Tuesday, July 25, 2017

Summer Vacation- Part 1

I like vacation because I get to do things with my family. I love spending quality time with my family. It is time to catch up with one another and do more things together.

I went on a two-week trip with my family. The first week we went to different colleges for my brother. I liked going on the tours. Our first stop was Pittsburgh. We saw two schools. The first was Pitt. I liked the tall tower that marked the campus. You could see it from far away. I liked how the rooms in the tower represented different countries. Pitt blended into the city. The students were friendly.

Driving into Pittsburgh

Right next to Pitt was Carnegie Mellon. It is more for students who have a strong passion for what they want to study. My brother does not yet know what he wants to study. I learned Andrew Carnegie, the steel giant of the Industrial Revolution, was the founder of the school. He merged the school with the Mellon Institute. Philanthropy was important to Carnegie. He wanted to give back. Making a university was his way of doing good.

Walking around CMU

Pittsburgh was very hilly. My dad got us lost in the hills looking for a Mexican restaurant. Sometimes there were narrow roads on a steep hill. We finally found a cool hipster taco place. It was fun.

Finally the tacos!

We went to Penn State on the fourth of July. Everything was closed. The campus was big and pretty. It is a big football school. Then we went to Bucknell, Lehigh, and Villanova. They were also closed. We arrived in Philadelphia in time for the fireworks. I liked that we were in the city where the Declaration of Independence was signed. I looked for the place it was signed as we drove in. Philadelphia is one of my favorite cities because of its place in American history.

A quick stroll around Penn State and Lehigh


We went to Penn's landing to see the fireworks. It was crowded. We met a man in a wheelchair. He was cool. I wish I talked to him. My mom introduced us but did not bring my letterboard. My mom learned he was part of ADAPT and protested the health care bill in Washington DC. I listened to his stories. He said to enjoy life everyday because it can be taken anytime.

Making a friend at Penn's Landing while waiting for fireworks

The fireworks came suddenly. I hate the sound because it startles me badly. It is like being shot. Even though I know I am not in danger, I can’t help but freak out and try to escape. This happened again. I had to get further away. I didn’t want my family to miss out on the fireworks so I tried hard to endure the fireworks. I became more used to the sound after awhile. The fireworks dazzled my sight. They were beautiful. When they were done I longed to see more. I was overjoyed to have had the time to celebrate with my family. I think Washington DC might be the place to go for next year.

Watching the fireworks further back on the bridge

The following day we took a tour of Temple University. It is in Philadelphia. Our tour guide Jay was funny. I thought it was a very cool school. Philadelphia is a good place to visit because my friend Tommy lives there too. After visiting Temple we had pizza with Tommy and his family. Then it was time to go to Virginia.

 Touring Temple

Carlos with the Temple Owl

 I will write about Virginia in the next installment of this blog post.

Copyright 2017 Philip Reyes.  All rights reserved.

Friday, June 23, 2017

Middle School: My Transition to Society

Simone writes: Hi Philip, my son is turning 15 now and he will start attending his first regular class next school year.  Can you share your experience and also give us some advice based on your own transition?

Transitioning from my autism school to regular school was a long process. I wanted to learn more interesting things than my autism school had to offer. I looked for more challenges to keep my mind sharp and active.  I wanted a regular education. I wanted to be like my siblings getting interesting things to learn about.  

I am learning to be patient about reaching my goals. Being in a body like mine is difficult. My body is geared as one built for another planet besides Earth. I have a difficult time feeling my body in space. I feel as if I don’t have weight.  I need a lot more sensory input than most people. I get input by moving, tapping, sniffing, and deep pressure to my body. Once I get calm, I need less input. Teachers learned that I needed sensory input throughout the day so I could feel calmer at school. I was allowed to take walks with my weighted vest before my regular classes. I had times I could have a break for listening to music, rocking on a chair, or smelling nice candles. It was a good thing to have sensory breaks.

