I've written and deleted this post a few times since yesterday. There are so many thoughts swimming around in my head, and I've yet to find a cohesive way to write them all down. I am sure this post will showcase that, but I had to write it anyway.
I guess I'll just being with this:
I used to support Autism Speaks. When K was first diagnosed, I thought jumping on the Autism Speaks train was the next logical step. They were it when it came to autism. Or so I thought. There was a time I hated autism. Wished for a cure. Why? Because that's what I thought you were supposed to do. A truly happy life was out of reach, as long as autism was hanging around. It needed to be defeated, my daughter freed of its grasp. There was no other option.
If you've been reading my blog(s) for the past few years, you know firsthand the turnaround I've done when it comes to how I view autism. It's been a 180, for sure. Gradual at first, then quicker these past few months. I've probably left some heads spinning, as I've tried to find my footing while trying to "keep the peace" with those I've considered dear friends for years. Parents who now walk a very different path, but whose friendships I'd never want to lose. Life doesn't have to revolve around autism. Our relationships don't have to be defined by it. We are actual people, not just mothers. I know I will inevitably lose friends along the way, but I also know I've made a choice that's right for my family.
By now you've probably seen the op-ed piece written by one of the founders of Autism Speaks, Suzanne Wright (you can find it here.) I read it Monday night, after seeing a link on Twitter. I read it before any of yesterday's blogs posts, so my opinion isn't based on what someone else wrote. It's based on what I thought while laying in bed, hearing no one's voice but my own. I was so angry, and needed to vent, so I posted this on my personal Facebook page:
Of course, I know what happens when you post anything even slightly controversial on Facebook, but I did it anyway. Sometimes I get so caught up in not wanting to upset people, I keep my opinions to myself. That wasn't an option Monday night. I woke up Tuesday morning to find a plethora of blog posts about the piece. People who had been avid supporters of Autism Speaks were even coming out against them. It seemed to be the straw that broke the camel's back.
It made me happy, not being the only one who was incredibly offended by Suzanne Wright's words. Autism Speaks has had its fair share of fumbles, yet they never seem to care. They've asked what they can do better, yet never change. This was just the icing on the cake.
The piece proved that Autism Speaks doesn't take into account the opinions of those actually living with autism. Or the opinions of parents who are tired of their children being feared, or being used as the worst-case scenario for a pregnant mother. Who don't want to see their children blamed for divorces, or bankruptcies, or miserable lives. It's fear-mongering. Making autism into some Big Bad that rains down misery on the lives of everyone it touches.
*Warning, rant ahead*
Now, maybe you read the article and thought, well, that does describe my life pretty accurately. Maybe you want to tell me to shut up, or that I "just don't get it". Maybe your kids are older, and you hope puberty is hell for me, so I really know how bad it can get (K will be 10 in January, and we've been at this since she was 18 months old, so I'm not exactly "new" here.) Maybe you are where I was just a year or two ago, living in a constant state of sadness, in a life you never imagined, and one you cannot accept. I've been there. But, hey, maybe you just don't believe me. Maybe you know you have it worse, and nothing I write means anything to you, because you've already won this mommy-war (in that case, why do you read my blog?)
If that's how you feel, you are certainly entitled to your opinion, but this is probably where we should part ways. The truth is, there are very few people who truly know me and my family, and there are a lot of things I don't talk about in order to protect the privacy of my children. I know how hard life can be, but it's up to you whether or not you believe me. If you've been a longtime reader, you might remember the days when nothing was sacred, and I wrote about our darkest times (a couple blogs ago.) If you're new, you can only take me at my word. Even most (all) of my friends only know what I want them to know. So, yes, I get it, but I can't force anyone to believe that I do.
Autism is a spectrum. I would never discount the struggles many families face, because we've been through some mighty rough waters, ourselves. But, that's not the point. The point is how I want my kids to be viewed. How I want society to see their worth, and not think their mere existence is a burden no one should shoulder.
*End of rant*
A couple weeks ago we went to the circus. Before going, I guessed that K would probably hate it, and B would probably love it. I was wrong. K loved the circus, whereas B was ready to go almost as soon as we sat down. If I had made the decision to leave K at home, because I thought "I could never do that with her", she would have missed out on such a joyous experience! And I would have missed out on seeing it!
Get what I'm saying? Sure, there are things we try that don't work out, but that doesn't mean I just give up on living. That I do nothing, because I can't handle the "what if". I don't want to just exist. I don't want my kids to just exist. And I'm not OK with placing the blame on "autism" (i.e. my kids), because things aren't always easy. If I just existed, I would miss out wins like the circus, and I never want to be OK with that. We live typical lives, like we would if our kid didn't carry any diagnosis, because I refuse to let a diagnosis define us...chart our path in this life. There is no given, no matter what Autism Speaks says. And we can be happy and fulfilled, regardless of what they want people to think.
I don't curse the gods because my kids are on the spectrum. I don't define myself by my child's functioning label, or how much better or worse we have it than someone else. I just live. Like anyone else. I just happen to have autistic children. My life, the things we do, how we raise our kids, is not up for debate. It's not for anyone to scrutinize, or use to put me down. If it looks like we live charmed lives, so be it. I am not going to give up my children's privacy to prove that we know what hard is. What I want to show you is that even though we do go through hard times, there are always good times. Really, really good times, because we keep on living. Because that's what our kids deserve. Because we don't live in fear of failure, even if some giant organization thinks we should, because happiness can't possibly live alongside autism.
Now, I sincerely believe in the importance of insurance reform. I believe in helping families who struggle (not that Autism Speaks does this, mind you.) I want to find ways to mitigate the anxiety so many of our children struggle with, because they live in a world that doesn't always accommodate them. But, do I think we need to make our kids look like walking tragedies in order to illicit donations, change laws, or provide services?
I also wholeheartedly believe it is a short trip from saying our kids are burdens who break families apart, to finding sympathy for those who murder or harm their children. If autism is a Big Bad, then our kids will be seen as a Big Bad, and nothing, nothing good will ever come from that.
I want Suzanne Write to know, I am not going to break. My children are not burdens, not part of an epidemic akin to cancer or AIDS, and not the worst things that could ever happen to me. They are the best things that ever happened to me, and I will fight until my dying breath to make sure everyone knows that. A breath taken at the end of a full life, because I chose happiness. I chose to live. I chose to accept my kids...period. Just as I choose not to support an organization who doesn't see the perfect little people I do, whom I love more and more each day, just the way they are.
Call me naive. Tell me I don't get it. Tell your friends about this idiot blogger you know who hates the greatest organization in the world. Go for it. I've heard it before, and I'll hear it again. But if you stand with me, then speak out. Be the change. Let everyone know autism doesn't sentence you to an unhappy life! That Autism Speaks doesn't speak for you.
I'll leave you with this, because I think it's the most important part: would you ever want your children reading Suzanne Wright's words? Would you ever want your children hearing how some people negatively talk about autism? Because they are who we need to think about...our kids. Even if you believe your child could never understand what is being said, I urge you to think again. There are many adult advocates who have proven you cannot judge a book by it's cover, or a person by the amount of language they seem to possess. Would you want them to read this piece? That is really the only question you need to be asking yourself. I hope your answer is no.