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