What it Means to be Human
Friday afternoon. I feel drained. A week’s worth of non-stop parenting and homeschooling, and I’m tired. I’ve just finished feeding Jack; breaking chicken and carrots and noodles into small bits, lifting the spoon to his mouth. He opens his mouth, keeping his eyes on the Caillou video to distract himself from the sensory and motor difficulties of eating. After Jack finishes dinner, he runs off to bowl with his toy ball and pins. I’m exhausted. I sit down in front of the computer, looking for my own distraction before I clean the kitchen.
I scan an article on sleep disturbances. It tells me that parents simply need to establish sleep habits with their kids. Meaning if my child doesn’t sleep well, it’s my fault. Meaning, sleep disturbances in my child are merely behavioral problems. Never mind that sleep disturbances are actually part of the neurological problems associated with autism. Experts blame me. I click the window closed, feeling annoyed.
I rest my chin on my hand; reminded of words I’d heard days before. “The most important thing you should be doing …” “What he needs to learn …” "If he’s ever going to get a job or have friends … "
Well-meaning advice. From people who care. But whose underlying message is that I’m not doing my job as a parent. That if my child grows up and experiences challenges, then I failed at teaching him the “right” things.
My attention is broken suddenly, drawn out of my thoughts by my child’s shouts. He’s yelling angrily, banging his plastic bowling ball on the wooden floor. I have only minutes left.
I page down quickly through more links, more posts, searching for a minute of inspiration, of someone else’s strength to give me a boost so I can make it through the rest of the evening. From afar, I hear pounding footsteps as I’m frowning at the screen, considering the next link. Before I can draw my eyes from the screen, my neck is yanked, pulling my hair and twisting my head to look at my child.
“MOMMY, YOU HAVE TO WATCH!”
Tears sting my eyes. The yank hurt, the yell hurt, and I’m exhausted. It’s not my child’s fault. He’s exhausted, too. It’s the end of the day. He has no more energy left to regulate his body or his emotions. It’s just the end of a very long day.
I know all this, yet still feel hurt. In that moment, I feel that people aren’t hearing me. I wish they didn’t blame me. I wish they didn’t blame it on behavior. And I wish they knew how intense it is to parent my child. I wish they got that, really got it.
What is it I think would happen if people truly understood the intensity? Do I think they would support me? Soothe the hurt? Stop trying to fix me, or my child? Do I think they would stop blaming me for my child’s challenges?
Or would they blame me again for feeling the hurt? Would they tell me I just needed more sitters, more ‘me’ time, or more therapy?
When I describe this moment of hurt, I would like for people not to try to fix me, or my child.
I would like them not to blame autism, my parenting, or my child. I would like it if people didn’t think in extremes; either mythologizing autism as tragedy or dismissing my feelings as a consequence of poor parenting or poor self-awareness.
I would like people to realize that no matter what any of us do, we all have moments of hurt.
I would like us to be able to see ourselves in someone else’s hurt – without making it tragic or dismissing it as invalid – so that we can allow each other the dignity of being human. Because it is these moments of hurt or joy that are what we have in common.
Allow each other that moment of hurt. Give each other the dignity of being heard. Connect with each other in spite of our hurt. In spite of our differences. That is what it means to be human.
Brenda Rothman is a writer, public speaker and activist, with a background in health law and rhetoric. Her son Jack was diagnosed with autism in 2007. Since that time, she has advocated for autism support in front of legislators, professionals, and the autism community. Brenda lives in Atlanta with her husband and son. Please visit her amazing blog, Mama Be Good.