Regulating My Body

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.

Copyright 2017 Philip Reyes.  All rights reserved.

Happy Thanksgiving 2017

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.

Happy Thanksgiving! 

Copyright 2017 Philip Reyes.  All rights reserved.

Rocking

My body loves to sway.
Motion calms me every day.

Mean to make my body still.
But my body's nature fights my will.

Music all around me really moves me to its rhythm.
I freely filter my world as light separates through a prism.

Flowing notes give way to good beats.
My hands must tap a jumping repeat.

Being lost in waves of healing.
Music is felt in each fiber of my being.

Copyright 2017 Philip Reyes.  All rights reserved.

Thoughts on the Movie Deej

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.

Typing a question to Deej himself! 

 Copyright 2017 Philip Reyes.  All rights reserved.

My Family

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.

 Copyright 2017 Philip Reyes.  All rights reserved.

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.