Previously, we introduced you to Emily Shirley as a Parent of the Week. This week, we’d like to tell you about her efforts as an advocate, and let you see for yourself why she’s such a Hero!
AutisMate: How did you decide to start your petition against TRICARE’s proposed changes regarding ABA therapy coverage for military families with autism?
Emily: I was visiting my parents in NC with my son, Jaxon [who has autism], and just happened to check my email. I am signed up to receive all official Department of Defense info via email so I was notified of the impending changes to the ABA therapy services starting July 25, 2013. I only got about halfway down the email before I gasped so loudly that my Dad thought I had received life threatening news about a family member or something of that nature. Well, to be honest, at that moment I felt as though I was receiving the worst case scenario for Jaxon. I immediately went to the Change.org site and typed out as much info as I could think of to persuade the few hundred people I hoped to reach. 7,000+ signatures later… :)
AutisMate: What has surprised you most about the autism/special needs community as a whole?
Emily: These moms and dads that I have had the pleasure to meet and get to know, if only through Facebook, are a fierce and loyal group. We don’t need to know details of one’s situation… we just need to know that you need support and we enter the scene like a herd of classy, intelligent elephants. When I started the petition, I knew that I would get several supporters from other parents but I was absolutely shocked to see how thankful, understanding, non-judgmental, and patient everyone was toward me. I received far more praise than I ever deserved.
AutisMate: Tell us more about the autism community within the military. How do the two influence each other?
Emily: As most already know, military families are a sub culture that almost always stick together: right, wrong, or indifferent. The Autism community within the military is even more fiercely loyal than in the civilian world… It’s just one of those unspoken rules that are abided by. With that being said, I do not have enough experience to accurately speak on how the two are intertwined. Our Dev Ped is off post as well as Jax’s speech and occupational therapy so we don’t have much experience with how things are run on post. I do know that our insurance, TRICARE, covers a huge amount of services for the dependents of active duty, so for that we are eternally grateful.
AutisMate: Who from the autism/special needs community has had the greatest influence on you?
Emily: If I had to pick one person who I admire for her relentless work in the Autism community, it’s Jenny McCarthy. She is a lot like me in the fact that she just refuses to stop digging for answers, cures, symptoms, causes, and treatment. She has a huge platform being known around the world for her advocacy in the community when her son, Evan, was diagnosed in 2005. She is grounded and can relate to each one of us on so many levels. It also helps that she is hysterical, because we all need to just laugh to keep from crying sometimes. McCarthy served as a spokesperson for Talk About Curing Autism (TACA) from June 2007 until October 2008. She participated in fundraisers, online chats, and other activities for the non-profit organization to help families affected by autism spectrum disorders. Her first fundraiser for TACA, Ante Up for Autism, was held on October 20, 2007, in Irvine, California. She is a prominent spokesperson and activist for the Generation Rescue foundation, and serves on its Board of Directors as of January 2011. Jenny McCarthy could so very easily allow her legacy to be Playmate of the Month October 1993 but that is just not enough for her. She wants to be known for so much more than that!
AutisMate: Where/how have you gotten most support for your efforts in terms of the petition?
Emily: I received signatures, comments, and support from people in Japan, Egypt, Germany, Puerto Rico, British Virgin Islands, and almost any other country you can think of. It was a worldwide effort that I never expected to be supported as well as it was. Personally, I have gotten the most support for the petition from my Mom and Dad, who are excited to see the activist come out in me. I have also had a great deal of support from my in-laws, particularly my sister in law, Amanda who relentlessly shared my petition and was probably responsible for half of the signatures we received! Through all of this, I realized that even if Jaxon phases out of his Au-someness, I will still support, petition, etc Autism causes for a long time to come, especially in regard to care for military children.
AutisMate: TRICARE has indeed revised its policy. Does your journey stop here?
Emily: Absolutely not! A Mommy’s job is never done, right? TRICARE ONLY revised the policy for active duty children and adults. We still have thousands upon thousands of children and adults of retirees that risk services being cut in the near future. The children and adults of retirees are AS important as active duty dependents so we still have a fight on our hands. I adamantly believe that no one is capable of putting a time limit on how fast a child on the spectrum should progress or how much care they should be awarded. Autistic souls must be nurtured constantly over long, long periods of time to achieve the highest level of success. I plan to further assist where needed with getting the policy for retiree dependents revised as well. After this successful experience, I cannot picture a time in my life where I will not be involved on some level with the Autism community.
AutisMate: If you could say one thing to other aspiring advocates, what would that be?
Emily: There is just so much more for us to figure out and piece together. Alone, we can’t accomplish it all or find a cure, but together, as clichéd as it sounds, we can move mountains! Thank you and congrats to all of you who assisted or signed the petition. Small actions make HUGE changes!
A big thank you to Emily for taking the time to answer our questions!