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.

My Disobedient Body

My body is like a very disobedient toddler. My mind is like an impatient mother, wanting her unruly child to do what she says. Tonight my dad asked me to set the table for dinner. My mind knows where each person sits. I give myself the order to make plates go to each person. I plan to carry out the order from dad. However, my feeble body balks at this order. It wants to put all the plates on one end of the table and the cups on the other end. I end up looking like an idiot who can’t understand the concept that everyone is supposed to get their own place setting. I want my body disciplined to follow the rules. How do I get my body to cooperate? This is my biggest struggle.

Copyright 2017 Philip Reyes.  All rights reserved.

Biking For Life

I love to ride my bike. Learning to ride a bike is one of the best things I ever did. I learned last summer at iCan Shine bike camp (click here to read more about it). I went for one week. I did my best. I learned to ride without training wheels. It was exhilarating. When camp was done, mom bought a bike for me. I loved my blue bike. I practiced everyday. I made good progress. I meaningfully tried to make biking my hobby. I wanted to make my body perform a useful skill. I found that practice riding helped me gear my body for other motor skills. Naturally I don’t feel my body well. I dearly need sensory input to feel my body’s weight. Bike riding provides lots of muscle stimulation and practicing good body awareness. Since I learned to bike, I have been able to control my body better and do things more independently. I can now pour my own milk, dress myself, keep myself from running into the street, and help out more around the house. I feel more practical now. I like that I have intelligent thoughts and now my body is starting to catch up with my mind. I mostly love bike riding because it is fun. Making bike riding a part of my life has been so wonderful.

Autistics Deserve a Chance and a Change of Beautiful Heart

By Graciela

Gentle autistics have many feelings talked about in front of them as if they are not present. This must be recognized and stopped. Understanding the autistic experience is hard. Let me try to spell it our for you. I am happy to educate.

First thing you need to know is that autism is not a cognitive disorder. It is a motor based disorder. As a result we can fully understand everything that is being said around us or in front of us. This ought to be burned into everyone’s minds that cares for us. Understanding this one rule really would make a huge difference to our personal opinion of ourselves.

The next thing that must be understood is that life is harder for autistics because they are sensitive to many things that do not effect others as much. For example I am always sensitive to food and am always trying to find a food that does not upset my sensitive stomach. Another thing that is hard for me is the kind of love that is fake. I am able to see through each person’s facade to their core underneath. Have you ever been angry at someone and argued with that person? Have you ever decided to fake the resolution in order to get out of the argument? This is kind of how I feel around people who act like they love me and really do not. This creates really forced relationships that make me stressed to the max.

I understand each and every day that feelings get hurt but autistics have a harder, tougher time moving on. Life is hard for all of us but it is harder for the autistic who feels things so deeply. Getting massively overwhelmed is not an easy thing to deal with. People need to understand that we are not weird but our bodies are under a lot of stress and are hard to control because of the motor disorder.

Beautiful people want to learn more and are ready to get educated but always these people do not insist on learning from the autistic experts and often become miseducated and all confused. Attention must be put on the autistic experience in order for amazing results to happen.

I have formed many opinions about my life and am fortunate to have access to a means of communication that allows me to express myself. I also am always putting my opinions in practice with those who try to understand and love me for who I am. Maybe you can try to love an autistic too. Strength and courage is necessary to get many feelings of rejection put away forever. With more love and support in our lives we can have beautiful memories to keep when things are rough. Learning to love is a gift from God. Put it to good use. Making all of the autistics accepted members of society will make the world a better place for all to live.

Feelings people have currently towards autistics are not acceptable because people are not understanding. Life is too short not to enjoy it. So I am doing my part to raise awareness and promote acceptance for all autistics. Keep analytics out of the discussion and just listen to your heart.

Autism and autistics are here to stay. Putting the effort into education that hones the strengths of autistics is kind of people’s missing link. With better education we can play a bigger role in the world. We are smart and amazing individuals with a lot to offer. Give us a chance to save the world from bias and judgment. 

Graciela Lotharius is an autistic 12 year-old RPMer who enjoys daring others to listen to her powerful words. She is a lively girl who likes to learn and who feels strongly about finding a way to go to a school that will somehow have the ability to dare to keep up with her mind while also embracing her hard to control body. You can find out more about her at her blog Dare To Listen.  

Spelling Gives Us A Voice

By Philip

LS writes: 

Hi Philip!

