Hey there, Autism. I know you’re there, lurking in the shadows of everyday life. Though I can’t physically see you, I’ve been wrestling with you for the past decade. You’re an enigma that leaves teachers, therapists, and even bus drivers scratching their heads—and you’ve got me stumped too. Yet, in some twisted way, I feel like I know you better than I know myself.
You’re like smoke and mirrors, a master of illusion. You’re that last kid in dodgeball who dodges every ball thrown their way, making it impossible for everyone else to play. You’re the panther who insists on melatonin as the key to a mere six hours of sleep each night. You’re the cruel snake of anxiety that wraps around my child, whispering fears about everything from dogs to wind chill factors. You’re the thief trying to take my son away from me.
Yes, Autism, I’m saying it loud and clear: I hate you.
I hate how you make him touch every piece of food, dipping his fingers into glasses of milk before he even takes a bite. I hate that sports are out of the question because of you. I hate the loneliness you impose upon him. I hate how you make him search for words while the world rushes by in a tide of jokes and conversations he can’t quite grasp. His mind races from maps to music to the history of strawberry jam, while I just want to shout at you to leave him alone for a second of peace.
And what about his body? Why can’t you allow him to be still? Watching you control his movements—making him stim, jump, and grunt through the house—is like watching a puppeteer pull the strings.
You make me feel anything but competent. With you around, I’m left feeling exhausted, bewildered, and in over my head. Just last week, our family of seven took a trip to visit my sister in Connecticut. And you were undoubtedly there, making your presence known.
For nearly our entire two-hour drive, my sandy-haired son sat in the back of our minivan, demanding we play the same three songs on repeat at the exact same volume. If it wasn’t the right song, at the right time, he’d shriek like a banshee. You drove us all nuts!
But here’s a little secret: when I’m overwhelmed and lost, I escape to our bedroom, plop into a big leather chair, and I cry. I cry for the boy who dreams of independence yet may never attain it, who wants to graduate, have playdates, and even open his own bakery—despite not quite understanding money at just ten years old. I cry for his innocence and for the boy who might have been.
You and I engage in a constant tug-of-war. I pull him toward a future filled with diplomas and adventures, while you drag him back into a spectrum filled with uncertainty.
About an hour before we arrived at my sister’s, you finally loosened your grip, allowing him to sleep. Seeing his face relax and his breathing steady was a relief. But, just ten minutes away from her house, you struck again, waking him with demands about the radio and an aversion to her dogs.
After a couple of hours at her place, you were still there, resting heavily on my shoulders while the kids played, danced, and opened gifts. I could feel your presence, lurking beside me, but surprisingly, we both took a moment to let go of his hands and breathe.
Then, I noticed her dog—a big chocolate lab—lying in the middle of the living room floor. To my astonishment, my son cautiously stepped around him, then over him, before finally plopping down beside the dog with a sigh of relief.
In that moment, I realized something crucial: while I might not be able to escape you, I also can’t live without you. I’m not going anywhere, Autism, and I hope you know that I won’t just give up and throw in the towel.
Sitting on that couch, I contemplated the unlikely friendship we might forge. You’re probably smirking in your corner, thinking you’ve got me figured out. But here’s the truth: as much as you challenge him, you also bring out the best in him. You make him quirky, lovable, and undeniably charming. In your own bizarre way, you help him feel whole. To love him is to accept you too.
I won’t deny that I sometimes mourn for the boy who might have been, but every single day, I find joy in the boy who is. I laugh, smile, and celebrate him, and you are part of that journey.
You are the unexpected punchline at dinner that catches everyone off guard. You are the heartwarming hug from behind and the first bite of rich chocolate cake. “Mom, look! I did the frosting all by myself!”
You represent opportunity, risk, and endless potential. You are the smiling face of my ten-year-old in a red turtleneck, casually draping an arm over a gentle dog.
You are Jack.
In peace and friendship,
Jack’s Mom
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