Advocacy Outside My Comfort Zone

I am a shy advocate. Being around people that I don’t know well is hard for me. I have social anxiety because I cannot talk or control my body well. I am dependent on my mom or aide to assist me for everything. I am very aware of how different I am from people around me. Autism is very isolating this way.

I am an advocate mostly through my writing. I don’t have to be face to face to speak for others. I am more comfortable speaking through my writing. No one has to wait while I type one letter at a time. I don’t worry my autistic behaviors will embarrass me in front of others. That’s why blogging and Facebook are so important to me.

Recently I have stepped out of my comfort zone to advocate in person. These opportunities have come by request of others to speak at conferences or at more informal settings. Making myself do these talks has been good for helping people. Seeing people like me type shows I am for real. It gives people hope that even a person with lots of challenges can communicate alternatively.

I still have a hard time with public speaking. Sometimes my anxiety gets the best of me and I have fight or flight reactions. I hate when this happens. As much as I want to get myself to cooperate, I can’t. Fear and anxiety are my biggest problems, but the more I face the fears I want to overcome, the more I will be able to handle them better.

I am proud of myself for being able to present at a couple of autism conferences. I did not make a fool of myself. I actually did pretty well. I was able to overcome my fear somehow. Making myself try to speak on behalf of others so they can have a chance for a better life makes me bolder. I will do my best to help others in any way I can. My autism hinders me in many ways but it also makes me an advocate other autistics can relate to. I am going to keep rising to the challenges and do my best. 

 Presenting at my first conference, Motormorphosis 2018

With my fellow presenters Lisa and Grant

Meeting my mentor/friend and keynote speaker Samuel

In California for the first time Oct 2019- meeting Samuel and Dillan

Getting ready for the Spectrum of Opportunity Conference in California with Rhema

Co-presenting with Rhema and Henry

With Edlyn Peña, our leader and book editor 

Book signing (Communication Alternatives in Autism)

Interacting with new friends and conference goers

Speaking to local college students with Reagan

School Goals

I am going into 11th grade. This year I want to work on doing some more work skills. I am at the start of doing internships at school. I want to be able to use my body at skills that help society. I am hopeful that I can really progress in moving with purpose and gain independence. 

I also want to keep learning academics at school. I  will attend English and science with my neurotypical peers. I will also take classes in special ed with many of my long time friends. I hope I can type well with my aides. It makes school so much better if I can type well. 

Learning to be more regulated and handling myself better is my next goal. I think being able to be part of society with everybody included is important. I don’t always manage myself the best. I can get stressed out easily and occasionally have meltdowns or shutdowns. I have been doing exercises and sensory activities to make me more desensitized to stress.  I am continually making progress like being able to shave and better handling the dentist but I want to get even better. I want to avoid my fight or flight reactions when I feel overwhelmed. 

Lastly, I want to get better at writing and advocating. I am excited to promote a book I am in: Communication Alternatives in Autism in October. I will be presenting about supports at school. I am also proud to be a contributor on The Aspergian. It is making an impact on lots of people who don’t understand autism as a neurological condition. I also like the friends I have made with other autistic writers. Making autistic connections has been the best. It helps me feel I am not so alone as I often feel. I want to keep close friends with other autistics in my area and on line. 

I am certain many blessings will come to me this year. May they come to you too.

My sister and me on the first day of school

Independence through Dependence- Why I need a Communication Partner

This post was originally published on The Aspergian.  

I am a nonspeaking autistic teen. I used to be called non-verbal. Non-verbal is a misleading word because it conjures up ideas that a person who cannot speak cannot understand words either. That is farthest from the truth. The truth for me is that I love words and express myself most fluently with words. I just can’t say them. I can’t even type them completely on my own yet. I need a communication partner or facilitator to help me bring my words out to be shared with others. I realize this is hard to understand because most people take the ability to express themselves for granted.    

There are many autistic people whose nervous systems are really wired differently from the neurotypical. My senses are easily overwhelmed and need breaks from stimulation. Making the environment more bearable takes a lot of energy. I stim to block out some sensations that would cause me discomfort. Stimming works by stimulating a diversity of more pleasant sensations to distract me from noxious stimuli like electricity buzzing or babies crying.  

My ability to carry out motor plans is also messed up. Taking an order and obeying it fully depends on many factors to make it go right. I have to be able to get my body regulated first. My body needs to feel calm and present. If I cannot feel where my body is, I get very anxious because that is when my body starts acting out of control. 

I am not even able to make myself stop because it is like my body has a mind of its own. When this happens I do awful things sometimes like grabbing at people. People try to stop me but it’s a lost cause. My body must expend its energy before I can regain calm again. It is not just one thing. 

My body gets impulsive. Certain actions become hard to resist doing. Being alone makes it even harder. Sometimes a person being there to remind me not to do it can help. But sometimes the impulse is even too strong for others to stop. For example I have had impulses to unroll entire rolls of toilet paper and play with peoples’ tooth brushes. I know it angers everyone but I can’t make myself stop. Meaningful movement does not come easily for me. For this reason I still need people who can keep me regulated, calm, and stay on task to communicate.  

