Autism and grieving: It’s okay to grieve

This is a snippet from my book, All Across The Spectrum. You can order on Amazon as a Kindle or Hard Cover version —> here. 

Autism and grieving: It’s okay to grieve

When my therapist said those words, “It’s okay to grieve,” I felt like a weight had been lifted off my shoulders. The guilt that had been torturing me for years started to fade away. My feelings were normal, after all. Dr. Robble explained that all the parents of severely autistic children she sees have similar feelings. They feel powerless, defeated, frustrated, and depressed. I’ve felt all these emotions. I’d kept them to myself for a while because I was ashamed of feeling this way. I was afraid to admit these feelings, even to my husband. I love my little boy, my Charlie, so the sadness that engulfed me at that moment was confusing. For a long time, I buried it. I never mentioned it, particularly on my blog knowing there, I’d be open to criticism. People on the internet were already critiquing me, so sharing that I was grieving the child I thought I was going to have would have been like offering myself up on a silver platter.

The truth is that raising a nonverbal autistic child is emotionally draining. I wish I could say that I was strong enough that Charlie’s severe impairments didn’t affect me, but I’m not. It breaks my heart to see Charlie struggling daily. It’s hard for Charlie, who can’t communicate beyond basic needs such as “I want water,” but it’s also hard on us, his parents. When Charlie was diagnosed, many dreams went out the window. My expectations and everything I’d imagined doing with my child were gone. I once dreamed about having philosophical discussions with Charlie and long talks about soccer, outer space, and life in general. I now long to hear him call me “mommy” or say “I love you,” purposely, even once.

Besides very basic needs, which he conveys using an app on his iPad, Charlie cannot make himself understood. It’s like that recurring nightmare where you’re in danger, and you’re screaming with all your might, but no sound comes out. I used to have that nightmare all the time as a child. That feeling of powerlessness is paralyzing. I wonder if sometimes Charlie feels powerless. As his mom, it’s my job to protect him and I want to make things easier for him, I want to help. I want to fix his inability to communicate. I don’t want to fix him. I want to fix his broken voice. I wish someone would invent some brain decoder that would allow me to understand him and make it all better because that’s what moms do. We make it better. But I can’t. Grieving something means realizing you can’t change it. I’m grieving my inability to encourage my child’s development like other mothers can do.

When Charlie needs something and I’m unable to understand what it is, I feel powerless. I usually spend a few minutes showing him various objects and food items around the house in hopes that he’ll want one of them. When I’m wrong—and that happens often—he gets frustrated.

Cereal? Pushes it away.

Juice? Pushes it away.

Toast? Pushes it away.

Yogurt? Pushes it away.

You can feel the intensity of our growing frustration as I fail to comprehend what he wants to eat. He gets infinitely more impatient with each wrong guess. The restlessness, the grunts, and then the quiet whines. Believe me, Charlie. I’m trying as hard as possible to get you what you want, but I can’t because I don’t know what it is. Eventually, we’ve exhausted all our options, and this is usually the moment when tears slowly start rolling down his face, and he resorts to screaming. I feel sad and frustrated, too. And once again, powerless. Once we’ve reached that point, there’s nothing else I can do. I’ve failed, and now we have to wait. I wait until I hear the silence. Not the kind of silence you want to hear. It’s a silence full of tension. A silence that means that Charlie has given up because that’s the only thing he can do. No matter how hard he tries, he can’t communicate, and he can’t make himself heard. The only thing he can do now is surrender.

Still, I love Charlie. All of him. The way he is. I simultaneously don’t want to change him and do. I’m not grieving him. I’m grieving my dreams of him. I’m grieving my dreams of Charlie as a seven-year-old sitting beside me outside at sunset, debating which Pokémon is a better starter option in Pokémon Blue. I’m grieving my youth, the naiveté that led me to believe that all moms get to hear their children call them mommy in a purposeful way, the innocence that tricked me into believing that all children love and cling to their parents. I’m grieving the dream of speaking French with Charlie and secretly laughing at the first putain he pronounces. I’m not grieving you, Charlie. I’m grieving my dreams.  

 

A snippet of some of the responses I got from Neurodiversity advocates ake #ActuallyAutistic since posting this. What’s so horrible about autism and grieving? Grieving your dreams? What’s so horrible about not wanting your child to struggle and put himself in danger constantly?