our wounded. He was doing just that when he learned of his own son’s autism diagnosis. Karen spoke clearly and honestly about ‘the right thing to do’ in moving our legislators to take action and pass HR2288. Thank you, Karen. You are a force.
The briefing wrapped up with two more families that came forward to the podium. An Army wife and mom came forward and spoke of the lack of support and services for her child with autism. She was angry. I don’t blame her.
But our last speaker was perhaps the most affecting. A veteran of nearly 30 years came forward holding a picture of himself and his son with autism. Scott spoke of reaching his 28th year of service to his country and preparing to retire. When he presented himself for the retirement physical, he learned he had lung cancer. And he was relieved. Relieved. About having cancer. WHY? Because it meant he had to stay in the service to receive treatment, and it meant that his son would continue to qualify for autism treatment via ECHO. CANCER. Scott may be one of the most loving parents I have ever met. He felt blessed by cancer so that his son could be treated for his autism just a little longer. And yes, THANK GOD, Scott is doing well today.
So you see, this briefing was kind of a big deal and I have so much more to share with you about my trip to DC. But I have a lot of work still ahead, and so I will have to fill you in on the rest a little bit later.
THANK YOU to everyone who has supported me and encouraged me throughout this journey to help my fellow military brothers, sisters and children. I have gained more blessings and learned more about life through these struggles than I ever could have without my daughter’s autism.
By the way, today is our Diagnosis Day. Groundhog Day. But for the first time in two years, I feel like I have woken up to a new day. The curse and darkness of that word ‘autism’ have been lifted. I now know without a doubt that my daughter and everything that makes her who she is, has been and shall continue to be, the most absolutely perfect gift God could have ever given me.
Cheers, my friends!
Rachel
What I Signed Up For
Of all titles I hold, Mother is the one that has brought me here today to speak to you. I am an Army wife as well, but that is a role I chose shortly after 9/11 with full knowledge of what I was getting myself into. War was imminent, terror threat levels were the new casual conversation and I was marrying a career soldier who told me his duty would always come first. And I signed up for that.
I signed up to serve my country, too.
And when my husband ran off with the other love of his life, the Army, to fight on the battlefields of Afghanistan as an Infantry Platoon Sergeant, I proudly kissed him goodbye as he patted my belly and told our daughter to behave for mama. He told her he’d be back to meet her when his work was done.
My husband was due home on leave for my daughter’s birth the following summer of 2006. He would arrive a day late to meet her, but in military life it was understood that a day late was far better than not at all.
Our daughter, RM, was born with special needs and required intensive medical care. She barely survived those first weeks and yet at 15 days old, my husband kissed her goodbye and headed back to Afghanistan. He would return home again on a Red Cross alert just days later as our baby girl began slipping away. My husband remained by her side for another two weeks of emergency leave to watch her inch her way to stable condition before leaving her in her hospital bed once again to return to war. Because that is what we signed up for.
It was my job to serve on the home-front. Our daughter had a feeding tube and was in congestive heart failure. She had open-heart surgery at 4 months old, but by then Daddy was home to help and RM’s health was improving. Not once did we worry about finding her the medical care she required. We felt blessed to be a military family and often joked that we only paid eight dollars for hospital parking for open-heart surgery – as it should be when you serve your country.
In early 2010, under falling snowflakes my husband kissed his healthy, beautiful little girl goodbye once more as the battalion loaded up and headed back to Afghanistan. This was Army life, so we wiped our tears and held our heads high, proudly waving to Daddy as they pulled away.
Now a Sergeant Major, it was only a month into my husband’s second tour in Afghanistan when he received my call to tell him – his baby girl had autism.
“What does that mean?” he said. “Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.”
But I had no answers for him. I had no hope to offer.
I had no points of contact as an active duty Guard family. I had no one to ask, “What do I do next?” For the next several months, there were many more phone calls to my husband in Afghanistan, and still I had no answers to offer him.
What I had learned was that autism therapies were largely unavailable to our military families. I had learned that the small amount of services offered through the Extended Care Health Option were grossly inadequate and often impossible for military families on the move to access.
My husband has served honorably for 25 years. He was a scout sniper in Desert Storm. He has earned a bronze star, an army commendation medal and a combat infantryman badge with star for his service throughout two tours in Afghanistan. He has also been awarded a meritorious service medal, three more army commendation medals, six army achievement medals, and eight good conduct medals. He has earned the right to retire. But he cannot. Because he worries every day for our daughter and her future and he knows that he loses what little services are available to treat her autism if he retires. He worries every day that if he gets sick or injured and is medically retired, that he loses that coverage.
There is one more tour to Afghanistan on our horizon. And my Command Sergeant Major will go once again when duty calls. Because that is what he signed up for. That is what our service as a family requires of us.
But not being given access to the care our children need is NOT what we signed up for. This is NOT what any military family deserves. We sacrifice so much – YEARS at a time and we complain little.
Since my daughter’s diagnosis of autism, it has been my determination to see that the right thing is done here. Because if you ask any military family what they DID sign up for, they will tell you - freedom - yours and mine.
And as a mother, I simply cannot let any of our military kids go without the treatments they so desperately need to which their service to our country undoubtedly entitles them to. Because they did not sign up for THIS.
Me and my Stimmy
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Laugh Those Stimmy Tears Away
The Bloggess
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