He is not a freak or weirdo, at least no more so than you or I. He is a young teen, working through the difficulties of puberty with the added bonus of learning, understanding, teaching and dealing with his relatively new diagnosis.
I was deployed in Helmand province, Afghanistan, when I found out my son had been officially diagnosed with AS. As a parent, I felt helpless. I don’t say hopeless because I know there is a sunny-side to all of life’s problems, you just have to get to the point you can turn the situation over and find it.
I felt helpless because I wasn’t there to hold my boy’s hand. I wasn’t there to hold my wife’s hand. I wasn’t there to be the reassurance I knew they both needed. My son needed to know that I would do anything for him, help him learn about AS, help him understand it, and help him work through everything and develop the skills to beat it.
All I could do was write an e-mail or try to talk on the phone or Skype (always a challenge when there are three boys in the house, all wanting to see me at the same time and tell me about their lives – we all know those computer cameras and screens are only so big).
I couldn’t be there to just put my hand on his shoulder, give him that little physical touch I know that helps him relax, remain calm and reassure him that it will all work out.
I felt helpless for my wife. Not only did she get this news that we probably knew deep down, just weren’t ready to accept, but she had two other boys that she needed to care for and tend to while I was half-way across the globe, nine time zones away.
Lacrosse and soccer practice, Cub Scouts, Boys Scouts, after-school friends and weekend birthday parties all still needed to be taken care of, but they couldn’t receive the attention they deserved. She and my son needed to deal with this new wrinkle in life. It was overwhelming for them both, and the stress could be felt by the younger two boys as well.
I was helpless to do anything about it. I’m a fixer and I want to fix things immediately, and by being stuck in Afghanistan, I couldn’t fix my family. I couldn’t fix the parts of my life that meant the most. There were four people in the world who needed me and needed my special ability to fix it, and the moment they needed me most, I wasn’t there – I was helpless.
What a lonely feeling it must be to receive this diagnosis, I cannot even imagine. As a young boy, to not have your father, a “tough” Marine at that, there to give you that hand on the shoulder or that smirk and silent acknowledgement that “everything is going to be alright. I’m not going to let anything hurt you.” It had to be almost devastating to my son.
What a lonely feeling it must be to be sitting with her oldest son, the one who is so much like her it causes friction at times, to be there listening to the doctor tell you, tell your son, that he is now different according to societal norms.
Wanting to be strong for her son, to have to play both mother and father and wanting to scream at the heavens “why” and cry and be vulnerable, but knowing she had to be the one to carry on and push him through it.
She had to take more time with her oldest son to learn and understand about this new diagnosis, yet balance that with the equal time for the other two very active sons whose schedule in itself is a full-time job. Add to this the loneliness that there just aren’t that many people who understand autism, let alone Asperger Syndrome.
How do you talk about it in a combat zone? Who do you talk to about it? Are there others who deal with similar issues? Does the Marine Corps even understand? Does the Marine Corps have programs in place, do they have people available, do they know what services are required and can they provide them to me in a combat zone, to my son, my wife and my other boys?
As parents, my wife and I may have actually been part of the problem, not the solution, for many years. I think we didn’t ask all of the questions because deep down, we didn’t want the answers.
He was diagnosed less than a year ago, only after strong urging from his therapist – someone he has seen for several years, someone he trusts implicitly, and someone who has watched him grow. His therapist asked the difficult questions, and, as some of his behaviors became more prevalent, pushed us to ask more questions and seek more answers in an effort to help our son feel “normal” and be “normal.”
Once my son learned about AS, he began to understand more why he wasn’t as good at team sports and why he always wants to be the one in charge, yet doesn’t like to accept responsibility for team failure.
It’s a daily grind, often ending in raised voices, teenage attitude and hurt feelings. In the end the work gets done, but not without some sweat and tears.
My purpose in writing this isn’t to evoke sympathy for me, my son, my wife or my family or to place blame on anyone or any organization because of my son’s autism. My purpose in writing this is to help others understand and let others know that my family isn’t unique.
Even today, as more and more families are faced with this new epidemic, there is still very little our services family programs know about and understand.
We need more education, better education, not only for our senior leaders and decision makers, but throughout the Corps, the other military branches, the Department of Defense and our government.
Every leader, Marine Corps or commercial enterprise, stresses the family as essential to company success and growth, however more often than not these same leaders do not have as diverse a knowledge as they would like.
This needs to change now and our organization, as a whole, is responsible for making this change both positive and substantial. More resources are required to develop programs that help families.
Even at a base as large as Camp Lejeune, the services required to help those diagnosed with AS or autism is not as significant as it should be for an epidemic and the services to help the families are even less.
I am determined to be my son’s sword and his shield. I am his advocate and will be the advocate for even more like him. I am my son’s voice in this world of noise, and I will be their voice too.