Autism

Raising a non-verbal child: I wouldn’t change you for the world, but…

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Raising a non-verbal child. I wouldn’t change you for the world, but…

I often talk about how proud I am of Charlie and how much I love him, how I wouldn’t change him for the world. I wonder if by being too positive, I’m contributing to a twisted perception of autism.

Most of the time when I tell people Charlie is autistic, I get reactions like he looks so normal or oh, like Rain Man? What’s his super ability? Oh friend, I so wish autism was like it’s portrayed in movies. Charlie’s “splinter skill” is to sleep through the night which is, believe me, a super power when you have a child with autism.

It’s 2017. Why do people know so little about autism? Did you know that 1 in 68 children has autism. Is autism taboo? I know it is in France. What’s our excuse for not talking more openly about a condition that’s affecting so many children? Are people so afraid to talk about autism that the only information they get come from TV shows and movies which in turn continue the circle of misinformation? Perhaps we’re just disinterested in it as a society. That’s fair, I suppose. Am I contributing to people’s linear view of autism by writing mostly about the positive things? I wonder. Being honest, if I’m sometimes overly positive in my articles, it’s usually a therapeutic way for me to make myself feel better. There are wonderful moments and Charlie is a great kid who I’ll love forever, but there’s something else I need to say too. Autism sucks. There. I said it.

Let’s be real for a minute today and I’m going to tell you about autism raw and unedited. Autism like it really is. Raising a non-verbal child is difficult. It’s hard for him and it’s hard for us, his parents. There’s a lot of frustration everyday. A lot!

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Let’s do a visualization exercise. Close your eyes for a minute and imagine that you’re really thirsty but you depend on someone else to bring you water. Imagine how you’d feel if you needed water but you had no way to let other people know about it. You’re trying to talk but only gibberish comes out. You try to mime what you want with your hands but all the wrong movements come out. It sounds pretty horrible, doesn’t it? This is the life of many people with autism. Some of them are trying to communicate and failing, and some of them don’t even try at all, though they still have those needs that are unmet.

Besides very basic needs for which he uses an app on his iPad to communicate, Charlie is unable to make himself heard. Have you ever had that nightmare where you’re in danger and you’re screaming and no sounds come out of your mouth?

As Charlie’s mom, I want to make it easier for him, I want to help him. I want to fix it. 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. They make it better. But I can’t. Not me.

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 hope that maybe 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.
Bar? Pushes it away.
Puffs? Pushes it away.
Ham? Pushes it away.
Toast? Pushes it away.
Yogurt? Pushes it away.

You can feel the frustration growing more intensely as I fail to comprehend his needs. He gets more and more impatient after 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 while he resorts to screaming. I feel sad too. Really frustrated, but mostly powerless. Once we’ve reached that point, there’s nothing else I can do. I failed and we just have to wait. I wait until I hear the silence. Not the kind of silence you want to hear. A silence full of tension, a silence that means that Charlie gave up because that’s the only thing he could do. It doesn’t matter how hard he tried, he doesn’t have a voice and he couldn’t make himself heard in a purposeful way. The only thing he can do now is surrender.

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When you hear me say that I’m proud of Charlie and that I wouldn’t trade him for the world, I mean it. He is amazing, he taught me more in 4 years about perseverance, tolerance, and courage than I had learned in my whole life up to then. This is as real as my frustration about him being non-verbal. I’m totally writing this to remind myself that despite all our challenges, he brings so much joy and positivity into our life. What I would like to change are his struggles, not him, and not even his autism because he wouldn’t be who he is without autism. I’d change the co-morbid conditions that come with autism: speech impairment, anxiety, OCD, intellectual disability, and sensory issues. But above all, I wish I could give him a voice.

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8 Comments

  • Reply
    Rose
    2017-03-04 at 11:29 PM

    Heartfelt and beautiful !!! Very well written I hope uneducated folks understand a little more how complex this spectrum can be.

