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 11 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.
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, so in general I try to stay out of it.
But when I see my friends being attacked, I will come to their defense. I am not ashamed to say that I am fiercely loyal, and I will jump into the middle of something that doesn't involve me in order to defend a friend under attack. My tools are sarcasm and brutal honesty, and I'm not afraid to use them. You see, I don't care who you are, how important you see yourself to be, or how many followers you have; if you're acting like a bully, I'm going to tell you you're acting like a bully. Some might say the same about me, and I will accept that if I think it is warranted, because I take responsibility for my actions, at all times. I will apologize if necessary but I will also refuse to apologize, if necessary.
In the "real" world, however, my job is not to “fight,” but to support. This morning I spent an hour on the phone with a parent in our district, helping her to navigate the system and find the best services for her daughter who is autistic. Yesterday I met with another parent and did the same. I have three emails in my personal inbox right now from parents in similar situations. This is how I act on behalf of the autism community: helping parents. Helping them find support, for themselves and for their kids. The online dialogue is too much for me to take on, I'm just one person, and so this is the route I have chosen to try to make the world a better place for my son and for autistic people everywhere: one kid at a time.
I try to do the same on my blog, on Twitter and on Facebook. Here are some things I've written that I am particularly proud of that may be helpful if you are a parent trying to find services for your child:
- Getting your GenEd teachers ready for your autistic kid
- About Special Education
- "My child needs an IEP."
As always, you can contact me at jillsmo at gmail.com if you have any questions or if there's anything you think I might be able to help you with.