Have you ever experienced a moment that completely shifts your perspective? Two months ago, I went to a wake for a child, and even now, I find myself reflecting on that little girl and her family. This experience unexpectedly changed how I view autism.
I’ve come to realize that I don’t truly understand grief. While I’ve previously written about the grieving process that can accompany learning about your child’s autism, I now see that my feelings are quite different. Many have discussed mourning the child they believed they would have, suggesting that autism has taken away that life. However, I’ve learned that I am not grieving—my child is here. He’s making a delightful mess, playing with his toys, and singing “Bird Is the Word” for the umpteenth time today.
Yes, he requires numerous reminders to chew his food properly to avoid gagging. He occasionally teases the dogs, and he gets frightened at the sight of me opening the kitchen cabinet where the blender is stored. But he is present in my life. I can laugh with him, share songs, and sneak into his room at night to kiss his forehead as he sleeps soundly.
Sure, life hasn’t turned out as I imagined, but whose does? The lives we see and sometimes envy are often not what they seem. Everyone faces their own challenges, and while I may sometimes experience self-pity or frustration, I refuse to label it as grief. I no longer want to use that term in connection with autism. Instead, I see it as a journey of acceptance.
It feels disrespectful to equate my situation with that of someone who has lost a child—something I will no longer do. I will not mourn for my son because he is still here. Yes, parenting him involves more effort than I ever anticipated, but I am thankful for that opportunity. Some parents face the heartbreaking reality of losing a child; they are the ones who truly have the right to grieve and mourn for the life they can no longer nurture.
I’m not imposing my beliefs on anyone else; I’m simply sharing my perspective. If your child is still with you, you possess a wealth that others may not. It’s natural to feel sadness, anger, or frustration with your circumstances—those emotions are valid and should be acknowledged. Recently, I embraced a mother who was bracing herself for a lifetime of medical challenges for her daughter, only to meet us at her child’s wake. That experience deeply resonated with me.
I’m not here to define what is right or wrong for anyone but myself. You may agree with my thoughts, or you may not, but it’s crucial to recognize when our perspectives need to evolve.
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Summary
In conclusion, my perspective on autism has shifted from one of grief to acceptance. I now understand that while my child may require more support, he is here and thriving. Recognizing this allows me to appreciate the life we have together rather than mourning for what might have been.