I try to communicate with everyone but some people are easier to type with than others. The people I do best with are ones who believe in my intelligence. They decide I am worth talking to even if it is hard or time consuming. A person who is kind yet firm, and extremely patient, is the best communication partner.  

Fearful helpers do not do well. I am very sensitive to that emotion and it makes me fearful too. Many people can’t assist me immediately because it takes time for me to get comfortable and in synch with each person’s ways of supporting me. 

Being learned in Rapid Prompting Method (RPM) is mandatory to successful communication partnership with me. RPM takes my sensory and motor challenges into consideration.  Teachers must presume competence to assist me in learning regular school work rather than repetitive drills. They use various strategies to keep my senses engaged to learning. I focus on what my aide brings to my attention so I can concentrate on what I need to and ignore the background. If left to myself, everything becomes chaotic and I get too overwhelmed to learn. 

Sensory aspects are difficult enough, but motor-control  challenges are equally difficult. When I want to say something, I cannot just say it. I am blocked from talking because my mouth refuses to say my thought. I can’t type it on my own either because I need to rely on cues to help me stay focused and not overwhelmed by having to organize every stimulus on my own. 

Waiting for my communication partner to give me the signal to start helps me to direct my energy to spelling and touching the letters to get my thoughts out. In RPM, answering questions about what I just heard helped me become good at spelling. I needed this practice to get better at bringing my more inner thoughts out. 

Communicating my inner thoughts is a lot of work for me. I have to isolate the thought I want to express from many other distractions. These distractions can be a sensation in the environment or in my body. They might be obsessive thoughts or impulses to do something else. For me to successfully win at communicating, I need an ally to help me not fall off the path my words must travel to exit my mind. 

All of this communicating  takes a lot of time and energy. Beating the alternative of silence is a monumental effort. Some people may criticize my need for support as not encouraging independence and being too hard. 

I ask you to consider how horrible the alternative is. 

Many people are still stuck in a silent hell in which they are prisoners inside themselves. Would you want this for yourself? The freedom of people unable to speak is worth every inconvenience  of dependency.  

My Body's Struggle

I am autistic and have dyspraxia. That means I have problems making my body move the way I want it to. This is why I have trouble speaking, writing, and using my gross motor skills to interact with others. Having dyspraxia is the biggest problem for me. It is what confuses people most and makes me feel the most isolated. 

My body’s behavior is a very poor reflection of who I am on the inside. I am seemingly a lost child unaware of what is going on around me.  I come across as not being smart or capable. I mean to be more helpful but I am barely able to make myself stay regulated to do much without being beckoned to stim or give into an impulse to relieve stress. My body is a saboteur to my mind’s true intentions. 

If my body were in control I would make it sit attentively in class. I would take the most interesting classes which for me are math and social studies. I would be able to write complex equations by myself and be able to solve them. I would want to learn to play the piano like Mozart my favorite composer. I would try out for the soccer team and have lots of friends. I would be very active in volunteering to help my school be a place that includes everyone because I know what it is like to be an outsider. 

Making my body cooperate is my life long struggle. I work on it by exercising to make stronger neural connections. I continue Rapid Prompting Method to build my communication skills with new people and get more independent. I have hope I will improve in my body. Rehearsing the future me in my mind of how I can be gives me the power to work hard and not give up.

Copyright 2019 Philip Reyes.  All rights reserved.

Rewiring My Brain Through Exercise

I am beginning to get more comfortable in my body. I started exercising like a baby does. I crawl on my belly. I crawl on all fours. I am hearing that I will make more brain connections my body needs to feel more regulated. I really believe it is working. I am getting stronger in my arms and legs. I can see changes in my arms. I get sore from exercising but at least I can feel my arms and legs. I am meaning to get over my fears too. When I get anxious sometimes I get paralyzed or I have fight or flight response. I get this way too much that it causes me to not be able to function well at school. I am learning that I may have retained primitive reflexes. If I can integrate them like babies naturally do when they go through developmental milestones, maybe I can be able to handle my fears and anxieties better.

Copyright 2019 Philip Reyes.  All rights reserved.

Resurrected Life

I am going to get a new body some day. When Jesus rose from the dead He received a brand new body. It would never decay. He showed that we would also be raised with bodies that won’t be dysfunctional. 

Lots of problems come from bodies that don’t work right. There are diseases that make our bodies sick and make us feel bad. Better medical treatment has helped us live longer but still we all must leave our earth- bound bodies some day. 

I have a body that is pretty messed up. It really has its own mind and does not do what I want it to do. It easily rebels my orders. It sometimes gets aggressive and costs me good relationships. I wish it would do what I want it to do. 

Jesus died on the cross to forgive our sins and give us a new life that would glorify God. I have received Jesus’s gift of grace and eternal life by believing in Him. I very much am looking forward to being in heaven with Jesus. I want to get a body that can be good and do what I ask. 

