LESSONS LEARNED



2011 Rally in Tally against Governor's Cost Freeze

I have been on a journey over the last twelve years that to outsiders may have seemed frantic, tenacious, driven, and even sometimes selfish and maybe even a little crazy. I have grown from a meek, mild, immature young wife and mother into someone that I never thought I would be. It wasn’t planned. I look back and I am unsure how I even got here. I have become a Mama Warrior as I like to call it. It started out fighting for my son, Austin, but became so much more than that. This has become a mission in my life, fighting for children and adults and their families that are living with Autism Spectrum Disorders.

Before I continue, let me clarify what I mean by “FIGHTING FOR”, because I find that this phrase can divide people around me very quickly into factions. DIVISION is our enemy. The only way to WIN is to fight together, and to do that, we need to know for sure what we are FIGHTING FOR. My definition is as follows: doing whatever it takes to help individuals living with autism and their families to reach for the stars, follow their dreams, and be happy and healthy. I fight for those living with autism to be integrated into our society in whatever way THEY CHOOSE. I fight for early intervention to help the little ones to speak and be safe and express their wants and needs. I fight for education, dignity, inclusion, patience, kindness and understanding. I don’t fight for more than others get, and I won’t except less either. I fight for the chance to achieve the best possible outcome for all of us, whatever that may mean.

When I started on my journey in March of 2002, autism affected an estimated 1 in 500. Those numbers have risen to an estimated 1:68 children born in 2002. I believe that we have finally reached the point where we are no longer fighting about if in fact there is an increase. We wasted the last 12 years on that. I don’t hear those arguments much anymore.

I fought from 2008 until I left my position fighting to pass legislation for the Medically Necessary treatment for Autism Spectrum Disorder in December 2012. Thankfully, that fight continues by many people that I am blessed to call my friends. When I was downsized from my position fighting as a National Advocate, I began focusing on the next big fight that was needed. We need an ARMY of trained caregivers to help our children, young adults, and their families as they try to maneuver through a society that is so difficult for them to understand, and that has denied their existence for far too long.

Parents in Action, Inc. is the 501(c)(3) Non-Profit organization that we have formed that is training caregivers and getting them into the homes of Southwest Florida families right now! We are doing it! While I sit on committees on the state level to ACKNOWLEDGE that there is a shortage, we have been able to provide over 7,800 hours of services to families locally without one dime of grant money or assistance from the state of Florida. We have protected families, and made life better for many, but not nearly enough. We work tirelessly to make this happen without ANY ADMINISTRATIVE STAFF, OFFICE, or GOVERNMENT DOLLARS. IT IS WORKING! I know it is on what seems like a small scale, but IT IS WORKING!

This project of ours is a labor of love for all of those we know and have yet to meet who are affected or will be affected by autism. IT HAS TO BE DONE NOW! We can no longer sit and discuss it. We need to move, and we need to move fast.

I finally learned a VALUABLE LESSON on the 4th of July (of all days), that I can work tirelessly to do this along with the people that we are blessed to have working with us, but that’s not enough!  I started this for my love for my son, Austin. My inability to reach out and delegate and engage others almost cost him his greatest advocate, me. I had a heart attack that almost ended my fight. I was BLESSED with a second chance at life and I am not taking it lightly. No matter how hard I drive myself, this has to be a team effort. We need to be ALL IN to make this happen! I am writing this to reach out to my community, and their communities, and their communities to ask for help! These children, young adults and families are RIGHT HERE, RIGHT NOW and they need ALL OF US to work together to help!