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.”
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.