AutismOne: Through the Eyes of A Mother
AutismOne: Through the Eyes of A Mother
Pulling up to the hotel for the 2012 Autism One/Generation Rescue conference in Chicago, I was struck once again with the realization that life must unfold the way it does for some reason, and that I was bound to figure it out sooner or later since it continuously smacks me on the side of the head as if to say “hey, do you get it yet?” I used to pull up to this very same place 5 days a week. I didn’t realize until I arrived that the conference was being held in a hotel adjacent to the company headquarters for which I worked for 12 years in environmental sales. In those days, I had a company car, a big office and a nice fat expense account. I was one of the best at what I did, and I believed I was doing something important- something to save the planet. Today I was pulling up a couple hundred yards away shaking my head at the irony that the rewards from that career are a distant memory, the planet is more contaminated than ever, and that contamination had made my child sick. Making him well is my job now, but I no longer feel like one of the best at what I do. The best lay beyond those doors in the form of doctors and parents and researchers who sacrifice and give of themselves to help suffering families. I was returning to where I came from and this is where the truly important work happens.
The first thing that struck me was the energy. The place vibrated with a combination of hope and fear. I imagined that might be what people feel when they walk into a war zone. Another reminder of why the term warrior-mother feels right. The confused soldier-parents with the dazed and exhausted eyes, the slumped shoulders. Determined to fight for their children, they enlisted in this grassroots army and this is their boot camp. The experienced leader-parents. You could tell this was not their first tour of duty. They were eager to show the newbies how to survive, how to choose their weapons- diet, enzymes, testing, supplements. Having earned their stripes, they were ready to discover what would take their child to the next level- HBOT, stem cells, and new treatments. The revered professionals who orchestrated the battle plans, understood the enemy, knew how to attack. They were leading a fight that most of their colleagues pretended didn’t exist. They took risks, faced ridicule and made sacrifices for the greater good. And there were the innocent victims. The sick children we were here to protect. I hadn’t expected children to be in the midst of the swirling adults. Such a myriad of challenges that made it clearer where the phrase “when you’ve seen one child with autism…you’ve seen one child with autism” came from.
Everyone shared a common goal. No child will be left behind.
As each day unfolded, my notebook filled up with lists of websites to refer to, research studies to review, books to read, lists of treatments that were showing promising results. So many questions to ask my doctor, who was not only attending, he was a speaker. Because of a Generation Rescue grant, my son was seen by Dr. David Berger, a doctor who was actively learning and leading how to help our children. Helping to develop MAPS. A doctor who listened to each of my child’s symptoms and developed a treatment plan and would never dismiss a symptom as “just a part of autism.” More relief, more gratitude, more hope. Day after day, I absorbed knowledge from doctors and researchers who had come to share the results of their work and parents ready to share their stories of what had or had not worked for them. I was floored by the parents whose children have reached different stages of recovery. They were not a myth- their children were getting well and it was reflected in their joy, their body language, their passion to help. Great medical minds whom many of us have no hope of being able to bring our children to see were there answering questions and offering up ideas. At night I would drop into bed and the power of the day would overwhelm me. This fight was far from over. Would our children someday all come together as survivors of an atrocity? Share stories of what they went through and offer each other support as their parents had supported each other? Some would still bear the scars of what they had endured. Others would have become leaders who followed in the footsteps of the great people who had fought to save them. Surreal thoughts that swirled from being immersed in the camaraderie that forms from shared fear and shared hope.
I had taken this journey alone while my devoted warrior-dad husband stayed home to manage the war at home. While I was traveling home, I let myself fill with the sense of hope that I felt the first time my son started to respond to the diet and supplements we had started. I had been able to hug my Rescue Angel. Thank Jenny McCarthy and Dr. Kartzinel for making me understand that I had every reason to believe I could help my son. Thank the Doyles, and others from Autism One and GR for bringing together this life changing event. Listen to the amazing medical leaders whose books and research were spreading understanding that there is much that can be done. We were not alone. While there should be more giants working on this medical crisis, the ones who are in the trenches have our backs. I hope they all know that they are true heros.