This is the story of a boy who could not talk, but learned to make his thoughts known by spelling on a letterboard and typing. This is his path from silence to communication. Nothing has taught me more about faith, hope, and love, than being a parent of a child with autism. God is my source of wisdom, but Philip has been my greatest teacher in fleshing out God’s word in my life.
This year we went back to Mexico. It was awesome. This time my sister Ana joined us. She is a senior at University of Michigan. She was able to get away from her classes. She is going to medical school in the fall. I love when she is with us. Ana is fearless in so many ways. She always talks to everyone. She is capable of many things like going on missions trips, being a leader of globe med, and getting high grades. Ana is a great sister to me.
Ana and Me
Me and My Siblings
I am lucky to have an awesome family. My family is very close. My family has fun on vacation every year. Lolo and Lola make our family close and keep us together. They are most loving and kind. My Lola makes me feel so loved and respected. Lolo is so generous.
Lolo and Lola
My Aunt Kit and Uncle Mike are both really cool. They make vacations organized and they make lots of friends. My cousins Tommy and Roger are very playful. They follow me around so I am never lonely.
Uncle Mike, Aunt Kit, Tommy, and Roger
My brother Carlos is fun. He is always making jokes and funny faces. He played soccer and water polo. We celebrated Carlos’ 18th birthday there. The waiters sang to him. Lia is being snobbier but I still love her. Uncle Mike’s parents also came. They are so nice and understanding. Mom and Dad make sure I can do lots of things with everyone. They took us mini golfing and swimming at the big pool and the beach. I like swimming and going to the shows. My siblings played lots of games but it is hard for me to participate in team sports. I would have liked to go see some Mexican culture like we did last year when we saw Chichen Itza. Learning about culture is interesting to me but the best thing about vacation is spending time with my family playing.
I sometimes have problems with regulating my body. Regulating means keeping my body calm and able to function. Getting dysregulated is most stressful. I get dysregulated easily. I am dysregulated by my senses. My eyes see lots of details. I get so very many pictures in my mind. My ears hear sounds all in one volume. Loud. My sense of touch is messed up. I am too sensitive with some touches. When I have to go to the dentist I have anxiety because my senses become heightened. I have a hard time with people having to touch me to cut my nails or hair. I have a hard time with people touching my teeth or examining my body at the doctor’s. I feel like I am being tortured in the same way some people are tortured by tickling. I lose my ability to act rationally because it feels like I will die of fear. The senses of taste and smell do not bother me as much.
Proprioception is my biggest problem. My body does not feel where it is in space. I make many movements I don’t want to make but I am compelled to do it so I can feel my body. I must tap or twirl something in my hands to feel them. I often rock or pace to feel my core. Independent motor planning of my body is difficult for these reasons. Making my body obey new motor commands is practically impossible without outside support of a trusted helper like my mom. I need someone to prompt me to stay on task and make sure I do it. I need someone to redirect me from stims and things I do automatically. The things I do to regulate my senses are the same things I need prompting from to communicate and move in a goal-directed manner. I am meaning to improve with sensory integration so I can become more independent too.
I am making improvements on my own as I get older. I have learned to endure noise better. I can go into auditoriums for concerts and shows. I wanted to be able to come to my siblings’ concerts, games, and meets. I challenged myself to make it through even though I felt uncomfortable. I had to make myself feel the echoes, energy from the crowd, and fast moving sights. I found out I could get used to it. I am glad I can now attend many events without too many problems. I can now tell myself to remain calm. Many times I can do it but not all the time.
Making improvements in self-regulation is one of my goals in the New Year. I hope to try working with an OT to find ways to get my senses working more properly so they help me be more independent and easy going.
This year I am thankful for many things. I started high school at North. I have been challenged academically and as a person learning to be accepted in the world with a disability. I am thankful I am able to rise to the challenge with many people's help. My school is awesome. They believe in me and want me to succeed. Day to day I want to try my best. A good school brings out my best. I love my school. Mr. L is really encouraging. He begins the day with good talks. I have been learning to read independently and take tests at the computer. I am thankful for my aides at school. Mrs. S and Miss R help me take part in school. I would not be able to participate without them. My aides are very good at motivating me to do my best and do more independently.