  • Reply
    Jo
    2017-03-05 at 12:50 AM

    Thanks for the honesty, I am about to take on fostering an autistic 9 year old who can’t talk so am trying to research as much as I can so that I am better equipped to help him.

  • Reply
    Wendy
    2017-03-05 at 6:26 AM

    While my daughter is 13 and now verbal, I still could relate to this so much. My Isabella is high-functioning which makes people think that she/we have it easy. We don’t. It comes with its own set of struggles and getting here has been so hard. Sometimes it feels that if you talk too much about the hard times people take it as a criticism of one’s child vs venting about real-life challenges. If you speak only to the triumphs, well then people minimize the fact that there are struggles at all. I do my best to share about all aspects of our autism journey and hope to educate people in the process.

    The Rain Man references…ugh. SO many people think that is the epitome of autism. Then, the “looks normal” comments. What is “normal” and what does appearance have to do with it!?

    Anyhow, I think all we can do is speak our truth. Sometimes it is going to be good and sometimes it won’t be, but sharing our stories is better than not talking about it at all. People need to hear from individuals and families who reside on various points of the spectrum so they can gain understanding.

  • Reply
    Kathleen
    2017-03-05 at 7:13 AM

    C’est très triste et très beau à la fois ❤️

  • Reply
    Deb Hatton
    2017-03-07 at 8:18 PM

    Truly touching. You could not have more perfectly summed up the stark emotional dichotomy of raising a child on the spectrum. All my love. <3

  • Reply
    neal
    2017-12-21 at 5:38 AM

    Yes. Autism sucks. Big time. Endless screaming. House bare of furniture, for safety and sanitary concerns. Urine and feces everywhere. Single dad of deeply autistic nonverbal 12 year old boy. Constant struggle over every detail. Can’t go to post office or grocery store, or even the park, have to go way off in the forest to have a walk/flail/tantrum/whatever. This is literally killing me. I have no life, at all, every ounce of energy sucked into black hole of autism. I have no idea what will become of him when I keel over. Figuring on getting him to 20 or 30 with any luck. It is living death. Fighting despair.

    Upside is I have learned a lot from him because he is not full of crap and phony like normal people. He doesn’t know what money is. Doesn’t know what a nation or a flag is. Who is more of an idiot, the rank and file brainwashed kids reciting the Pledge of Allegiance, or the autistic flapping in circles while the principal reads the pledge over the P.A.? The kid doesn’t manipulate, scheme, pose, lie, compete, hurt people, all the things we teach our kids to do to “achieve”. What kind of sick people are proud of their kids for say inventing a nuke, or some other techno insanity, or becoming a military general? LOL, who are the real freaks on this planet?

    So I am grateful for this lesson, because these people are innocent, and it is ugly and horrifying for us “normals” to see our entire phony reality thrown in the trash – because we normals are the corrupt sick ones, who fight wars and steal and ruin the world – autistics will inherit the earth and return to paradise.

    It is as if the Earth is rendering humanity unable to continue trashing her with knowledge and tech development, without wiping humans out. Read “Childhood’s End” by Arthur C. Clarke.

    Sour grapes? Maybe so. But I have come to respect these people and their difficult road very much, and am embarrassed at the sickness considered “normal”.

    So at least I learned something from it.

    • Reply
      neal
      2017-12-21 at 5:57 AM

      P.S. Happy solstice, all you autismnauts! Just noticed Dec 21 as i pondered whether my post was over the top . It is indeed, c’est la vie. But I believe every word so forgive my delusion, twelve years of extreme stress will get to you. We may not be fireproof but we are doing asbestos we can (har har) . . . ; p

      Keep smiling, at least in your hearts. Thanks for the great posts.

    • Reply
      J.
      2018-06-21 at 4:18 AM

      That, Neal, is what I call a raw depiction of autism. Joyless and tiring and if you talk about how hard it is, may heaven have mercy on you for not accepting your child as they are. Thanks for telling it like ’tis.

      Plus, I don’t think I’ve ever heard the perspective that people with autism reflect our ugliness and phoniness right back at us. I’ll have to think about that one.

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