Who am I kidding? I have a child with autism. Nine times out of ten, something will go wrong. And nine times out of ten, I cannot predict it, even with all the years of parenting under my belt, because autism is unpredictable. And so tantrums happen, in public, and it's like I'm sharing autism with the world, yet they don't know it's autism.
At home, autism is our world and reality. We understand it, we live it. We don't judge.
In public, I have to face my child's autism, head-on. Others have to face it, too. And people will judge because they don't understand.
Just a few days ago, someone was visiting my daughter's Young Women's class in church, and noticed she was new. This kind woman approached her and asked her name. My daughter put her head down and spoke, barely above a whisper, fidgeting with her hands and rocking her body as she said it. The woman glanced at me with a confused look, and in that moment, I thought maybe I should say something about autism. Maybe I should tell her why she couldn't understand my daughter's response. But I gave into my fears of being judged or ridiculed, and my dislike for labeling my daughter, and simply told her my daughter's name. This kind of scenario happens often, and makes me want to retreat back to my safe place where my daughter knows we understand her, where she feels comfortable talking in a normal volume.
But there are times when I wonder, while I'm out in public, surrounded by a population that largely doesn't understand autism, if I should explain it or not.
Do I tell strangers about her autism, or just remain silent?
Do I want to make her stand out by saying she has autism, or do I want her to just blend in?
Do I want others to look at her differently because I tell them she has autism, or do I hide it?
Should I label her to avoid the stares and questions, or should I trust that people will ask if they feel the need to?
These are the questions that plague me. And these are the reasons why I prefer to be home, as much as possible. No explaining autism, no stares or puzzled looks from strangers. Just peace and contentment in our safe place.
But then I think, shouldn't I go out in public more? Doesn't the world deserve to understand autism better? Why should I hide my daughter in my home 90% of the time? How does that help spread awareness? I'm doing a disservice by sheltering her here.
Home versus public. Safety versus uncertainty. Understanding versus confusion. Our precious daughter versus "what's wrong with that child?"
How do you spread autism awareness while in public? Do you tell people, or keep it a secret?
THank you for your posts. You are doing a great job : )
ReplyDeleteI understand how you feel. Funny that those are the same questions that plague me and some of my friends who have children with disabilities. I think if more business, public venues and places like churches understood the needs of different disabilities, then the general public would. It needs to be a community effort and all of us need to go out and feel comfortable knowing that the our needs can be met and everyone can be included. There is a website coming out in the spring that is going to help people find places that meet their needs.
Good luck and keep up the great work raising your beautiful children!
Wow, thanks for your kind words, Linda! They are much appreciated. I agree with you as well. It's all about understanding.
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