wisdomfromthesisterhood

The Sisterhood is a place to bring your cup of coffee to. Heck, bring the whole pot :). Sit down, relax, and fall in for a while. No divas or meanies allowed. It's about boy brain, kiddos, food, one crazy labrador, autism and a cat in recovery from a back tire incident. Oh the places you'll go :)

My Treaty With Autism

on September 25, 2012

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 it’s 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.

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4 responses to “My Treaty With Autism

  1. As a new mom, this post gave me goose bumps and I’m not just saying that.

    • You are so kind :). It has been a very long road through autism but, as he is getting ready to turn 13, I finally feel like we have a little light filtering in and all our fighting back is starting to pay off!! We will never completely win because autism will always be part of who he is but that is okay too. Thank you for your sweetness!

      • Thanks. In the posts I have seen, I really admire your blog and the way you approach autism on it. Your son is very lucky to have a mom like you who is fighting for him every step of the way. I think what you’re doing is amazing and I’m glad you’re seeing some light now. I hope as we continue to learn more about autism we also get better at helping those affected by it, even older people. Seeing someone like you is inspiring to a lot of other people and I’m sure it offers comfort to a lot of people as well.Thank you for putting something so personal out here and sharing posts like these. More importantly, thank you for taking such wonderful care of your son and being such a good role model to others in similar positions.

  2. You are truly kind hearted. I feel so thankful to be his mom. I really feel like this journey he and I and our whole family travels makes us better. Autism has made me a better person and seeing life through his eyes has “made” my life. It’s not always easy, no doubt, but it’s always good. And, I honestly believe that being honest is the only way to help others who are earlier in their journeys see that all is not lost. Autism does not have to be a childhood ender and it can be a blessing if you look at it through their eyes. And, I will be the first to say, there are different levels of autism and some journeys are remarkable different than others. We started out in a bleak place but his progress has been jaw dropping. Sometimes slow progress but, as you look back, you go, “Wow….look where we are now. I never saw that coming.” Thank you for your kindness…it really does matter and I appreciate your words. No matter where your child’s journey takes you, you will be amazed at who you become and how readily you will defend that child!!

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