“Some days are diamonds,
Some days are rocks.
Some doors are open,
Some roads are blocked.”
Since childhood, I’ve enjoyed Tom Petty’s music. The words above are lyrics to one of my favorite songs, “Walls.” Admittedly, they resonate on a much deeper level on days like today... days when autism wins.
All parents with a child on the spectrum know that the potential for turbulence is always lurking just beneath the surface. Through experience, we become more in-tune to warning signals from our children that are nearly imperceptible to others. On good days, we are able to intervene and diffuse the situation. Not all days are good days, though. Some days leave us feeling depleted, and even worse, helpless. That was today, for me.
Piper’s progress has been significant and steady as of late. In retrospect, that things have almost been going a little too smoothly should have provided some foreshadowing that trouble was brewing. We celebrate her victories and accomplishments with fervor, as we should. She has worked so hard! The flip-side is that celebration often comes with a cost. Floating on cloud nine means that when the bottom falls out (and it will, repeatedly) you have further to fall. And you feel every extra inch.
From the moment she got up, this morning, Piper was displeased. When we told her she could not eat a fourth orange yogurt for breakfast, her temper flared, and she just couldn’t quite shake it off. I wonder if she stewed about it all day, because when my husband picked her up from school, she mentioned the yogurt before she even said hello. (Okay, that was actually kind of humorous!) At bedtime, when her favorite pajamas were in the washing machine, she crumbled. I offered her a choice between several alternatives, which she promptly threw across the room. Soon, she was stiff and screaming. Things only got worse when she finally got into bed, only to realize that one of the approximately 46 critters she sleeps with was missing. We tore her room apart, to no avail. She was upset about the toy. She was in a frenzy again about the pajamas. I told her I loved her, and she pushed me away and said, “No.” I tried to sing her our song, and she pushed me away again. I said goodnight and got up to leave the room, and she cried harder. It was just one of those days where nothing I had to offer was good enough. As I closed the door behind me, still hearing her cry, I realized that today, autism won.
One of the hardest things about these turbulent episodes is that I know she is not just acting out to give me a hard time. She is acting out because she is having a hard time. She is hurting, and there is nothing I can do to make it better. I know she will work through it, but in that moment, I feel like I am inherently failing my child and it is painful. The only option, at that point, is to buckle my proverbial seatbelt and sit through the turbulence with her.
To the mom that got slapped in the face tonight when all you wanted was a hug, I see you.
To the dad who took the time to make your child a special dinner, only to have it pushed aside for another yogurt, I feel your sadness.
To the parents who look sadly at each other as your child writhes on the floor in a fit of despair, my heart hurts for you.
Even after being slapped, Mom, you gently told your son you love him. Your soothing voice and kind words were still the last thing your child heard before he drifted off to sleep. Dad, even after your effort to provide a good meal for your daughter was rejected once again, you made sure she didn’t go to bed hungry. Mom and Dad, you shared a painful moment as your child sat there between you, inconsolable. But you weathered the storm with her. When things began to calm down, you sat with her and comforted her until she finally went safely to bed. You were present. None of you gave up when everything inside you wished you could.
For all of you, just like me, who ran out of secret weapons, autism won today. But please know that you didn’t lose. You showed your child that they can count on you, even when things get out of control. You made it through the turbulence together, providing a safe outlet when it was needed the most. I know it doesn’t feel like it now, but every time autism wins, you win, too. Tomorrow, you will be stronger.