Please don’t be scared of her, she is just a little girl.
She needs to touch everything because that is how she roots herself in the world.
When she doesn’t look at you when you are speaking, it isn’t because she can’t hear.
It also isn’t because she doesn’t like you.
Telling her she is pretty is not going to make her less Autistic.
It’s ok, I am not sad about Autism anymore and she never was, so you don’t need to make a sad face.
I want you to know that I am grateful every day to be her mother, but that doesn’t mean I am an unusually good person. She is my child, we are in this together, we are learning and trying, growing and changing. I used to plan that someday I would dance at her wedding, now I recognize that those kinds of plans are a gift that makes you feel sad. Now I plan small. I take life in careful bites. I savor the good moments and try and let the bad ones not break my spirit. Autism has taught me that a life is not a series of accomplishments or degrees from fancy schools. Life is about waking up every day and beginning again.
When my children were learning to ride bikes this is the mantra we would repeat for them. In the videos of their first successful two wheeler rides you can hear them whispering to themselves, “push, balance, steer, push, balance, steer.” It became the magic words that propelled them onto two wheels.
I hear it in my own head when I feel like I am on shaky ground. It has become my own mantra, my own magic formula for reminding myself what I really need.
Push: We need to apply effort in our lives. Some days the effort can be just getting out of bed. It requires effort to sit down and meditate every day, or go to a yoga class or exercise. Even being polite especially to those we love most can be an effort. Sometimes, it is the effort of not listening to our own defeating chatter, or doing something that scares us. If you push too fast or far, you will fall, but if you don’t push at all you won’t ever move forward.
Balance: We all use the word, I am not sure we know what it means. To me balance means mostly follow the rules, but maybe break them a little every day. Balance means sleeping when I am tired, and eating when I am hungry, snuggling when an opportunity presents itself, and taking every chance I get to make sure I am plugging in to my life. Balance means showing up to the people who care about me, including myself. The road underneath me is always changing, balance means not thinking it will all be smooth and flat.
Steer: Being in the moment does not mean that there is no plan for tomorrow. We need to steer ourselves along a path. We don’t meditate to become awesome meditators. We meditate to become better human beings. We shouldn’t do yoga so that we can be at the front of the class in tight pants balancing on our noses. We should do it so that we are connected to our breath and body. We shouldn’t just fill our lives and hearts with people to avoid loneliness. We should fill our lives with relationships that uplift and encourage us. When we are steering ourselves in the right direction anything is possible. When we aren’t we end up on our asses by the side of the road.
Push, balance, steer, push, balance, steer, push, balance, steer….When you feel yourself wobbling, say it a few times, and you will be back on the road in no time…
On any given day, I am a chef, a maid, a chauffeur, a doctor, an engineer and very often a UN peacekeeping force, and that can be before breakfast. I am exhausted and empowered by the number of problems I solve every day. Having three kids, one with special needs can mean that I have to remember both the pythagorean theorem to help B with his homework and try and figure out why M is banging her head…..concurrently.
I really believe that we have the power to shape how we feel about things. There are certain facts of my life. I have a child with really significant special needs, I have a curve in my spine that were it straight, I would be two inches taller, which would make me skinny. I curse a lot. Sugar is the one wagon I can’t stay on. Despite my best efforts, I still want to be cool. My hair is getting gray really fast. I was not grossed out yesterday when I said to one of my children “please don’t pick your nose at the table and eat it.” I am who I am, I admire women who are elegant and glamorous. Instead I am the kind of woman who often accidentally spits while speaking.
One thing that has always been true about me is that I am an optimist. In the days and weeks after my daughter was diagnosed with autism I found myself profoundly sad, it rested in my bones. I worried that I would never feel like myself again, I missed myself. I was serious all the time. I went to bed reading medical textbooks, and spent my days in doctors’ offices. I longed for fart jokes, or for some sense of lightheartedness to return to our lives. I thought it never would.
I was wrong, it did. One morning, I woke up and felt a little bit like my old self, and gradually the rest of me came pouring back. I now know that while an obstacle itself may not be a choice, my response to it can be. I never expected to have a child with whom I couldn’t speak, but I cannot let it break my heart. I wake up and know that I will be faced with lots of opportunities for perspective. Sometimes I succeed and make a difficult moment into an easy one by taking a couple of deep breaths and just moving forward. Other times I unleash a string of profanity and feel sorry for myself. Each moment is a chance to be honest about who I am and show up for the people who need me. Life does not always lend itself to joy. Joy is a choice and we can make it every day, and on the days we don’t, we can forgive ourselves and move on.