I have been amazed to discover the many fringe benefits of writing this blog. In addition to the revelation that I find the process of writing to be cathartic in and of itself, there is so much more that I have gained from it.
I receive a constant stream of e-mails and calls from friends and family. I am profoundly grateful for the love, support, and true friendship of so many people in my life, some of them brand new to me, united by the commonality of our experience. I am blessed by all the people who have shared their own stories (turns out we’re not the first people in the history of the world to have struggled through a birthday party; who knew?) and I feel truly empowered by this newly forged sense of community.
In addition to the connections that I have made with so many other people, I also find that after I have written and organized my thoughts, I am able to learn from examining my own experiences. I find patterns in my life and my parenting that I may not have recognized otherwise. If you’re familiar with ABA (applied behavioral analysis), a common and well-respected method of teaching a vast range of skills to people with autism, you will recognize the concept of collecting and analyzing data in order to anticipate and meaningfully change behavior. One of the central methods of ABA is the determination of what are known as the ABC’s of behavior – antecedents, behaviors and consequences. These often remain hidden until you start really paying attention to the patterns of cause and effect in your environment. So by watching for these patterns in not just my daughter’s behavior, but also my own, I start to see ways that I can avoid making the same mistakes twice (OK, let’s be honest, cause by now you’ll see right through me anyway. It’s so that I can avoid making the same mistake 4 or 5 times; it usually takes at least the first 3 to find the pattern).
Taking this all one step further, I find that through forcing myself to really pay attention, I am becoming what I would call a better parent. Since I am more aware of the import of the small stuff, I feel more attuned to my children in general. I find that I am more ‘present’ when I am with them because I’m looking for the lessons in every experience. Sitting with the girls at the dinner table last night, I asked Brooke who her favorite teacher is (her beloved Joanie, of course). Katie then asked me who my favorite teacher is. Without hesitation, I told her that I had two – her and her sister.
So, thanks to this heightened awareness, I saw the morsel of joy that I might have missed when I carelessly hit the button on the coffee grinder with my elbow a few days ago. Doesn’t sound like a big deal? Let me explain. To the mother of an autistic child with sensory integration disorder and extreme auditory defensiveness (this is why you often see autistic kids covering their ears) an errant coffee grinder is tantamount to an all out siege on the house. Think of standing in the middle of a roomful of fingernails on chalkboards – hundreds of them – all at once – oh, and you’re blindfolded, so you have no idea what’s happening. It’s something like that.
It made that awful whirring noise that a coffee grinder makes, and Brooke panicked, and ran to me, then away from me, then back to me, then clung to my leg like a frightened koala, then perseverated on that heartbreaking hooting noise that she makes that sounds like a frightened owl, then dug her fingers into my leg, then ran in a circle, then ran back to my leg, then managed to catch a ragged breath while crying and shouting ‘I don’t want to play with my bristle blocks!’ and I was able to find something to celebrate. No, seriously. Bear with me.
She looked up at me with her beautiful little tear streamed face and said, ‘The noise made me scary.’
OK, so the grammar was a little lacking, the syntax a little off, but let me make this clear. My daughter told me how she felt. She explained to me why she was upset. She found and put together the words to convey quite clearly what was causing her distress. This was a HUGE moment. And I am not ashamed to say that I am so damn proud, not just of her, but also of the fact that I recognized it and celebrated it in the midst of the previously awful scene.
I scooped her up in my arms. I whirled her around in a dizzying celebratory circle and I praised her up and down. And you know what? It made her smile. Heck, it made her laugh. And I laughed, and Katie laughed and came in from the den and joined into what was now a joyful chorus in the kitchen of ‘Great job, Brooke! We’re so proud of you!’
I once read this amazing letter on Autism Speaks. I am so terribly sorry that I don’t know the author’s name, as I’d love to give her credit here. It was written by a mom of a non verbal teenage son with autism. She told an incredibly touching story about her son reaching out to communicate with her and in it she said the following:
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.” I will forever be grateful for those words. I keep them taped to my computer at work and I knock myself over the head with them when I forget how much the baby steps mean. In that moment in the kitchen, I saw a miracle.
And then I unplugged that damn coffee grinder.