I am really getting better at many things. I can sit through classes, church, and performances without being disruptive. I can handle many more situations. I am brave about new things now. I went to my Homecoming and had fun. I think I have been able to do more because I have been given many opportunities to try new things. I also have so many caring people in my life.
I am thankful for my family. I am thankful for my mom. She is always pushing me out of my comfort zone. I love her for it because she helps me not waste my life. She goes beyond what most moms do by helping me be an advocate for change and acceptance of people with disabilities. I am meaningfully living my life. I am thankful for my dad. He takes me out to do fun things. He also supports our family. I am thankful for my brother Carlos and sisters Ana and Lia. They make life fun. I am thankful for Lola and Lolo and my Aunt Kit, Uncle Mike, Tommy, and Roger. I am thankful for Grams and Dumpa. I have the best family. They make my life happy. I am very loved and blessed.
I saw the movie Deej recently. I loved it. It is a documentary about DJ Savarese who is a nonverbal autistic like me. I am following in his footsteps by going to regular school and being included. DJ received a good education with the help of a communication helper. He was meaningfully included. He participated. DJ learned to teach his neurotypical classmates that just because you can’t speak doesn’t mean you can’t think or communicate another way. DJ types like me. Like me he needs assistance to initiate, keep going, and not get off track. DJ wrote a play about his autism. His classmates acted it out. I thought it was great that DJ could teach his classmates this way. I hope I can make my classmates understand autism too. It is really peace to my soul to teach others that we who cannot speak are deep thinkers. We just have bodies out of synch with our minds. Meaningful lives are found when we can connect with others. Having effective means to communicate builds bridges linking people’s hearts and minds.
Deej was able to graduate from high school. His walk across the stage was my favorite part because it is my goal to get a high school diploma. I graduated middle school last spring. It was one of the best moments of my life.
DJ went to college at Oberlin. It was a lot of hard work. I mean to be a writer when I finish high school. I’m not sure I want to go to college. But I think everyone should set their own goals. I love that DJ's parents always supported him in reaching his goals. My parents also support me. They make my life more like a neurotypical's life by making me able to do regular things. I’m not typical though. Being autistic is my destiny. Inclusion should be for all on the basis of our humanity.
I am very blessed by my family. My family goes to great lengths to make my life better. I would probably be in my own world if it were not for my family pulling me out of silence. The reason I can be a part of the world is because they support me. Mom is my primary helper and support. Hearing her voice calms me to be able to talk with her best. Mom is the reason I can communicate. I am learning to be able to type with others. My family is my trusted circle. I can be myself completely. I can really stim if I need to and its ok. I can practice new things with Mom. I can try things without fear of failing. My family loves me no matter what.
I love doing things with my family. My family does things together like bike rides, going to sports events, vacationing, and going to church. I enjoy my time with my family because it is fun and I can be with them making meaningful memories. I am living my best because my family makes time for me, believes in me, and acts to make my life better.
I really like going out with my brother Carlos. He takes me to high school games. I like hanging out with him and his friends. Carlos is fun. I like being around him because he makes me happy. He is very cool.
Me and Carlos going to watch a game
My sisters are nice and talk to me. They can use my letterboard with me. Lia is fun. She likes to jump on the trampoline with me. I think Ana is the smartest of my siblings. She is an engineering major and wants to go to med school. Ana is patient. She likes to talk to me when she comes home from college. I am lucky I have them. In my family I am the third child. I like being in the middle because I have older siblings to look after me and a younger one who will lag behind to be with me longer. I am an integral part of my family.
Visiting Ana in Michigan
Biking and catching Pokemon at UB
I hope to help my family more as I get older. I would like to have a job and earn some money. I hope to be a writer and teach about autism. I would very much like to be a part of my family’s business of teaching people RPM. I am glad my family gets me and includes me. They are the best.
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 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.
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!
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.
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.
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