Tuesday, October 30, 2018

Peace is Hard to Find

Peace is very hard to find. Watching, waiting for my mind to answer questions. Why can’t I act normal? Why am I so fearful? Why am I not able to do the simplest things? Lots of questions. I am heaping many questions on God. I have the school of great teachers. I can learn but the beast that is my body makes me really hard to manage. It addresses every impulse every second of the day. I am tired of my body. It gets me in trouble all the time. I am always scared of its next move. I am really so embarrassed by its actions. I wish I could be seen by my thoughts instead of my actions. But we live in a world of appearance. I would like to be normal in my body but still have my autistic soul. 

Philip

Copyright 2018 Philip Reyes.  All rights reserved.

Saturday, October 27, 2018

Sensory Trouble

I have been having problems typing lately. I can still type with mom but I am no longer able to type at school. I am becoming more distracted by my sensory world. I feel trapped in my thoughts of madness. I see very many meaningless details. I feel every annoying itch. I hear the meaningless sound of everything competing with my teachers.  I get overstimulated. 

I need to get myself in the right zone to think for school. Leaving my sensory world is important so I can learn and make my words flow. The words can’t surface in the storm. I need an anchor to keep me from getting overwhelmed by the hurricane of stimuli. The anchor is my aide. I need to trust she will guide me out of the storm and keep me focused on the task.  I mean to learn to be better at managing myself at school. But I am not doing well yet. I need even more support than I needed last year. I am calling on God to help me be able to get through this hard time in my life. Please pray for me. 

Philip

Backhuysen, Ludolf - Christ in the Storm on the Sea of Galilee - 1695


Copyright 2018 Philip Reyes.  All rights reserved.

Saturday, October 6, 2018

Trapped

I am locked in my mind
Cannot bail out my thoughts. 
I try to say how i feel 
but my mind is not carrying messages out today.  
Waiting for the gates 
Of my mind to be  
Thrown open
Wide. 

Copyright 2018 Philip Reyes.  All rights reserved.

Friday, August 24, 2018

Why I Advocate

I am being an advocate to help others like me achieve living a life with the chance to communicate with his or her own words. I was not born with the ability to speak freely. I was not born with a body that cooperates easily. But I was born with a thinking mind. I was misunderstood for years because my inabilities masked my intelligence. I became like a prisoner of my own silence. I am now free because of RPM. 

I tell my story because I am not the only autistic person who thinks but can’t talk. I am convinced all nonspeaking autistics have thoughts they would love to tell if they could. That’s why I advocate for my nonspeaking brothers and sisters. 

Imagine if you could not talk or write on your own. How would you feel? You would feel enormous frustration and sadness. That’s how I felt because no one really knew me or accepted me as I was. No one thought autism was ok. Everyone saw it as bad. Mom was so depressed because of me. But now Mom is so happy because she now understands.  

I know not everyone is an advocate. That’s ok. I am an advocate because my life was saved by learning to communicate by spelling. I cannot remain silent about this when lives are at stake. 

Old ways are eventually abandoned for better ways. Some will fight for the old ways but in the end they will lose. May you find yourself on the winning side of history. 

 One of the self-advocates presenting at Motormorphosis 2018




Copyright 2018 Philip Reyes.  All rights reserved.

Tuesday, June 19, 2018

Freedom of Speech for Everyone

I am happy people are writing ASHA. We need to come together as individuals, supporters, and advocates who want to see everyone’s right to freedom of speech protected and preserved. 

I think ASHA would be violating its own ethics if it were to pass its proposals on RPM and FC. Peace is being able to express myself in writing. I am free to use my own words when I type my words. I don’t need to worry about saying the wrong word or not being understood by my poor enunciation.  

Typing is better than PECS and picture based communication.  I don’t think in pictures like Temple Grandin. I love word forms of communication. There are so many words to choose. Each has a little different meaning like delicious and savory. I like to have full access to all the words at my disposal. Pictures don’t allow this freedom. I can’t distinguish between a good day and one that filled me with awe watching God paint the sky with luminescent pink, orange, and glorious beams of sun bursting through majestic clouds. I was made to express myself in my way no matter if it is different than the majority. No one should have the right to stop me or anyone else from communicating. 

