Autism

Autism parents: It’s okay to grieve

autism autistic grief eileen lamb theautismcafe grieving all across the spectrum

This is a snippet from my book, All Across The Spectrum. You can pre-order here

Autism: 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 in 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. 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.

autism autistic grief eileen lamb theautismcafe grieving all across the spectrum

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 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 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 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 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. 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 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 the dreams I had of Charlie as a seven-year-old, sitting next to 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 child 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.  

 

Responses I got from Neurodiversity activists since posting this. This is cyber-bullying.

 

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10 Comments

  • Reply
    Emily Taylor
    2019-05-07 at 8:54 PM

    I can totally relate to this post. Even though my daughter can speak, she is echolalic and has difficulty expressing what she really means. Special needs parenting is hard and we do grieve dreams. It’s human nature despite what those on the outside looking in believe. You are rocking this and help others feel less alone. I’m one of them. God bless and prayers for sweet Charlie.

  • Reply
    Samantha
    2019-05-08 at 12:54 AM

    I think this was incredibly brave of you. Thank you for sharing.

  • Reply
    Holly
    2019-05-08 at 12:59 AM

    My son will be 22 this month. When he was nearly 3 years old, he regressed and lost his capacity to generate language. I grieved for years, but over time, my grief and distress abated and I learned not only to accept, but to find pleasure and insight in my son’s company, knowing that he will always be as he is. It’s true that we can’t converse in the conventional sense, but we share scripts that approximate conversation, which we use to affirm our mutual love and affection. I hope your grief abates over time. Parenting a significantly autistic person is hard work, and parents don’t deserve to have the daily challenge of providing care compounded by hostility from people whose experience of autism is vastly different from ours.

  • Reply
    Mym
    2019-05-09 at 6:47 PM

    Is it real all the negative and hateful comments you are leaving??? So, you are critiquing this mom for opening up and share what most parents won’t… I never read anything disrespectful or hateful towards the child, but here you are telling her she is a shitty mom and wishing her death!!?? Those people who wrote that are the one I PRAY TO GOD never get to become a parents!!! What king of monsters will you be raising?
    I am a mother of two boys! With no special needs and sometimes I FEEL EXHAUSTED!!!!
    So dear mom who wrote this: I applaud you!! You are doing great and I can’t even imagine how hard it is tuis situation! It is OK to feel that way and more to express it so we feel relieved!! I admire you so much and I can tell that you are a loving mother! Ignore the hateful comments! People speak the way they are inside… so it’s their problem, not your

  • Reply
    Lorry Hill
    2019-05-10 at 5:29 AM

    I think that the hateful comments all share a misunderstanding that you are saying you grieve Charlie’s existence rather than what you actually said ; you grieve the loss of the child you imagined you’d have. It’s very nuanced but an important difference. Many parents are told to grieve this loss.

  • Reply
    Sehrish
    2019-06-07 at 1:06 AM

    Cruel comments…i believe you cant comprehend or relate unless you hv gone through a certain situation but again you dont comment such hateful comments on another person’s situation…may God bless n make things easy for you n charlie(he is so much like my son,it breaks my heart n sometimes i wish for that brain decoder too)

  • Reply
    Maggie S
    2019-07-19 at 2:24 PM

    Have you tried AAC? Low tech or high tech?

    • Reply
      Eileen
      2019-07-25 at 11:51 PM

      We’ve tried everything, from PECS to Sign Language. He’s been using AAC (Proloquo) for 4 years and he can communicate basic needs such as “I want + item”.

  • Reply
    Maggie S
    2019-07-19 at 2:28 PM

    I mean, if the iPad isn’t working for him, there are so many other choices. There’s even a Facebook group, “Ask Me, I’m An AAC User!” that is just fantastic.

    • Reply
      Eileen
      2019-07-25 at 11:51 PM

      We’ve tried everything, from PECS to Sign Language. AAC is our best option right now as he can communicate basic needs such as “I want + item”.

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