My name is LS and I'm the mother to a wonderful 3.5 year old autistic boy who is nonverbal. I have been reading through your blog for a week or so and love learning from you! 8 months ago we discovered Augmentative and alternative communication (AAC) and bought my son the app "Speak for Yourself". He is doing amazingly communicating with it! He has stunned his school staff and they have been inspired to try to incorporate the app with as many other children in his school as possible. I am so proud of him for showing that a 3 year old can use a robust communication device and shouldn't be limited to one with only a few words, as they previously assumed. He is showing the world what we already knew - that he is a very bright boy with a huge desire to share his thoughts, feelings, and sense of humor with everyone around him.

Philip, my question to you is whether you have had any introduction to high-tech AAC or whether you have friends or classmates who use these devices? My son does love letters and has a keyboard built into the app and I am sure he will love typing someday but right now he is able to use motor planning to remember where approximately 600 words are on his device and we are constantly adding more. I am new to the world of communication for nonverbal people and have been eager to see if anyone who uses RPM also uses AAC devices instead of or in addition to a letterboard or keyboard?

Thank you for your time! I hope you have a wonderful day!

Sincerely,

LS

Philip writes:

My experience with AAC began when I was 6. I started on Go-Talk. It had only a few icons. It was good for requesting but not much else. Then I got an Alt-Chat. It became my voice at school. However I was not able to communicate with it with my family. They did not know how to use it. I kind of tried but I could not express my thoughts with the pictures. I could only make requests for food. I do best with a keyboard. I am able to express myself best making use of a good vocabulary. I am most happy using letters. The words I spell are what I think. Good communication systems let you say what you really mean. The AAC programs are often geared to me making a practiced response. I have to navigate the pages to find what I am looking for. I can't always find the right picture. It makes it harder to communicate for me. At school, I use Proloquo2go. I use some icons for shortcuts like bathroom and break. I like the combination of icons and text. I am for AAC with a text option. At home I use a paper letterboard or iPad with the Assistive Express app. My app allows me to have an actual voice to what I type.

In making my thoughts known I can be free to live my life how I choose because people can understand me. I am peaceful knowing I am free to really speak my mind. I speak to save my Autistic friends from an established philosophy that is not true. Demeaning treatment of Autistic people must stop.  ABA (Applied Behavioral Analysis) treats us like animals to be trained.  The lack of understanding of autism guides the philosophy that Autistics cannot learn normally or make friends.  Autism is not lack of intelligence or empathy. It is mind-body disconnect and sensory differences. Good accommodations are what is needed. Doing the research on Autistic people who communicate should help professionals in the autism field. I think they should meet us to learn from us.  I want to teach others.

Will you listen?

 High-Tech AAC iPad

Low-Tech AAC Letterboard

(made on computer and laminated on card stock for stability)

Copyright 2015 Philip Reyes.  All rights reserved.

An Awkward Problem

By Philip

I am dealing with awkward behaviors all the time. At school I sometimes pace when I should be sitting or I shout out when I should be quiet. People think i am doing it on purpose. I am not. I get caught momentarily mightily by an impulse. My body cannot stop itself. I momentarily lose control. People can plead with me to stop. I want to listen but at times my body won't obey. Ramming against a caring mind is my body. Going near loud noise hurts me literally. I am each day daring hard to fit in.  A tame mind can ease my day. Peace comes day to day from people who accept me at home, school, and church. Popular ideas about autism say we don't care about people.  This is not true. People intimidate me because I cannot talk or act normal. Peacefulness awakens when people understand me and like me.

Pacing is an annoying habit of mine.  I annoy others by walking away and not looking at them. I seem to be rude. People think I am ignoring them. I am listening always and can't concentrate on what you are saying unless I look away. There is no way to help my body stop except by making me sit. I also need to not be made to look at you when you talk to me. 

I shout out to release tension from fear, frustration, or stress. People hate when I yell. I mightily wail that I even hurt my own ears. I have lots more annoying behaviors like smelling people or stealing people’s food and drinks.  Lucky I have mom to put up with me.

Listen openly to me. Please be patient with people like me.  No matter the behavior, we want to be included. I long to be like my brother Carlos. I want to play soccer and be cool too. My goal is to be more courteous and less annoying.

(The following is a response to the question, “What is the difference between an impulse and stim?”)

Impulse is trying to reach for peace momentarily but it is opposite in potential. Peace never comes from acting on impulse. It only brings remorse. Unlike impulses, stims are necessary for living. Stims should be tolerated at times. One day you might learn to appreciate them. Ceasing to stim bodes poorly on my thinking. Lots of thinking happens as I pace, flap, or use another movement. I think stims are healthy but impulses are not. Help me by stopping impulses but allowing stims as long as they do not hurt anyone.