Note from Tricia: My mom passed away April 22, 2018. My kids called her “Dee Dee.” She was a big presence in their life and mine. She will be missed greatly. She did a lot of things very well in her life, but mom and “Dee Dee” were where she excelled the most.
Charlie had an assignment to write a paragraph for Language Arts. He chose to write this about his Dee Dee.
My Dee Dee was free with her love and loved me so much. Real love like that is hard to find. Only my kind Dee Dee thought I was smarter than everyone else. She helped me resolve to find a way to communicate, and after I learned she told me to never stop believing in myself. Her never ending faith in me kept me believing in myself. Every time I feel like giving up, I will always remember my Dee Dee believed in me to the end.
Editor’s Note: The following is an assignment Charlie completed for Language Arts. The assignment was to write a personal narrative about an event in his life. He typed a little over half of this on the laptop and the other half was done on the letter board.
I lived in a silent world until I was eight years old. I heard everything but I couldn’t talk. No one deserves to have their voice silenced forever. Real silence is devastating. Echoes of my former voice were keeping me alive. I’ve yearned to talk like I did when I was three years old. Just hearing a tape of myself would shake me up and make me feel very fearful my voice would be gone forever. Nothing scared me more.
Desperate, my mother looked everywhere for help. She never gave up researching all that she could. Very determined to help me find a way to communicate, she planned a trip to Austin, Texas to see Soma Mukaphady, the creator of the Rapid Prompting Method.
On the plane ride to Austin, I was incredibly nervous but also excited. I had no idea what to expect from this trip. I didn’t want to get my hopes up for fear that I would be sorely disappointed.
It was a really hard car ride to Halo, Soma’s clinic. Riding in cars is usually one of my favorite things to do, but not that day. I was nervous and scared. What if I let everyone down? What if I failed? Should I just go back home and not even try? I didn’t want to face a lifetime of silence. This might be my last chance.
Fear took hold of me when we pulled into the parking lot. I slammed the car door shut when my mom tried to get me out. I wanted to stay in the car and hide. Soma walked inside, and I worried she didn’t want to see me anymore. My mom walked me in feeling braver than me. Soma told me to sit on the couch near the door. She started telling me a story about a clever lion. Beneath my fear interest started welling up inside me. How I liked that story! Not quite realizing what was going on with Soma I saw my fingers wrap around a pencil and point to choices she showed me on paper. It came as a surprise to me that I could do it, but it wasn’t as hard as I thought it would be. Then Soma showed me a stencil board with seven or eight letters on it. She asked me to spell “lion” while she sounded it out. I pushed the pencil through the letters on the stencil one by one. It was slow, but I did it.
Spelling letter by letter is how I talk now. I still wish I could speak with my mouth, but I don’t have to live in silence anymore.
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.
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.
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,
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.
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.
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