Charlie is almost seven. He’s severely autistic.

The truth is that raising a nonverbal, autistic child is emotionally draining. I wish I could say 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. All of 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 and outer space and just life in general. I now simply long to hear him call me mommy or say “I love you,” purposely, even just once.

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Besides very basic needs, which he conveys using an app on his iPad, Charlie is unable to make himself understood. It’s like that recurring nightmare where you’re in danger and 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 himI 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 kind of brain decoder, something 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 are able to do.

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

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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 I can 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.

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I’ve failed, and now we just 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 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 the dreams I had of Charlie as a 7-year-old, sitting next to me outside at sunset, debating which Pokémon is a better starter option in Pokémon Blue. I’m grieving my youththe naiveté that led me to believe all moms get to hear their child call them mommy in a purposeful way, the innocence that tricked me into believing 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.  

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Eileen Lamb

Eileen Lamb, author of "All Across The Spectrum" and founder of The Autism Cafe, is a writer and photographer. Born in France, she now lives in Austin, Texas with her husband and two sons, Charlie (6) and Jude (3). On her blog, she shares the ups and downs of raising a severely autistic child while being on the autism spectrum herself. In her free time, Eileen enjoys daydreaming, wine, and road trips.

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