ROCK ON: A Caregiving Story
By JB Brown, Autism Society’s First Responder Program Manager
Story published by the Autism Society of America: https://autismsociety.org/rock-on-a-caregiving-story/
This story is one that some of us know all too well. One that’s as heart-wrenching as it is uplifting, as lonely as it is rewarding, and as challenging as anything life has to offer. This is a story for caregivers and about my son Wyatt, a beautiful soul with Autism, and a penchant for headbanging that would put any rock star to shame.
The struggle, as they say, is real. Caring for a child with high support needs is like running an obstacle course whilst being blindfolded. There are sleepless nights, endless appointments, and the ever-present anxiety and guilt that comes with questioning if you’re doing enough, or if you’re doing it right. The panic of schedule changes, taking an unanticipated turn in the car, or simply trying to leave the house at all. I’m not only his caregiver, most days I feel like his doctor, advocate, teacher, or the only person in this world who can truly see his brilliance. And then the headbanging—an act of frustration, pain, or sensory overload. Watching your child hurt themselves is a torment I would not wish upon my worst enemy.
There’s a feeling of isolation that compliments being the caregiver of a child who cannot speak to you. It’s not an experience you can convey to friends or family. I fear there are days when my son feels like he is navigating a vast, unfamiliar ocean all by himself. On those days, no matter how close I get to him, we can’t show each other the way home.
But if you listen, there’s beauty in that silence. Wyatt, in his own way, speaks louder than most. His eyes, his gestures, his tones, the way he holds my hand—these are his words. It is a language without grammar or syntax, but rich with meaning and intense purpose. He’s teaching me a new way to read the world, one glance at a time.
Maybe this is my own diagnosis speaking, but there is something inherently absurd about life and I find when I embrace that absurdity, it can be incredibly liberating. So, I laugh at the absurdity of it all—the bureaucracy of education, the unsolicited advice from well-meaning parents and strangers, and yes, even the headbanging, because sometimes all you can do is laugh, and laughter has always been my weapon of choice.
Wyatt’s laughter is the purest sound I have ever heard. When I see him take his siblings’ hand to show them a new discovery in the backyard or simply lead them to his room for their own time, it’s these moments that make the struggle less real, these moments are momentum that move us all forward.
Wyatt has taught me more about resilience than any other experience in my 42 years on earth. His ability to navigate a world that isn’t designed for him, to find meaning in things that I can’t hear or see, and to persevere over constant physical and emotional challenges, it gives me so much pride as a father. And in caring for him, I’ve discovered a well of strength in myself that I never knew existed.
So here I am, a caregiver, a dad, and an aspiring optimist. There is no end in sight, but I wouldn’t trade this experience for anything. Wyatt has taught me about love, patience, and connection more than any other philosophy or experience ever could. And for that, I am eternally grateful.
Maybe you connect with this story, maybe, I hope, you feel less alone. We have each other, and we have our incredible loved ones who write the music. We only need rock on!
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Are you a caregiver for Autistic individuals looking for mental health and respite support services? Check out our health & wellness landing page to learn more.
Autism Society of America Health and Wellness Page
Caregivers and the Work-Life Balance LOL by John Brown
Join Chris Banks, President and CEO of the Autism Society of America, along with guest speaker Shaina Purser as they discuss National Caregivers Month.
National Caregivers Month Video
Social Narrative for Dealing with Anxiety and Depression
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