Power?

When Child 1 was first diagnosed, the pediatrician told us, in a nutshell "he has PDD-NOS. It's on the autism spectrum but it isn't autism." As a result, I spent the next 9 months in a complete state of denial. "He's on the autism spectrum but he doesn't have autism," I told myself. This meant that I didn't need to investigate ABA, or any kind of treatment options that the school district wasn't offering me. At my first IEP meeting, I happily accepted everything. I had no idea what I was doing, and after all, these guys are the experts, right? So, great! This nonverbal 3 year old, who is still in diapers, should attend a special day pre-school for 3 hours a day, and that's all. What the hell did I know? I thought I did good for him.

It was only just after he turned 3, and started scripting, that my denial was shattered. He was obviously autistic, and I needed to get off my ass and figure out a way to help him. So, I hit the "books" (internet), and found him a program. I found myself an advocate and I convinced the district to make it all happen. We started our home program when he was 3 3/4 and there were immediate results. Things got better.

Today he's 10 and he's awesome. Totally verbal, super smart, (almost) always happy, and the sweetest, kindest, gentlest person you could ever meet. Every teacher or tutor I've ever had has told me "I wish all my students were like him." He's a joy to work with and to be around, and I can't take credit for all of that, it's just his nature; it's how he was born.

I know that my experience with autism has been much easier than that of some of my friends' experiences. He has no behavioral issues, he has no meltdowns, at this point he has very few sensory issues; he's actually much easier to parent than his typical brother. I also know that I am lucky that this is my experience. I am very much aware that many, many other parents have not had it this easy, and never for a second do I take this for granted. I consider it, now, my personal responsibility to give back to the autism community as much as I possibly can. So that my experience can help others; so that other parents won't feel so alone. I do this online as well as in "real" life, where I help parents in our district navigate the system and get services for their kids.

Here in cyberspace, however, there’s a war going on. It’s about autism parents vs. autistics, and ironically I’ve seen some of the worst, most patronizing behavior coming from my fellow autism parents on behalf of autistic people. I’m not interested in participating in a political war, though; politics frustrate and anger me. I can’t even watch the news without getting pissed and I certainly have no desire to fight a cyber war that has no end in sight. My instincts in all of these cases tell me to find a middle ground, but that’s never going to happen if I’m the only one who thinks that.

My friend Elise who blogs at Raising Asperger's Kids recently wrote "one thing I do notice in the autism community is that someone somewhere decided who the leaders are and who they are not." I know who the leaders are, and I am not one of them; the “leaders” have shunned me. I'm not politically correct enough, maybe? I'm too honest about facts and feelings? That makes sense; people don't like to hear the truth all the time, it makes it harder to maintain a morally superior distance from the rest of us. I don't even want to be a leader, although I have tried. I tried to help, I tried to create a dialogue, and it was an utter failure, but you know what? That’s okay; I'm okay with that, because it turns out that I don't have the energy or the interest to constantly argue about something, knowing that I can never win.

This war will not be ended by people talking about each other and not to each other. Long, well written blog posts which appeal to that particular readership are all well and good but unless these two different sides start talking to each other, this shit will never end. And I tell you now that I'm not interested in talking about this unless I'm talking to somebody, so unless somebody wants to directly engage me in a dialogue, you will not be hearing from me about this issue again.

My job here is not to “fight,” but to support. I want to reach out to as many autism parents as I can and say: you're allowed to grieve, you're allowed to be angry, you're allowed to have feelings, you're allowed to say "this sucks." Because I will try to help get you through this. And I will give you as much free advice about navigating the school district as I possibly can. And I will give you a place to speak about how you're feeling, free from judgment, free from criticism, free from the "thought police" which tell you that your feelings are bad and you should feel bad. Life is messy, it can be ugly and mean, and to be told that you must consciously repress your feelings about it is just wrong.

In conclusion, I'm going to quote my very good friend, Dawn, who sums it up perfectly:

In a world in which we are facing constant judgment from Neurotypical parents, to hear we are now facing it from our own community as well is exhausting.... I'm tired of being told i am a crappy parent because my child doesn't "behave" as others think he should, and i'm tired of being told i am abusive and a crappy parent if i don't say the right words.... honestly--i'm done with this discourse. Imma worry about my small family group and the health and well-being of my own kid. I no longer have the desire to be held accountable for the crappy parents other people have had. I am not perfect. and while i hold my son and myself to difficult standards of excellence, i do not expect perfection. And i'm not going to argue with someone if i fall short of perfect-- as humans are wont to do.

I've got your back, Dawn, and I know you've got mine. We're in this together, after all. I wish other people would realize that, too.

Edit: I'd like to add that if anybody has a problem with anything I've said, please tell me. Let's talk to each other, not about each other. If you don't want to put it in the comments, you can email me at jillsmo at gmail.com

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