Open Communication

Holly writes:

I would love to know how easy or difficult it was for you to begin open communication after mastering pointing to letters or typing. Thanks!

To Holly,

Open communication was a hard-won victory for me. I longed to communicate openly all my life. I found it impossible until I learned RPM. I am going to tell you why open communication is hard. Talking takes all the energy I have. Day to day I use language in my inner thoughts. I hear my own voice. It sounds perfect in my own mind. Getting my thoughts out is lots of hard work. My mouth won’t say my thoughts. I badly want to talk but I lack what it takes to translate thoughts to speech.

I had to learn to spell my thoughts. Spelling is easier because I can point better than I can speak. But it was hard to learn. I had to learn how to control my body to stay focused through onslaughts of other competing thoughts and every sensation. I learned to spell on a stencil and how to think more thoughtfully so I could peacefully make opinions and describe my feelings. At first I learned to spell answers to facts about subjects. Then I learned to use my reasoning to solve problems. Back when I was learning I had a hard time not being distracted. Stims and impulses fought with my brain to get my body to disobey. I needed my mom’s presence and prompting if my brain were to win. I tested my brain to make my body stronger at following commands.   I made myself listen to my mom to keep myself focused.

Going from an academic subject to open-ended communication was like learning to ride a two-wheel bike. I needed support from the training wheels to learn the motion of riding the bike. Then I needed confidence to know I could do it. When I first rode a two-wheeler I was completely shocked. I was not sure I could ever do it but once I did it, it seemed so natural. That is how open communication happened for me.

Open communication is different from all other responses. Recalling facts is easiest. It only takes retrieving them from their storage. Reasoning takes letting a few thoughts out of storage and joins them together. Open-ended communication involves being able to extract a thought from an ocean of tangled thoughts. Some thoughts are silly. Some are annoying. Some are sad. The thought that wants to be told must untangle itself slowly and with gentleness. I make my thoughts come out by typing letter by letter because I must slow down to get my words out. I am patient because being quick leads to impulsive answers I don’t mean to make. I think I will talk someday but I have to be patient.  

Open communication is what allows me to be free in my soul. I can be understood. I can now let people into my life. I can exchange ideas with them.  I can advocate for myself. I can make goals for myself.  I can teach. Open communication lets me be free to live.

Philip

Talking with fellow blogger friend Rhema

Copyright 2017 Philip Reyes.  All rights reserved.

My Time in Maryland (ICI Conference)

Me and Diego

Two weeks ago I attended ICI in Maryland. ICI means Institute on Communication and Inclusion. Making learning about autistic means to inclusion pleases me. I met Diego, his mom Edlyn, and his helper. It was fun hanging out. One of my favorite days was when I got to type with Michael and Camille. We typed about the ABCs of inclusion. Inclusion is so important. Elizabeth cared about our group and loved what we wrote. I am pleased she wanted to talk with me and held my keyboard even though she never met me before. She had confidence in me and her ability to talk with me.

Me and Elizabeth (practicing independence)

Good meaningful lectures peacefully made me take note of what I would like to achieve too, like doing a talk. I would also like the ability to type more independently. Lots of time and practice needs to be invested to get good. Part of my learning was getting to practice more stressful environments. I want to get better at sitting quietly and not being disruptive. I get mad at myself for being too noisy when stressed. Peace often escapes me in crowds and loud places. I was managing as best I could. Life day to day can be unpredictable. Sometimes I am in more control of my body. Other days I can hardly feel my body. It is the worst feeling to feel weightless. I hate being practically disembodied. It becomes a nightmare. Stimming helps feel my body again.

Part of a big drum circle

On day 1 I could not stay calm. I needed to stim badly to feel my body. Help came from Casey. She gave me a massage and sang to me. Casey saved my day. I sat more calmly after that. On day 2 I had my best day. I loved that I could participate and meet new friends. Making friends was the best part of the conference. I will remember talking to Diego, Michael, Camille, and Elizabeth as the highlight of the week.

Michael, Camille, and Me

ABC's of Inclusion

by Philip, Michael, and Camille

Actual inclusion opens doors.

Be patient with us. 

Caring people make it successful.    

Don't give up.

Excellent expectations. 

Friends, need I say more?    

Give us lots of patient encouragement.

Hear us when we spell. 

In day, talking to friends opens my world.      

Just like typically functioning,need support.

Keep believing in us. 

Learn challenging subjects. 

Must be proud.

No baby talk. 

Open hearts please us.       

Praise our achievements as they are yours as well.

Question your assumptions. 

Remember we are just like you.

Spelling is our way out.

Treat us with respect.  

Understand totally intelligent and eager to learn.

Voices must be heard.      

Wait for us to finish our thoughts. 

Xylophone can't make open words and it still is in the orchestra.

You are needed for our success. 

Zero tolerance for non believers.

Advice About Interacting With Me

Rick asks:  How are the best ways for people to introduce themselves to you, talk to you, and interact with you?

I like talking to people. I am interested in learning about others and getting meaningful friendships. But learning to interact with people is hard work. I get nervous around people. This is because of lots of things. I mostly get nervous about not being able to meet people’s expectations about me. I am smart but my body is not obedient to my mind. It makes me look stupid, misbehaved, and foolish. That is why I am anxious in public. I can appear like I am rude and uninterested in you. Please don’t take my lack of eye contact and the way I walk away as a sign I don’t like you. I am not in control of my body.  

I like when people can see past my weird behaviors and be patient to listen to me. Make me more comfortable by peaceful patience. Learning to be social is hard but I want it badly. Please say hi to me even though I look like I am not interested in you. I mean to say, “Hi, how are you?” but it won’t come out. Be patient while I type. Be persistent with getting me to learn about you. If I walk away from you while you are talking, it means my body is nervous and needs to move to calm itself. Please don’t take offense. I wish I could stop myself from walking away. You can follow me or wait for me to come back.

I love my relationships in school, church, at home, and on Facebook. I can communicate pretty well but I am slow. I think the Internet has been a wonderful thing for people like me. I can talk to many people at once. I can teach people about autism. I can write my friends letters and texts. My good friends are people who love me and accept my autism.

Philip

My friend Kevin loves to take selfies of us with my iPad!