Well, after making it sound like I live in a war zone I really should say why I love what autism has brought to my life. Years ago, when I had an inkling that my life as a parent would be somewhat different than I expected, I plopped myself down at a friend’s kitchen table, and said “I don’t want this to change me; I don’t want to become angry; I don’t want to become the kind of parent that other parents avoid.” Well of course it did change me and there are moments when I am angry and there are parents who avoid me, but I know all of that would have happened anyway, regardless of whether I had a special child or not.
But what I didn’t know was that my life would have more texture and incidental joy than I could ever imagine. That my child brings as much joy to others as we give love to him, that for every unexpected thing he does we learn something unexpected about ourselves. We learned that it is impossible to parent any two children in the same way, that consistency is not about rules but about stability. That believing what you say is just an important as the words you are saying. That children often teach each other better than adults teach children, and that there are some children you can parent instinctively and other children that you have to seek help to learn to parent them well. I have been quicker to understand and slower to judge, but less tolerant of those who might be quick to presume they understand me.
I learned to think in pictures, that emotions are a language unto themselves, that I can listen and speak with my eyes, and the practical value of being able to memorize dialogue from movies and TV. I’ve learned the hidden language of touch, and that each person speaks it differently. I’ve had spoken conversations for hours and gotten nowhere; I’ve made months of progress in a few moments of holding hands. The two most important things in life are sleep and a sense of humor, followed closely by coffee and the internet. With these things, I have found ways to help my family, stay connected with people I love, and found my way back to being the person I always hoped I could be.
When I look out from my life at the lives of others, I don’t see people who have it better than me – I see some people who think they have it better than me. Everywhere I turn, people are still having mid-life crises, still worrying about their kids, still dealing with their parents (living or dead), still searching for something. Sometimes I think people manufacture problems out of sheer boredom. So, even as I struggle to create balance in my life, I am acutely aware of what I have and the bounty of my blessings. Autism has given me the freedom to do what I think it right because there is no map for this life – I looked everywhere and I asked everyone and nobody knows. That’s the gift: the challenge of unraveling the mystery, of being able to write about it, of finding those marvelous people who speak our languages and who are on a similar journey, and who are laughing all the way with us.
I can relate to your insights in this post. My oldest has Sensory Integration Dysfunction. When he was younger, lights, sounds, and crowds were particularly overwhelming to him. His clothes even hurt him and he had to wear his “comfy” clothes (white Hanes T-shirt and polyester pajama pants) all the time. I learned so much about myself and life through him – that no matter how much research you do, you may not find the answer for that one moment in time (or ever will). But, the experience still shapes you and you end up growing from it.