I have made a lot of progress throughout my time at Heim Middle. When I look back when I first started in the middle of 5th grade, I am amazed I was not kicked out of the school. I talked less than almost all my autistic classmates. I could not use my letterboard well for my teachers. I got so anxious around everyone because I felt like I was a burden and a nuisance. This led to many meltdowns during my first few months at school. I was frustrated because I wanted to show I was smart and belonged there. But my body was like a wild bull not wanting to obey anyone. I would even make my teachers frightened by my aggressive actions that happened when I became overwhelmed with frustration or anxiety. I am fortunate my teachers put up with me while I was adjusting to a new school.

I got better at managing my body eventually. I learned to realize that even though I felt my body's negative sensations due to anxiety or stress, I could talk to myself about letting it pass without as much negative behavior from me. My mom and I started a morning routine of reading Bible verses and a devotion about it. I would write a morning report about it and post it on Facebook. I came to the realization that I could sit still by concentrating on God’s word and what I learned from it. I could calm my worries.

When I was able to relax more, I started to type much better with teachers. I got used to each person’s style of working with me. I wanted to work harder to be able to participate in regular classes. I was not able to go regularly until grade 7 when I started science, social studies, and technology. I learned to advocate for myself by typing my intentions at my IEP meeting. I almost was denied the opportunity but my speaking up in person made the difference.

My body is still lacking control though I have come very far. Taming my body is more than I can handle alone. That is why I needed an aide at all times. An aide keeps me on task and makes sure I do not get too distracted. I could not get through my days without my amazing aides. I learned to be more disciplined with my body but I know I must continue to work hard at this.

Impulsive behaviors sometimes set back my progress. I sometimes get in a phase of impulsivity where I do irrational things like flipping light switches rapidly or slamming doors. I know it annoys others a lot but I feel compelled to keep doing it. I have learned when I get impulsive, I have to stop what I am doing and question myself why I am doing it. I can sometimes make impulses go away faster now.

I have just finished 8th grade. I participated in my graduation ceremony. I walked across the stage by myself to receive my certificate. It was a very proud moment for me. I even went to the dance after. It was fun. I am going to miss Heim very much.

I am both excited and nervous to start high school.  It will be brand new with different teachers and aides. It is going to be another adjustment but maybe I will be more able to adjust better now. I have gained a lot of wisdom these past few years. I want my high school experience to be as good as middle school.  I hope everyone there will believe in me like my teachers in middle school did.


Copyright 2017 Philip Reyes.  All rights reserved.

Wednesday, June 7, 2017

Emotion Packed Situations

I want to tell you about emotion packed situations. I am bad at controlling my emotions sometimes. I can get emotional talking about myself when I have bad feelings. I am really trying to become more steady emotionally. Ascertaining my situation more logically helps. When I talk meaningfully to myself and try to be rational about how things are, I can peacefully make light of my feelings. I sometimes feel badly that I can't talk. But then I remember I can communicate and am better off than I used to be. I make light of my feelings by learning to make myself see how much I have progressed.

Emotional crashes happen when I am having bad thoughts. Bad thoughts can be anger at not being like everyone else. I can pity myself for not being able bodied or able to speak. I cry out because I can no longer hold my bad feelings in. I teach people about my autism to make light of autism and deal with my emotions better. Writing clears my mind and helps me think more thoughtfully.

Sometimes emotions come on strong. I am not always able to handle them well. I get breathless when I get emotional. My anxiety rises. I get tense. Tension in my body gets me badly stressed. I have to release tension. Sometimes it is by having a breakdown. I have to cry and be alone. I mean to let out all the tension. When I am done I can be calm and relaxed again.

Emotions make us human so they are necessary. I know I must accept all the feelings bad and good. Caring about others requires us to feel empathy. I would never want to lose my feelings. But I can get better at thinking through difficult emotions so I can be more levelheaded. I mean to keep improving myself. Writing helps me a lot. Learning to express myself in words gives me a positive way to deal with my feelings.

Copyright 2017 Philip Reyes.  All rights reserved.

Monday, May 29, 2017

Interacting With Me

Rick writes:  What I want to know is how can us neurotypical people connect better with autistic people?  That is, how can I make autistic people feel safe and accepted when an autistic person may be anxious.  For instance if you wanted to talk to me, how can I help you understand that I want to communicate with you and it's ok if you need to stim or to wander or communicate using a different method.  In other words, how can I help an autistic person feel safe in that they can communicate with me and I will accept the communication and intelligence as well as the autism.

