Parenting
Updated: November 9, 2015
Originally Published: April 13, 2011
Let me share something with you. While I may not see, touch, or feel you in the traditional sense, I’ve been observing you closely for a decade. You are a puzzle—an enigma that confounds educators, therapists, coaches, and even bus drivers. You perplex me too, yet I feel I know you possibly better than I know myself.
You are the illusion, the smoke and mirrors. You are the last one standing in a game of dodgeball, nimbly dodging until everyone else gives up and heads home. You are the feline that demands melatonin to achieve even a few hours of sleep. You are the serpent of anxiety, twisting around my child’s spirit, whispering irrational fears about dogs and the cold.
You are the thief trying to take my son away from me. You are Autism. And I can’t help but say it—I truly dislike you.
That’s right, I said it. Autism, I dislike you.
I dislike the way you make him touch every piece of food and dip his fingers in every glass of milk before he can take a single bite. I dislike that he avoids sports because of you. I dislike how isolating you make him feel. I dislike the way you force him to struggle for words while others glide through conversations filled with humor, irony, and language.
I hate that his mind is always racing, obsessing over maps, music, and even the history of strawberry jam. I want to scream at you to leave my son alone, to allow his mind a moment of peace. After all, he doesn’t even like strawberry jam.
And what about his body? Why can’t you let him be still? Watching you manipulate his arms, legs, and hands—making him stim and jump through every room—feels like seeing a puppeteer tugging at strings.
I dislike how you make me feel. With you around, I feel exhausted, confused, and inadequate.
Recently, our family of seven took a trip to visit my sister in Connecticut. I’m sure you were there, lurking in the back seat. For most of the two-hour journey, my son sat in the second row of our minivan, demanding we play the same three songs repeatedly at the exact volume. If it wasn’t just right, he screamed in frustration. You drove us all to the brink.
Here’s a little secret: when I’m feeling overwhelmed and lost, I retreat to our bedroom and cry. I sit in my favorite chair by the window, tears streaming for the boy who longs for independence but may never have it. I cry for the boy who dreams of graduations, playdates, and baking cakes, even though at ten years old, he struggles to grasp the concept of money.
You and I are in a constant battle, each holding one of his hands—me pulling him toward a world of diplomas and future opportunities, while you drag him back into a dark abyss of confusion.
About an hour before we arrived at my sister’s, you loosened your grip, allowing him to drift off to sleep. I felt a wave of gratitude as I saw his face relax, his breaths steady. Yet, just ten minutes from her house, you returned with full force.
“Why is the radio off? Where are my songs? Turn them on!” he shouted. “The dogs! I don’t want to see them!”
“Jack! You’re not scared of dogs anymore, remember? We have a puppy now!” I replied.
But you wouldn’t let it go, would you, Autism? You held onto him tightly.
“No dogs! No dogs! Put them away!” my son cried in his unique phrasing.
After a couple of hours at my sister’s, we were both worn out. I had a headache, and I could feel you sitting beside me, watching as the kids played and opened gifts. But for the first time that day, we both released our grip on him.
While slumped on the couch, I noticed her dog, a big chocolate lab with a graying muzzle, lying peacefully on the floor. I watched as my tall boy carefully navigated around him, then decided to plop down right next to him with a sigh.
In that moment, I realized that while I can’t escape you, I can’t live without you either. I know you won’t vanish, and neither will I. Autism, believe me when I say I won’t just walk away.
Sitting there, I thought that maybe, just maybe, we could find a way to coexist—tentative friends, if you will.
I can almost hear you chuckling now, a Cheshire Cat grin on your face, because deep down, you know that I could never truly hate you. Because, in this complicated tug-of-war, I too find myself pulled in two directions.
For all the rigidness and loneliness you inflict upon him, you also give him a sense of humor, charm, and intelligence. In your own bizarre way, you help make him whole. To love him is to accept you as well.
And oh, how I love him! Occasionally, I mourn for the boy who might have been, but every single day, I celebrate the boy he is. I smile, laugh, and love fiercely.
I know who you are. You are the unexpected joke at the dinner table, the quick hug from behind, and the first bite of cake made with care.
“Mom, look! I decorated this cake all by myself!” he beams.
You represent opportunity, risk, and hope. You are progress. You are my ten-year-old son in a red turtleneck, his arm wrapped around a gentle dog.
You are Jack.
In peace and friendship,
Jack’s Mom
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Summary:
In this heartfelt reflection, a mother expresses her complex feelings toward autism, recognizing both the challenges it brings and the joy it allows her son to experience. Through vivid imagery and personal anecdotes, she portrays the tug-of-war between her desires for her son’s future and the reality of autism. Ultimately, she embraces the duality of their experience, finding acceptance and love in the journey.