Heaven has to wait for me because God hasn’t called me home yet. For now I have to make here my home and use the body I have to God’s glory. I am faithfully trying to do my best to get myself to be the best I can be. That means sharing my story so people can understand autism and help others learn to communicate. Some day I hope to be able to do even more to help others. I will strive to use my whole life, body and mind, to serve Jesus who gave His life for me.

Happy Easter!

Copyright 2019 Philip Reyes.  All rights reserved.

Philip's Song

I am getting stronger.
Freer in my soul.

I am trusting God.
Gearing up to breakthrough.

I am persevering.
Daring to succeed.

I'm not going to stop.
My preaching is bold.

Copyright 2019 Philip Reyes.  All rights reserved.

Dominican Republic 2019

I went to Dominican Republic for February break. I have been there once before when I was 11. I am glad we came back. I made many good memories. 

I really enjoy being with my family. They got to be more together without being busy. I like having time to get away from having to be doing jobs and keeping busy. My mom made sure we had fun things to do. My dad made sure to make rest an important part of vacation. 

Many days I swam in the pool and walked on the beach. The weather was so beautifully sunny and warm. My home is so cold for many months. It is terrific to be able to go outside to be in nature with fresh air and sun warming your body. I love being outdoors because my body feels most relaxed. I feel most peaceful.   

My cousins Tommy and Roger were there too. I like being with them. They are lots of fun. They are very entertaining. I think they are great cousins. Aunt Kit and Uncle Mike are nice.  Lolo and Lola make me always feel understood and loved. Mr. and Mrs. Gough are kind to me. Lia is my dear sister always. 

One day we went to Santo Domingo for an excursion. Santo Domingo is the capital of the Dominican Republic. I enjoyed taking a tour of the first colonial city in the new world. I saw the castle of king Diego Columbus and an old fortress with cannons. I saw the first cathedral in the western hemisphere. It was very beautiful. I am glad I get to be able to be among other site seers even though I am autistic. 

I am getting to become better at traveling. Being able to see the world is really great. 

Copyright 2019 Philip Reyes.  All rights reserved.

New York City

Last weekend I went to Manhattan to see my sister compete in gymnastics. I learned about New York City a long time ago from a book mom used to read me. It was called My New York. In the book there was a girl who showed us her favorite places in NY like the Statue of Liberty, Chinatown, and Empire State Building. I wanted to go see those places. I tried to make myself enjoy the sensations of the city rather than hide from them. I tested myself by taking in the sights and sounds and smells and letting them go without letting them become overpowering. I found myself enjoying the loud sights of the city. 

I paid attention to the ethnic diversity all around me. My favorite thing about the city was seeing so many different cultures. We ate at Korean, Colombian, Italian, Filipino, and bagel places. Everywhere I walked I heard different languages. I loved seeing so many different people living together.  

Filipino fast food at Jollibee's

I met my mom’s friend Nate. He works at the Empire State Building. He showed us around his office. It was really cool. I saw the city from high up. It was full of tall buildings. I could see very far. I could see the Statue of Liberty in the distance. It must have welcomed so many people to the USA. I love that my ancestors came to America. I think it is the best place in the world because anyone can make a good life here. 

 Mom and Nate

 View from Empire State Building

I saw my first Broadway show. It was Aladdin. It was amazing. I loved the Genie. He was so funny. There were some special effects. It looked like magic. I hope to see more theater in the future. 

Being in New York City was good for a weekend but I don’t think I could live there permanently. I think there are too many sensations to feel all the time. I would never get to feel totally rested. I mean to visit New York again. There is so much more to see.

Copyright 2019 Philip Reyes.  All rights reserved.

New Year's Resolution 2019

This year I want to get fit. I made my New Year’s resolution to exercise everyday. Practicing moving my body purposefully is learning. I have to learn both for my mind and body. Moving my body the way I want it is my biggest challenge today. I mean to overcome this challenge like the many challenges I had in the past. I have overcome not being able to express my intelligence. I have overcome being excluded from my public school. I have overcome some of my sensory challenges so I can handle going out more and having fun. There is hope I can overcome my wild body too. Being able to control my body will help me so much. I could make more meaningful actions to become more independent. I could get more control to stop impulsive behaviors. I would be more confident because I wouldn’t have to worry about my body embarrassing me with its crazy antics and weird tics.

My mom has been learning about exercises and reflex integration to help mature my brain so it works better. I believe my body will make more necessary neural connections. I am also trying to strengthen my muscles by lifting weights.  I want to feel my body in space better. I feel my limbs better with weights. More muscle should help me feel my body better. 

Meaningless body movements make me mad. I am now destroying all my shirts by mouthing them. I don’t want to look like a homeless person in rags but I am powerless to stop my habit. I want my body to listen when my mind tells it not to bite or do other annoying things. Perhaps I can get better at impulse control with my new exercises. 

I love exercising because it makes me feel good. I hope to meet my goals. I mean to give it my all. 

Copyright 2019 Philip Reyes.  All rights reserved.