Rachel Kenyon is the wife of an Army Command Sergeant Major. They have a young daughter with autism. Rachel recently met with her Congressman, Rep. John Larson, which led to HR 2288 Caring for Military Kids with Autism Act. Our voices are being heard! Thank you to all the parents for sharing their stories, educating and building awareness.
By Mrs. Sergeant Major
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.
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!
This post was originally posted on Rachel Kenyon’s blog StimCity.