To Rick,

I am glad you asked that question. It's good to know you want to make autistic people feel safe and accepted. I think many autistic people are shy because we are different than most. I have difficulties in making friends because my communication is so slow and labored. I also need someone to help me communicate by holding my keyboard and prompting me to type. People wanting to talk to me have to be very patient. Most people don't have time to wait for me.

People show they are really interested in me if they have patience to interact with me. They show patience by waiting for me to spell even if they lose time because of me. I like when people talk to me normally even if I don't respond to them. I know what is being said and how to respond. I just need time to organize myself to type it out. This sometimes takes awhile depending on how my body is cooperating.  I need more prompts if my body is acting more distracted. I need people to realize I still want to communicate even if I am struggling. I may look like I don't want to be bothered. But it is my mind trying hard to get my body to move to communicate with you.

I love people when they give me the time to talk with them. Learning to take the time and patience to interact with me is showing you really care to get to know me.

Me and Ranger Dan. 
He biked with me so I could be part of the annual bike trip with Battalion.

Copyright 2017 Philip Reyes.  All rights reserved.

Thursday, May 11, 2017

Early Days of RPM

Sharolyn wrote:  I want to hear about the early days of RPM and what made it click for you.

To Sharolyn,

Thank you for your question. My early days of RPM were very difficult. RPM is a great learning method but it was really hard to start. I started when I was 9. For so many years I was assumed to have an intellect of a toddler. I was not challenged to engage my mind. Instead I had my senses to entertain me all day. At school I learned nothing I did not already know. So I taught myself to read the signs on the wall. I stimmed my life at home by tapping my hand repeatedly on everything. It helped me feel alive and not just a passive object taking up space. I could escape in my mind to other places where I would have a voice. 

I remember my first time doing RPM with Soma as being the most significant moment in my life. Soma was the first person to believe in me. Her ability to see my intelligence despite my outer appearance allowed me to follow her teaching and respond as my mind wanted. I felt so much joy from being liberated from peoples’ assumptions I was not smart. 

When I came home I was frustrated I could not respond to Mom like I did with Soma. Mom did not know how to prompt me to help me keep my mind and body engaged. I could think of what she was saying but could not get my body to move as my mind directed. I became frustrated and tried to escape the lessons. My mom got upset many times and yelled at me. That made me feel so stressed. But mom persisted. Dad made me my own little workspace with a small table. It was easier for me to concentrate and not escape. Eventually I got better at sitting through lessons.

RPM taught me how to leave my own sensory world to actively participate with others for a while. I first had to learn how to listen actively to respond to questions of me. Expectations that I would meet had to be meaningful. I was tired of being asked the same questions over and over again. Questions like how many, what color, and what is it. These were the questions I got all day long at school. I listened better when I heard something new and interesting. Nothing could be better than learning about God. Mom headed toward the right direction when she started teaching me about God. 

After I got better listening I had to learn to bring my body under better control to point to what I wanted to answer. RPM helped me by getting me to think more and plan my movements more carefully. At first it was hard. I had to engage my mind and body together to learn and show I was learning by picking the right choices and trying to spell. Getting a good lesson helped me listen better to Mom. Then I would learn to focus on getting my hand to choose the right choice. At first my hand would move without much control. It would sometimes prefer to choose one side. I am easily drawn to the word I heard last. My hand would pick the last choice. Things started to click when my mom started to teach more interesting lessons instead of quizzing me on basic concepts. I made progress by a lot of active engagement of my mind. This allowed me to leave my sensory world. Learning to think through autistic impulses is hard work. Autistic impulses envelope me in a purely sensory realm where I am alone in my world. I need high amounts of prompting to keep me engaged with you. I want to be a part of what is going on but I am passive because I am not able to get out of my sensory world without your help directing me to leave so that I can interact with others. I am learning to better join the world today. I am practicing by going to school with typical classmates and going out in the world more. I stay more peaceful than I used to. I think RPM has a lot to do with it. RPM is a life changer. It is worth the struggles in the beginning. It gets easier. 


 Soma and me at first RPM Camp Oct. 2012

My old workspace

Copyright 2017 Philip Reyes.  All rights reserved.