~"Charity creates a multitude of sins"~Oscar Wilde
I have been blogging for almost five years. The whole reason that I started blogging was because I simply could not fathom how autism was being portrayed in the main stream media. I remember thinking"This isn't my experience-this isn't the way our life is..there has to be other families like mine!" Thankfully, I have found many-both on and off line. This is a slightly revised post from 2009. It was my rebuttal to the horrible video "I am Autism" that Autism Speaks had put out. It scares me that four years have passed-and still, the idea that someone can speak so openly and horribly about human beings is considered (by many) acceptable. Four years later-and we need to do better. There needs to be a lot more listening and a lot less judging in the neuro-diverse community.
It started with a blog post on acceptance. Which, as per usual-turned into an argument. I myself made a few comments. One in particular was in direct rebuttal to something a parent said. They made the comment that 1.5 million people in the U.S. SUFFER from autism-I replied with the simple statement-"my kids don't suffer" In turn I was told that I was one of the "lucky ones"-and then given a detailed description of all of their struggles. I never implied that my children didn't struggle- I simply stated that they didn't suffer. They were right however in one aspect-I am lucky.
Three of my four kids are on different parts of the autism spectrum. They work very hard to try and navigate a world that doesn't always make sense to them. Every day poses new challenges. Yet, they face them-because I ASK them to. How staggering is that? Being a mother is a powerful job-definitely not for the faint of heart. I take my position seriously. Oh, I have made many mistakes-which I no doubt will hear about in years to come. But I am learning. I think the most important lesson has been that children become what you tell them they are. All children, no matter what their ability. It is for that reason I talk about acceptance and love instead of laundry lists of symptoms. My kids have disabilities, they are not broken. They are not empty shells, they don't need to be "recovered". They are right in front of me (most of the time asking for things) I had best make sure my words have substance and meaning. Because those are the words that they will carry with them for the rest of their lives. I am their mother. That is my job, my responsibility, and privilege.
It always astounds me when I am told things like "you are one of the lucky ones" or "your kids aren't really autistic". Astounds me. What I find equally mind blowing is the thought that because I accept my children, accept that three of them have autism-I don't do anything to help them. Nothing could be further from the truth. I just don't have the need to advertise the things that we have done, in such a way as to garner sympathy or admiration for myself. I'm a mother, and I'm just doing my job. It is not about me. It is about my children. Yes, we have worked really really hard, but my kids...they have worked harder. I might do the steering, but the driving is all them. They are incredible human beings-all four of them. I am blessed.
That's not to say I don't have days when I want to run away from home. That however, has nothing to do with autism ..but more to do with the fact that I have four very active kids, three hyper dogs, an overly affectionate cat, a leaky roof, faulty electrical wiring..and a myriad of other things.(sigh) I think that you truly know that you're a mother when a private and secluded bathroom of your own is your secret desire.
I am not a warrior mother. I am more of a worrier mother. I worry about getting my kids the appropriate services, I worry about their education, I worry about their needs being met, I worry about discrimination, I worry about them going out into the world as adults, I worry about films like "I am autism", I worry about the power of people like Suzanne wright and her awful words, I worry that they do not give voice to the people who do have autism...I worry that this will somehow demonize my children-who will always have autism, I don't however worry about "recovering", "curing", or somehow defeating them. I don't worry that my children view themselves as somehow broken and needing to be fixed. I don't worry that they see themselves as somehow less, or as a burden. They know that they are cherished, that they are loved, that they are different-that different can be hard, but it isn't wrong. I recognize that my children, all of them, are human beings. Deserving of the same respect, treatment, inclusion and acceptance as is any other human being. I recognize that it is my responsibility to try and make the world a better more accommodating place for them. I recognize the importance my role as their mother is. I think about all of this and can say with certainty, yes, I am one of the lucky ones.