When my son turned two the war began. At that time, with his brother just a new born and his sister four years old, I was not a “prepared for war” kind of mom. I was more like a sleep-weary, on-the-verge-of-tears-every-moment and I-just-want-to-hide-in-a-bubble-bath kind of mom. I had no idea that, eleven years later, autism and my family would ever come to an agreement.
Autism took my family by storm in the early spring months of 2002. It was brutal and harsh and hard to accept. In those days, autism sealed fates, ended childhoods, and crushed dreams. Autism was clearly, from where I sat in my bathtub, a tough opponent. There were many days when it felt like it was bigger than all of us. Even now, I am not at all sure if autism expected me to fight back in those early days or if it expected just to walk in and take him while I waved good bye from my bathtub. At two, when he was in his own world without speech and without a real want to interact with any of us, I will say I wasn’t sure if autism or my boy would win. In the early days of our very personal war, I wasn’t even sure if there was a war to be won. There were days when it felt like the war had been lost before I ever got out of the tub and over to the battle field. Maybe, I thought, I was just the last to know.
Then I found, as we failed to make any real progress, that denial, dedication and passion can be a good combination. It’s the kind of combination whose product equals that never-give-up kind of fighting philosophy. No matter how dark, no matter the odds, no matter how hard you rail against me, no matter how unprepared I may feel…I will hold on to him and I will fight you.
I cannot say it has been an easy fight. Fights, just by the nature of the word, imply difficulty. They are just that…a fight. Down and dirty and, clearly, more than a skirmish. A whole lot more than a tussle. It has been an all out, down-in-the-mud, get-on-your-knees-and-pray kind of war that has been fought in the heart, in the doctor’s office, in IEP meetings, in the classroom and even on the playground. It has sadly been fought in the minds of teachers who don’t want imperfect children in their perfect classrooms because, as they have told me without any hint of apology, they were not trained for kids like “that”. We have fought every step of the way because it is constant. Sometimes we have fought alone and against all odds as the “experts” have abandoned us on the battle field because, with or without the majority support, we will stand with him.
And, then one day this thing happened. I am not exactly sure when it happened but somewhere right around fifth or sixth grade, the tears and the anxiety stopped and, in its place, the treaty came to be. I stopped needing to retreat to my bubble bath because I came to terms with autism and I stopped fearing it. I realized that I will not retreat. I will not hide. Autism just is. I think when I came to understand that ‘different is not less’ I also came to look at autism differently and the treaty came to be.
The Treaty goes like this:
I know you’re here. I get that you’re part of our emotional landscape from here on out but, autism… I am just NOT giving in. I will fight you every step of the way no matter what you throw at me because I am not signing him over to you or the special ed department. It’s just not going to happen. There is no towel to throw in and no white flag to wave because I am not leaving this battle field. And, get this, I will never give up on who he is and who he is meant to be because, no matter what the experts think they know, WE believe he is meant for greatness and you will not take that away from him or our family.
And, truly, I get that you’re bigger than me and there are days when you are going to reduce me to a puddle of tears and make me want to crawl back into my bubble bath but despite these truths, I won’t give up and give in and say you win.
What I will do is make a treaty with you and I will agree that you are here to stay but I won’t let you be a childhood end-er, a dream crusher. I will NOT sign him over to special education classes and a segregated education because that is what you and the educational administration have come to expect. So you do what you have to do, give it your best shot and by all means, bring your ‘A’ game with you but just know I will be there too…every step of the way…every single day and I will rail against you. And, you may be a tough opponent but, I kid you not, I am a mom and he is my son and I can be tougher than even I understand right now and I will NOT let you sneak off with him. There will NEVER be a time when my head is turned and I’m not looking because he’s worth it and his sparkles make it all worth it for me.
So bring it. I’m here and he’s mine and he’s worth everything to me so I will fight you every second of every day until the moment I see his life is his own. And, after that, I will still be standing guard over him…just in case you don’t believe that I mean this with everything that I am.