I have been listening to various letters written to ASHA. Some are passionate. Others are logical. I love that people have different personalities that come out in the words they choose. I want all people to be able to express themselves. With RPM we learn to express ourselves showing who we really are in our personalities. I am writing to keep my voice and protect the future of freedom of speech. 


Monday, June 11, 2018

An Open Letter to ASHA

The following letter is in response to the proposed policy on Rapid Prompting Method (RPM) drawn by the American Speech-Language-Hearing Ad Hoc Committee on Facilitated Communication (FC) and Rapid Prompting Method (RPM).  The proposed policy can be read here.

Hello ASHA Committee, 

My name is Philip Reyes. I am an RPM user. I am writing you to reconsider your position on RPM. I cannot communicate my ideas without someone to help me in various ways. I need help to start, stay on track, get through impulsive loops, and calm me so I can spell my thoughts on a letterboard or keyboard. I am asking you to put yourself in my shoes. I would be trapped in my own mind if not given RPM. I have tried many other methods to learn to communicate: ABA, speech, OT, Alt-Chat, and PECS. I was not able to make more than a few simple requests using those methods. I wanted to say much more. I was frustrated most of the time. I could not do much in school. I was made to do very basic lessons over and over without hope I would advance. I never want to return to those methods because they did not work for me. I could not express my true thoughts and feelings with them. 

I fear that passing this proposal will take away the support I have at school. I have made so much progress at school. I started at regular public school in grade five. I am happy with how far I have come. When I started, I had lots of meltdowns and anxiety. I had poor self-regulation. I was not good at communicating. I started in all special education classes except specials. I slowly got better at spelling with everyone and regulating my body. I got to add more regular classes with my neurotypical peers. I got to have more normal experiences. I even walked across the stage for 8th grade graduation and got to go to the dance. I am now finishing my Freshman year in high school. I have two amazing aides who support me so I can participate in regular classes and take the tests. I have teachers who believe in me and cheer for me. I have gotten better at sitting calmly and controlling my body. I even gave a presentation in front of my global studies class. I love school so much. 

I fear the proposal will prohibit educators from working with me unless I can type completely independently.  This may take me a very long time.  I cannot waste my life while trying to become perfectly independent. 

I urge ASHA members to do what is humane and good. Think of me and the many others who can be given a voice and a better life because of RPM.

Yours truly, 
Philip

If you would like to contact ASHA to voice your support for RPM, here are the ways they can be contacted:

  1. CONTACTS
    Postal Mail
    American Speech-Language-Hearing Association 
    Attn: Board of Directors
    2200 Research Boulevard
    Rockville, MD 20850-3289 USA


    Email 
  2. ASHA Board of Ethics: ethics@asha.org
  3. ASHA Governance: governance@asha.org
  4. ActionAlertASHA@gmail.com






Thursday, May 3, 2018

Energy

I feel people’s energy all the time. It comes from their emotions. I try not to let negative energy affect me but it does. Positive energy has only positive effects. I feel good when people are happy and positive around me. But I feel very bad when people are tense or anxious. It leaves me energy drained. In a place where there are lots of people, I especially get drained. I feel overwhelmed by the mass of people with so many loud feelings. They can be feelings of joy, discomfort, or even impatience. The loud feelings all mixed together in a big crowd are painful to me. I can now join in on happy group events like church and movies.  Mostly people have relaxed energies there. Some crowds are harder. When I went to my sister’s graduation at the Big House in Michigan, I could feel so much mixed energy- people were so cold, tense, but also proud. I felt sick and queasy because the energy was so loud and mixed up. I had to leave no matter how much I wanted to stay. I did better at Ana's indoor engineering ceremony. It was probably because it was warmer and people were more tired and relaxed by the afternoon. 

People may wonder if they can control their energy transmitted to someone like me. Yes they can.  If I am causing you stress, you can choose to let your anxiety show or you can show compassion. You may lower your voice and calm down by slowing down. Be patient and tell yourself that making a person feel loved is the most important to helping us feel regulated. It means a lot when people decide to be positive and loving. 

At Albright-Knox Museum

Copyright 2018 Philip Reyes.  All rights reserved.