Last night I was on Marc Rosen, Nick Hale and James P. Wagner’s blog talk radio show Human Potential. You can listen to the show by clicking on the link provided. The show focused on “The Importance of Allies.” I was really honored to have been asked on the show, particularly given my past and the things I once believed about autism and my daughter. I certainly did not begin this journey as an ally and so I am filled with a great deal of gratitude when told there are those who think of me as one now.
One of the things I forgot to mention last night as we talked, was this idea I’ve had ever since that day when I found Julia Bascom’s blog, Just Stimming, and specifically her post “The Obsessive Joy of Autism.” It’s an idea I’ve tried hard to put into practice these past few years. The idea is that because I made so many really awful decisions about my daughter, I needed to make a “living amends” to her.
The idea of a living amends is that as long as I am alive the only true amends I can make that will have any lasting impact, that has any chance at countering at least some of the bad choices I made, is to do everything in my power now to live my life differently. A living amends is different from an apology no matter how heartfelt that apology may be. It is an ongoing commitment to change, to be open, to be willing, to have humility, to learn, and to behave differently as a result of this new-found awareness and commitment. This is what I promised myself and my daughter just over two years ago when Julia’s blog opened my eyes to a different way of viewing my daughter’s neurology.
Since then I’ve had time to contemplate all of this and believe my role as Emma’s parent is to support her, encourage her, cheer her on and do everything in my power to make sure she feels empowered and supported to be all that she can be. I do not ever want either of my children to be who they think I want them to be, or who anyone wants them to be, for that matter. My job is to help them figure out who they want to be and then give them the support to help them be that person.
It is also this thinking that continues to drive me to do all I can to change how the world views autism. I don’t mean that to sound as egotistical as some might take it. I do not expect, nor do I believe I have the power to change the world’s view, but I do believe each one of us can and does make change happen one person at a time. There is a ripple effect that then occurs and that ripple effect repeated many times over does have the power to change what no single one of us can. There is a saying – together we can do what neither one of us can do alone. Or as Helen Keller is quoted as saying, “Alone we can do so little, together we can do so much.”
Julia Bascom’s blog is a perfect example of this. How many, like me, were radically changed as a result of her words? How many people then took her words and began to live their life differently? How many then altered the lives of their children because they now presumed them competent? How many? I’m guessing the answer is more than just a few… that’s the ripple effect in action!
Em & Ariane on New Year’s Eve ~ 2013
Posted in Autism, Autism Acceptance, Autistic Blogs
Tagged apology, autistic, blogtalk radio, communication, Education, human potential, Julia Bascom, language, living amends, making change, mistakes, Parenting, presume competence, ripple effect
I am in the midst of preparing the presentation I plan to give at the AutCom conference Saturday, October 6th. There will be lots of visuals and (hopefully) some humor. I intend to talk about our journey from diagnosis to terror, despair, anger, determination, discovery, acceptance and HOPE! I will keep it personal and hope that our story might resonate for other parents, while also explaining why and how the words and voices of Autistic people have so completely changed our lives. (I use the word ‘our’, because it is not just my life that has changed, but Richard’s and by extension both our children’s too.) I hope to illustrate the ripple effect of our actions, all of our actions and how important it is (to me) to do everything I can to change the way Autism is perceived.
I have found that in talks such as the one I am about to give, one walks a fine line between trying to share one’s personal experience and ‘lecturing’ or being seen as dictating to others how they should or shouldn’t behave. I don’t know that I’ve always gotten that balance right, in fact, as I write this, I know I haven’t. But there are a couple of points I know are universally important. Things I can do and try to do – be honest and hold myself responsible for my actions. While also being hyper aware of what Emma would say were she in the audience. Am I saying anything that would wound? Am I saying anything that might make her feel badly about herself? If she were there, would she object?
On this blog I have shared all kinds of things about my past, my personal struggles, things that happened long before I ever had children because it’s important to me that people reading this blog understand, my “issues” are not caused by my husband or either of my children. My issues are what cause me to react the way I do. It is this baggage, some of which I’ve unpacked, some of which I continue to struggle with, that cause me to trip up and behave the way I do. Neither my husband nor my children CAUSE me to lose my temper, feel sad, fearful, depressed or impatient. I felt all those things long before I was fortunate enough to have a family of my own.
When I am feeling disgruntled about my life it is not because of my husband or children or anyone’s specific neurology, it is because I have expectations that have gone unmet. Until I am able to fully embrace and accept myself, my life and everyone in it fully, I will grapple with feelings of discontentment and despair. My level of annoyance and dissatisfaction are in direct proportion to my unmet expectations. This is my life’s work. This is what I need to be vigilant about.
Given all of this, it is particularly fitting that tonight Richard and I are going to a meditation workshop with our two favorite Buddhist teachers, Ezra Bayda and Elizabeth Hamilton at the Open Center. Their lecture is appropriately entitled – Freedom From Fear: A Zen Perspective.
Nic does the NYTimes crossword – April, 2002
Emma ‘reads’ the NYTimes – 2003