Mind and body disconnect

She broke the electric pencil sharpener.

I heard the loud grinding noise seconds after I’d turned my back.

I was not happy.

After yanking the plug I said, “I’ve told you so many times not to stick objects in the pencil sharpener. And now it’s broken!”

The sharpener had become very much a part of our RPM routine. She’d spell a word or sentence and I’d let her sharpen her pencil (whether it needed it or not). But soon it became a problem.

I fetched the stencil board and without hesitation she spelled, I AM SORRY. I SHOULD HAVE LISTENED.

“Why didn’t you listen?”

I CANT CONTROL MY IMPULSES. I SHOULD HAVE LISTENED.

These days I only pause for a second to marvel at the fact that she even knows what impulses are. This is the child I always thought had to be taught in a very slow, deliberate and methodical manner. Yet she has learned words, facts and ideas completely on her own. Her depth of understanding blows me away.

I sighed, “What are we going to do about your uncontrolled impulses?”

PRAY.

 

I’ve repeatedly read other autistic people – particularly non-speaking autistics who use alternative means of communication – express this same sentiment: that their bodies often do not cooperate. There is a mind/body disconnect that often leaves feelings of frustration, discouragement or embarrassment, particularly when people around them dismiss their behaviors as annoying, difficult, apathetic or unintelligent.

The fact that Rhema articulated a similar struggle was so insightful for me. I wanted her to know that she was not alone. Our friend Philip has written a lot about his struggles with impulse control. The next day I read some of his words to her:

I am in a body that does not obey my brain.  I am open minded but my actions are each day searching the peace of mind.  Tons of each day I am so tired from making my body obey my brain.  I am always estimating to overcome an impulse.  Impulses come in many different forms.  I may see food and out of the blue it makes me wholly tuned into it.  I am really too slow in my thinking to stop myself from taking the food.  I feel bad after.  I think I really need to readdress understanding real need to control my body. ~Philip, March 2014

I am dealing with awkward behaviors all the time. At school I sometimes pace when I should be sitting or I shout out when I should be quiet. People think i am doing it on purpose. I am not. I get caught momentarily mightily by an impulse. My body cannot stop itself. I momentarily lose control. People can plead with me to stop. I want to listen but at times my body won’t obey. Ramming against a caring mind is my body. Going near loud noise hurts me literally. I am each day daring hard to fit in.  A tame mind can ease my day. Peace comes day to day from people who accept me at home, school, and church. ~Philip, January 2015 

Philip on the difference between impulses and stims:

Impulse is trying to reach for peace momentarily but it is opposite in potential. Peace never comes from acting on impulse. It only brings remorse. Unlike impulses, stims are necessary for living. Stims should be tolerated at times. One day you might learn to appreciate them. Ceasing to stim bodes poorly on my thinking. Lots of thinking happens as I pace, flap, or use another movement. I think stims are healthy but impulses are not. Help me by stopping impulses but allowing stims as long as they do not hurt anyone. ~Philip, January 2015

I asked Rhema for her thoughts and she responded:

I HAVE SO MUCH TROUBLE WITH MY MOTOR SKILLS

I AM HAPPY TO HEAR THAT OTHERS HAVE THE SAME STRUGGLES.

IT IS SO HARD TO HAVE MY MIND NOT HAVE CONTROL OVER MY BODY.

 

So when another object shatters on the floor, I am trying to understand. When she flops in that same spot in the store or when she seems to ignore my directions, I am cutting out my groans. Even when her actions unintentionally hurt me or others, I am trying to look past my pain and see hers. And so, the girl who some assume lacks emotions and understanding, is teaching me compassion and empathy.

“I don’t have trouble with impulse control the way you do, Rhema. But on some level I get it. Paul wrote in Romans thousands of years ago, ‘I do not understand my own actions. For I do not do what I want, but I do the very thing I hate.’ I know this experience inside and out, over and over. So many times I’ve cried, “I am sorry. I should have listened!” Every day I have known the amazing grace of Jesus that saves my life. Every day! And forbearance and forgiveness from loved ones in my life. Grace is a patient teacher; it motivates me to try again.”

I HAVE MY HOPE IN THE LORD TO PERSEVERE

I HAVE SO MUCH HOPE NOW THAT I HAVE MY VOICE

HE WILL GIVE ME STRENGTH

SO I WILL NOT GIVE UP

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12 thoughts on “Mind and body disconnect

  1. In a much different way this is the same struggle my ADHD son has. He tells me all the time that impulse control is his main challenge. He acts and then realizes afterwards that it wasn’t the right thing to do but by then he’s already broken something or made someone mad or put himself in an unsafe situation. He told me recently that his body just does things and his brain can’t stop it and he doesn’t know why. When he was younger I got angry or annoyed with him all the time and he was constantly getting in trouble at school. Now that he’s older and able to explain what it feels like to HIM, it has helped me to parent him in a totally different and better way. It has also helped me when I’m speaking with his teachers and such. So far, this has been his best school year and I think understanding him and his “mind/body disconnect” has played a huge part. It’s not easy stuff but our kids ability to communicate is so big!

    • Thanks for this! It’s further confirmation. Our kids really are so amazing when you think of all they must contend with. I’m so glad he’s had his best school year! xo, friend!

  2. Oh Jenielle. My heart is singing. Tears of joy are falling. I’m so happy for you and Rhema. So happy for this amazing gift of communication. Rhemas gift. Her insight and intelligence are mind blowing! Amazing love. How has this changed her relationship with Hope?
    Chris

    • Chris, it’s so incredible what’s happening with Rhema. I told Hope you wanted to know how it’s impacted her relationship with Rhema and she said “We’re even better friends now because I feel like I know her even more now.” 🙂
      Love to you all.

  3. There are no sufficient words, Jeneil…may Jesus Christ be praised! I try to imagine what it must have been like for her to have us all think she didn’t understand—didn’t get it. But she’s brilliant—and so well-spoken!! And you, dear one, are such a willing and malleable tool in God’s hands. I cheer you on! ❤

  4. May 12, 2016 by rhemashope
    Mind and body disconnect

    These days I only pause for a second to marvel at the fact that she even knows what impulses are. This is the child I always thought had to be taught in a very slow, deliberate and methodical manner. Yet she has learned words, facts and ideas completely on her own. Her depth of understanding blows me away.

    You have obviously been teaching her and teaching her well for her whole life. Now she has a method to communicate what she is thinking. She did not learn this on her own. You taught her!!!

  5. I am so blown away by the depths of Rhema’s comprehension.

    Your angel Rhema brings tears of joy to my eyes and fills my heart with increasing levels of inspiration and love for my son, Ryan.

    Thank you so very much for your relentless efforts and for sharing your beautiful angel with the world.

  6. Oh, my! I’ve been so involved in my own changes that I haven’t kept up with you blog and look what I’ve missed. I’m gobsmacked by Rhema’s growth and reminded again that the age of miracles is not dead.

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