April 1, 2012 by Marj Hatzell
I never set out to be an “Autism Blogger” and I certainly never considered myself one. I didn’t want my every moment consumed by autism because honestly, there’s more to our lives than that. The truth is, autism is a very big part of our lives. While it doesn’t solely define who we are, it is very much at the core of our family.
Everyday in our house is Autism Awareness Day.
I’m not lighting it up blue, or doing marches, or raising money for big groups. I prefer to make a difference at the local level, doing what I can for Bugaboo’s school (they need all the help they can get), his non-profit music therapy group or the small local foundation that helped us pay for Bugaboo’s car harness. Grassroots and stuff. Change at the local level. That’s me!
And while I resist it at all costs, I really am an autism blogger. Autism is part of my life. I’m automatically one of them. Even if I don’t think I’m a great shining example of an autism parent and have unpopular opinions. And boy howdy, there are many lines drawn in the sand right now in autism. Parents against autistics, older parents versus younger parents. Cure versus no cure. Neurodiverse or not. Biomed versus ABA. It’s enough to make a person’s head spin. Politics as usual, no? (Pssst, this is an excellent time to point out that everyone is entitled to their opinion. THEIR OWN. And I respect that, even if I disagree, or point out why I feel a certain way. Doesn’t mean that your version is wrong, just different than mine. Can we agree to disagree now? Please? I can haz peaceful blawg now? Kthxbai!)
What I’ve decided to do is to devote this month to showing people what OUR version of autism looks like. Our version is different from other families’ version. In fact, while nearly identical development the first two years, my boys are vastly different. What works for my children may not work for yours. What works for yours child may not work for mine. No two snowflakes are alike. Our kids have many, different layers (I have layers. onions have layers. QUICK! Ten points to Hufflepuff for the name of that movie!). That’s why it is up to each individual family to learn what they can from a variety of sources and make decisions based on what will work best for their family.
If you’ve been reading for a while you know about the pee, the poo, the floors, the holes in the walls. You know about the padlocks and alarms. The sleepless nights and the shortened vacations. But the new people? Hope you like roller coasters. You are in for one heck of a wild ride.
I want parents of newly-diagnosed kids to know it ain’t all sunshine and roses but that our kids are inherently beautiful and amazing. I want them to know the sadness and the pain, while understanding the unconditional love. I want them to see how much we struggle but not feel pity because we are proud of who we are. I want them to see how hard we work just to make it through one day. I want them to see how vulnerable I am but that I can still keep my head up high. But most of all, I want them to learn to respect autistics as individuals with thoughts and feelings and understand that awareness is not enough. Because not being able to speak is NOT the same as not having anything to say.
I’m absosmurfly going to keep it real. Very real. In all its raw, unedited glory.
So hang onto your hats.