Ever had a moment that shakes your perspective so profoundly that you recognize how misguided you were in your beliefs? A few months ago, I attended the wake of a young child. The memory of that little one and her family lingers in my mind every day. That experience unexpectedly reshaped my understanding of autism.
I can no longer claim to fully comprehend grief. Not even close. I’ve previously written about the grieving process that can accompany the discovery of a child’s autism diagnosis, and I’ve seen similar narratives about mourning the child you envisioned, only to realize autism has altered that dream. But I realize now that my emotions are not grief. My child may be autistic, but he is very much alive. He creates chaos, plays with his favorite toys, and joyfully sings “Bird Is the Word” for what feels like the umpteenth time today.
He needs reminders to chew his food thoroughly to avoid discomfort and gentle nudges to ensure he treats our pets kindly. The sight of me reaching for the blender in the kitchen cabinet can send him into a panic. Yet, he is here with me. I can share laughter, high-fives in passing, and even sneak a kiss on his forehead while he sleeps, especially after a long day of reflecting on life’s fragility.
Sure, my life doesn’t match the ideals I once held, but whose does? The lives we see others living—the ones we sometimes envy—are often filled with their own unanticipated challenges. What I sometimes feel might be frustration, self-pity, or disappointment, but I refuse to label it as grief. I’ve come to realize that it’s an acceptance process.
To liken my situation to losing a child feels deeply disrespectful, and I will no longer do so. I refuse to mourn for a child who is still here with me. Yes, the journey demands more from me than I had anticipated or desired, but I am grateful because there are parents out there who face the unimaginable loss of a child. They are the ones entitled to grieve the life they can no longer nurture.
I’m not suggesting that others must follow my lead; I merely ask that you listen to my perspective. If your child is still with you, then you hold more treasure in your life than many others do. It’s perfectly valid to experience sadness, anger, or frustration—it would be unreasonable to suggest otherwise. My heart aches for a mother I embraced recently, who was bracing herself for a lifetime of medical challenges for her daughter, only to find herself at her child’s wake.
I’m not declaring a universal right or wrong; this is simply my journey. It’s crucial to recognize when our viewpoints shift and how we intend to adapt moving forward.
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Summary
In this article, Dr. Lisa Harrington reflects on her transformative experience attending a child’s wake, leading her to reassess her emotions surrounding her autistic child. She acknowledges that while challenges exist, she chooses to embrace acceptance rather than grief, recognizing the value of having her child with her, despite the unexpected journey.