The River Knows My Voice

Editor’s Note: Charlie wrote the following as part of a discussion assignment for Language Arts class. The assignment was to discuss three stories involving nature and how experiencing nature can change the way you think about it. 

 

Nature is best experienced in person. In “A Walk With Teddy,” Roosevelt heard the blackbird sing and his heart was full. The story “Camping With the President” especially shows the effect being in nature had on Roosevelt. The feeling he had when surrounded by tall trees and crisp, mountain air was “bully!” and led him to do some “forest good.” In “A Life in the Woods,” Thoreau moved to the woods and found inspiration to write. Thoreau wrote about loons and special experiences in nature.

Rivers inspire me to sing happily in my mind but I don’t sing with my mouth. The river knows my voice anyway.

Dear World

A friend asked if Charlie would share his thoughts about autism. He did, and I wanted to pass along what he had to say here as well.

“Autism hasn’t changed, it is misunderstood.” I agree wholeheartedly that it is misunderstood. And autistics are the only experts out there.

Dear World,

I have autism which means I have a stupid body that makes me look like a nincompoop. Keep learning about autism and let’s each be more kind.

Autism is getting intentionally and unintentionally misrepresented. Autism hasn’t changed, it is misunderstood.

Do not research to find a cure. Research to find ways to help autistics communicate and get control of their anxiety. Research a better way to teach autistic kids other than ABA. Help us learn control of our own bodies by working with us to learn motor skills and leisure skills.

I am hopeful life has much to offer autistics, but we need your support to achieve great things together.

With Much Respect,

Autistic Charlie

Fighting Against My Own Body

A couple days ago I stumbled across this article about Sensory Processing Disorder (SPD). As many of you know, SPD is almost always concurrent with a diagnosis of autism. I’ve tried many times to get Charlie to explain to me how his “ghastly,” “horrible” body feels, but every time I’m met with “you won’t understand” or “only people with autism will understand.” After that, he shuts down and won’t talk about it further. When I saw that article and read the girl’s description of what it felt like to have SPD, it hit me hard.

Rachel Schneider was 13 years old when it happened the first time. She and a few other children had been singing prayers at her Hebrew school when suddenly Schneider felt that something inside her head had gone wrong and that she wasn’t there. Her father brought the terrified girl to an emergency room, where doctors dismissed the episode as a panic attack. They said that Schneider was fine.

It happened again while Schneider was on vacation in Quebec City with her parents and sister. Inside a souvenir shop, she was startled by a man who came up behind her holding a small marionette and speaking rapidly in French. Schneider screamed and ran out of the store. Her mother tried to comfort her, but Schneider could not be consoled.

“Suddenly it was like the entire room was pouring into my brain, and the lights, and the sound,” Schneider said recently. Speaking of that first incident, she said she felt as if a chasm had opened up inside her head, and she was seeing but not seeing, and hearing but not hearing.

I decided to share the article with Charlie and get his thoughts. We had a long chat about it, and I asked him a lot of questions. At first, he did his usual “only someone with autism will understand” bit and tried to shut down the conversation before it really started. I told him that maybe he could take a stab at explaining as this young lady had. I found what he shared incredibly enlightening and also completely heartbreaking.

Charlie: I’m very pleased to hear this. Talking about it is good. Like her, I feel like my head has been invaded. Each sound sounds like it is crashing in my head. Only people with autism can understand. Pain permeates my body and I lose control. Power of my body to take control is lost.

Me: Is this a constant thing or does something trigger it? Can you feel it coming or does it take you by surprise?

Charlie: It is constant at times like at stores.

Me: Is it only sounds or does anything else bother you?

Charlie: Light and motion also. For me driving in a car helps. Takes me by surprise mostly.

Me: What emotion do you feel when this happens?

Charlie: Scared. Like im falling in a big hole. Especially when fighting against my own body.

Me: What about where she talks about not being able to feel her own body? Does this happen to you?

Charlie: Yes. This is constant. I have to move to know every body part .

Me: If you’re not moving, what does your body feel like?

Charlie: Nothing. There is no feeling.

 

 

Eating and Anxiety

Charlie had to write an essay for Language Arts about a problem he has had to face and how he solved it. He chose his “obsession” with food. I asked him if we could share it, because we know so many other families who struggle with this exact same issue. Indeed, it is a constant struggle in our house. Thanks to Charlie for letting me share with all of you. 

I am obsessed with food. If I see it, nothing can stop me from wanting it right NOW! Eating is a simple, very effective way to beat anxiety. No food is safe if I can see it. I will steal food of other people’s plates, from the grocery stores, and out of the cabinets at home. It is very embarrassing for me and stresses my mom out horribly.

In order to solve this problem, I need to tackle my anxiety. That is a long term solution, so I have to try other things as well. First, all food should be locked up and out of sight. Second, in grocery stores, an apple will help keep me calm while we shop. Some stores give kids free apples to eat while shopping. In other places, nothing works better than distracting me from the food. Sometimes my mom takes me to another room and reads to me. Staying calm is the key to attacking my food obsession.

God Is Staring Right At You

Editor’s Note: It’s been foggy around here a lot, especially at night. It’s so beautiful, especially with all of the Christmas lights. It creates this soft, white glow that calms and awes me. I tried to take a picture the other night, but it’s impossible to capture. Charlie and I sat down this morning to work on an assignment for Language Arts. He started typing, and almost immediately I could tell he was not working on his Language Arts assignment. This was stream of consciousness writing on his part. He doesn’t always open the window so willingly to his inner thoughts. I’m so glad he did this time, and allowed all of us a peek. As always, I share with his permission. 

The fog is dying a bitter death. No person can stop it. Only night can bring it back. I never miss looking at people’s faces on such nights as I do on those filled with milky fog. These moments hold me bound to love the artist we call God. I’m happy to glimpse God in my day. If you look, God is staring right at you. ~ Charlie Taylor

Baggage Claim at Austin International

*Following is an assignment Charlie had for Language Arts. Specifically, his assignment was to write a narrative about a trip. Again, I learn something new. Never knew he worried about exposing his inner world to everyone. He’s even braver than I thought.*

 

I stood at baggage claim with my mom feeling giddy with excitement. Trying hard to hear my brain, I fidgeted for control of my body. Thinking about this trip gave me such hope, but it scared me, too. I’m inside my mind all the time, but no one else has been there with me. Having to share all my thoughts with others seemed terrifying. What if they thought I was weird? Freedom to express myself was a dream I thought I would never realize. My reality was fervently crashing around me. The world as I had always known it was changing from complete silence to a world of letters, and I was both overjoyed and nervous. I was excited to meet Soma but worried I would do something embarrassing. Soma was my idol so I felt pressure. My mom started for the door, and I followed, my past forever left behind me like old baggage.

I talk in my dreams

Facebook reminded me that two years ago today Charlie and I were traveling to Austin for the fist time together. We went to give “this RPM thing” a try, not really knowing what to expect. I reminded him of that today and later he requested to write a letter to Soma. Since it is a personal letter, I’m not going to share the entirety of it here. However, there was one small portion of it that blew me away:

I talk in my dreams

I’ve heard people speculate whether blind people see in their dreams numerous times, but I admit I never even thought of this before: that in his dreams, Charlie talks.

I don’t know why I never thought of it, because he talks in my dreams, too.