Thursday, March 26, 2020

Quarantine Thoughts

It is a time of self-isolation. We need to do this for protecting others so we don’t get them sick. I am thinking about my time in quarantine. I think it has been good for me. I needed time away from normal life to get a chance to find peace. I have made rest a priority during this time. I have needed to rest for a long time. I want to be able to have energy to be able to do the important things in life. I was so exhausted all the time trying to meet demands of others and improve myself. I could not rest so I broke down. I was on edge all the time and I would get set off by any stress. Soon I was even being angry and aggressive without provocation. I needed to get out of the train that was headed to nowhere good. I am freeing myself to slow down without feeling guilty. Quarantining will save many lives from Covid-19. It may also give some people a much needed break from a too-busy and stress-filled world.
My 17th birthday in quarantine

Thursday, February 20, 2020

Choosing My Path at School

I am really stressed about next school year. I have to plan my school path for transition. I am going to be an adult soon. I won’t be in school much longer. I won’t go to college because I am not getting a diploma. I am going to school for life skills. 

I am preparing for my life. I am going to have a good life doing things I care about and want to do.  I care about advocating for people to have a voice. I want to do this by my writing and by personally speaking at forums. 

At school I am facing decisions about my school program. Some say I should do more vocational training like auto shop. But I am lousy at doing skilled labor. My body is the problem and my mind is my strength. I would just get more anxious having to do things that are hard and not interesting to me.

I would like to keep learning interesting things with my mind.  I have enjoyed my electives, especially Current Events. They teach me good skills for writing and listening. I would like to continue taking electives. I am interested in more literary and social studies classes. I would enjoy those more than making crafts or putting things together. 

I am going to tell my school to please keep me in academic classes. I can always learn skills later on.

Wednesday, January 29, 2020

My Trip to the Philippines

I made lots of memories in the Philippines. My best vacation ever was going to the Philippines this holiday break. I was able to see where my Lolo and Lola are from. I met my relatives on my mom’s side. 

I flew on an airplane for 17 hours straight. Being in the plane was like going in a time machine that added hours to your life. I got my days mixed up. When we landed in Manila it was Sunday morning but it felt like Saturday. 

We were greeted by Tito Randy, Tita Beth, Tito Edgar, Tita Marisa, Auntie Zening, and her driver. We drove in three trucks because there were so many of us. We drove in lots of traffic. There were lots of motorcycles too. They drove in between the cars. It made me scared. I thought they might get hit.

We made our way to a nice resort in Subic Bay. It was beautiful. We went swimming and relaxed by the pool.  We met nice relatives.

Then we drove to Nueva Vizcaya where Lolo and Lola were born. We met lots of relatives. I saw many motorcycles with sidecars. They would carry whole families on them. People were everywhere outside going to market and walking around. 

We celebrated Christmas Eve at 2 parties. At the mayor’s party there were kids playing Christmas carols on their instruments. There was lots of food. Everyone was nice. But I was really beat from meeting so many people. I am glad I did though. I did not mean to get cranky but at times I wanted to hide. 

On Christmas day I went to a big party at the Lopez farm. It was in the mountains. It was beautiful and green. There was lots of food and good singing with the karaoke. We later had halo halo at the restaurant.

The next place we visited was Boracay. It is on a smaller island. We had to take a plane and a boat to get there. It had been hit by a typhoon before we got there. Damage to trees and buildings could be seen as we drove to the hotel. It was also crowded with motorcycles and tricycles. Power went out a lot. The beaches in Boracay were very pretty and blue. I enjoyed the water and sand. I also thought the boat trip to another island was fun. I liked riding on the water and feeling the wind. Action and adventure was really exciting. Boracay was magnificent.

Finally we went to Manila. We stayed in a fancy hotel on a high floor. Manila was big and busy. We ate at nice restaurants. We shopped in the biggest mall in the world. Catching up on sleep was nice because a lot of activity gets me too drained sometimes. Dad and I slept in a few days.

One day we drove to the Taal Volcano. It is a beautiful place. There is a lake formed from an old extinct volcano. Inside the lake is a volcano that is active. It wasn’t erupting the day we visited but I learned it did one week later. 

We had New Years in the hotel. From our room we saw lots of fireworks. It was awesome. Fireworks are pretty but not their sound.

The Philippines is a lovely place to visit. I am so glad I visited and met many relatives. I hope to go back again soon. 

Monday, December 16, 2019

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

Tuesday, September 3, 2019

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

Thursday, August 29, 2019

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.  

Thursday, May 16, 2019

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.