Moms, dads, grandparents and caregivers everywhere, let this serve as your official warning: If I am out in public with my little girl, and she begins to “act out” in a way that is foreign to you, I will quickly initiate that awkward conversation.
I will say the words to which you might not know how to respond.
I will meet your gaze, and tell you that my daughter’s name is Piper, and she has autism. I am that mom.
Please don’t mistake my intentions. I will not initiate that conversation to make excuses for my child any more than I will utter those words with the intent of backing you into a corner. My goal will be quite the opposite. I’ll tell you that she has autism to open the door to reciprocal conversation. I’ll want you to know that as my reality plays out before your eyes, it is ok to ask questions. I will tell you her name to make her “real” to you, and not just some child having a meltdown in a parking lot, or on a playground.
I will tell you as little or as much as you care to hear. I will tell you autism is different for every child. I will tell you that the behaviors Piper is exhibiting that may seem odd to you (like continuous spinning or repetitive actions) are actually helping to ground her in a situation that is beginning to feel overwhelming. I may even get personal, if the conversation leads that way, and tell you how painful it is when people choose to look away, as if she and the moment she is experiencing don’t exist at all. Because when it comes down to it, regularly-averted eyes and silence hit me with a much greater force than any words someone could speak out loud. Even if words are hurtful, to the person speaking them, Piper still exists.
As I said before, I am that mom. I will tell you about Piper, if you’ll let me. Perhaps we will have a meaningful conversation. That is my ultimate goal. Even if you don’t know how to follow up to what I have told you, and you change the subject or move on, maybe I will have given you something to think about later. Maybe you’ll look up some information about autism in your down-time, and the next time you find yourself in that situation with another mom like me, you’ll feel more comfortable reaching out. Maybe the information you find will enable you to give an informed answer to your own child when they as you why my daughter was acting that way. As long as a door opens somewhere as the result of my words, awareness will have spread a little bit more.
I seek to spread autism awareness, because it is key to the future of children like Piper. The little conversations you have with your children about her, and others like her, will shape how she is viewed and treated by her peers. This has a direct impact on self-esteem, especially in social settings, which can be most challenging for anyone on the autism spectrum.
My experience as the mother to a child with autism has taught me that sometimes people just don’t know what to say, and other times, they just don’t know if it’s ok to ask questions. By initiating a conversation that might feel awkward to you, I am giving you my permission (practically begging you, as a matter of fact) to ask away. I am an open book, and Piper’s story is still being written. If, in response to what I say to you during a brief encounter, you step out of your comfort zone and learn, this gives you the power to help write a positive chapter somewhere in her story. Just by learning, you have the opportunity to positively impact a life. What could be more rewarding, for either of us?
Follow this journey on my personal blog, Driving The Strugglebus.