Saturday, September 16, 2017

The Cage

This essay is in response to a parent whose child has started openly communicating after a year of doing Rapid Prompting Method (RPM).  It has been observed that the transition from not being able to communicate to communicating is often accompanied by difficult emotions and behavior.  This is Philip's explanation from his experience. 

Being able to communicate after many years of silence is like being let out of a cage. I sat in this cage like a bird on display at the zoo. People could not penetrate the glass of my cage. I did my best to make myself at home in the cage. The cage was transparent and I could still sense the world. I could lose myself in the world of colors, shapes, patterns, and rhythms. I did not share my experiences with others. I had no means to share my thoughts.  I learned to keep myself occupied by teaching myself through my senses. It was lonely not being able to communicate with anyone outside my cage. I prayed I could leave the cage everyday. My one comfort was talking to God. I talked to him all the time.

The cage only needed a key. If I could find someone with a key, I could get out. When I was nine we went to Austin, Texas where I met Soma. I saw she knew my situation. She was my hope for opening my cage. I tried with all my energy to answer all her questions by pointing to the choices and spelling. During that week my parents learned to see me in a whole new light.

At home I could not do with my mom what I could do with Soma yet. I had to persist in working with mom. Getting out of my cage was practically like escaping a maximum-security prison. Even though Soma had the key, I had many other obstacles. I made lots of routines in my cage that couldn’t be given up easily. Leaving them behind felt like betraying an old friend. I made myself free of them by learning to trust God that he would protect me outside the cage.

I began openly communicating with mom after months of RPM lessons. I could see more clearly through my mind’s clutter only after I became used to thinking through lessons that helped me categorize my thoughts and organize them in a way I could access them better. My communication is the greatest gift I ever received. Communication freed me from my cage. At last I could tell my thoughts and feelings to everyone.

The world was suddenly open. My cage slowly became dismantled. For me this was both amazing and frightening. My greatest wish came true. I was free. But I was also more aware that I now had new expectations on me. Would I be able to handle them? I could interact with people. But I was different. Would I be included? Could I be integrated into society like every neurotypical person? I began to have more anxiety about my new life. Sometimes I had meltdowns because overwhelming feelings could not be contained.

Integrating into society has been meaningful to me. Before I could communicate, I was treated like a beloved pet. I was loved but I was not seen as understanding. People would talk about me but not to me. When I was able to communicate people began to talk to me more regularly. I love being included even if I can’t join in easily.  I am becoming better able to integrate but I have to keep working at it daily. It is helpful if society puts in the effort to include me too.

I have been able to integrate into more mainstream education. This has been so beneficial to me. I have learned so much. I learn new things everyday. I have learned to manage myself better. I make friends. I have meaningful days. I am no longer in a cage.

I am now free to fly. 

First day of high school.

Copyright 2017 Philip Reyes.  All rights reserved.

Sunday, September 3, 2017

I Need An Education

I think having a regular education has helped me by making my mind grow and learn how to be more purposeful. I have made lots of progress since my mom started teaching me academics using RPM. I loved learning new things about history and the natural world. I cared to learn more than how to follow commands in autism school. I am interested in learning about the world. I want to be able to change the world for better. I am learning that people become more able to affect change when they have a good education. I want to be a writer.

I think academics have helped me to be more aware of the world. I am more able to understand life and how people think. I can appreciate nature even more than before. I can make my thoughts known that I understand and I can have opinions about things. I also can write better from being exposed to better material.

I have been able to become more purposeful in my actions. Academic learning helped me by letting me use my brain toward solving problems rather than memorizing. I learned to practice answering questions using reasoning rather than by drilling. I had to point to choices and spell to show I could understand. I wanted badly to be able to express myself. I could not leave my world of distractions without being prompted to make an effort to stay on the shared attention of myself communicating and mom listening. I had to put aside my senses calling me to answer their every whim. RPM gave me the ability to put my purposeful thinking to the forefront. I still struggle with this way every day. I learned I needed to better make my mind focus if I were to express myself. I have to concentrate so hard to communicate. Lots of impulses compete with my desire to talk. Peace comes when my purpose wins over my senses. I am beating impetuous behavior with reason. I am making an effort to be with people more. I believe I can talk to others now because I have prompts to help me communicate. I want to not be a prisoner of my internal sensory world. 

I am able to do many things with support. The support I need is to prompt me to focus and stay on task. I make gains in my life each time I am taught something new. I am ready to try high school. I mean to do well. Having a well-developed curriculum will make school more enjoyable. I want to learn math, science, social studies, literature, and arts. I mean to learn life skills too but not all day. Life skills are hard for me because of my poor body control. I am better off using my brain. I am so locked in a body that does not listen to my mind. It is the most frustrating thing about autism. I maintain sanity by learning meaningful things. I lament I cannot do more. I need lots of practice to learn purposeful skills. I make lots of actions I don’t want to make. I need to be prompted to stop by redirecting me to what I need to be doing instead. I want to be less prompt dependent but I still need prompts or else I would be in my stim world all day.

I start high school on Tuesday. I hope I do well. I look forward to good classes. I will take global studies, music in our lives, read 180, keyboarding, and math. I look forward to good classes. I hear I am going to learn a lot.

Copyright 2017 Philip Reyes.  All rights reserved.

Thursday, August 24, 2017

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.


Talking with fellow blogger friend Rhema

Copyright 2017 Philip Reyes.  All rights reserved.

Thursday, August 17, 2017

Summer Vacation Part 3- Outer Banks

I had an amazing time at the Outer Banks. I cannot mention everything that happened because there was so much. We went to Outer Banks to celebrate my Lolo and Lola’s 50th wedding anniversary. There were about 40 of us vacationing together. They were my mom and aunt’s families and their cousins’ families and my great aunt and uncle. A couple friends came too. We stayed at a property on the beach. It had 3 houses on it. I was meaning to get to know everyone but it is hard when there are so many people. I made the best of it by listening and hanging out. I think my extended family is a lot of good people who are loud and fun. I loved feeling loved by so many people.

Every day we had fun laughing. I learned that laughter teaches people how to relax. We laughed a lot being silly and telling funny stories. I liked listening to family banter. Talking is a form of playing for many people. I didn’t join in talking much but I quietly made myself a part of the group by hanging out. Besides talking my family played lots of games too. They played Texas Hold Em and mahjong.  I backed my parents to win but they didn't. I stayed up really late because everyone was up all night.

I liked going to the beach everyday. The beach was nice. I basked in the sun and water. I loved the sands softness and the water’s cool refreshment. The waves were rougher than in Mexico so I didn’t go in as far. But I still enjoyed it.

I made lots of good memories. I went to the sand dunes and went on a hike. I saw beautiful sunsets. I saw the Wright Brother’s memorial. I learned about the first flight at Kitty Hawk. I learned how Outer Banks used to be a remote sand bar before people built it up for tourism. 

Lolo and Lola had a big party. I was so proud of them. They have been married for 50 years. We had a surprise party where we all wore the same shirts. There was a beautiful cake. People gave toasts. Lolo gave a moving speech. I saw people cry. I think he is right about the importance of being able to get together. We later ate and took pictures.

I loved my trip to outer banks. I will always remember the good times with my family.

Copyright 2017 Philip Reyes.  All rights reserved.