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.

World Autism Awareness Day 2015

By Philip

I want people to know autism is another way of being. I am weary of stereotypes that make us out to be less human than neurotypicals. I have listened to people talk negatively about autism since I was diagnosed. I learned to hate myself and think I was a monster for causing so much hardship. I can't let others continue living under popular ideas about autism. Let’s pretend you are like me. You can't talk; but having a thinking mind, you can understand. Imagine you are each day answering back what you mean to say. But only you can hear it. People hear your voice saying things you don't necessarily mean. They think that’s all you are capable of thinking.  People see you stimming by your repetitive flapping or tapping. They think there is no purpose. They don't understand the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for me to keep up with, and people trying to engage me. It is hard on me to put my stims away but I try. People see your hyper movement. They prefer you to sit quietly. It’s hard to feel my body in space. I prefer to move because I can feel my body better and peacefully work. I work better sitting than I used to. The reason is now I get interesting lessons.

Interesting subjects like math, science, social studies, and language arts really stimulate my thinking, ease my mind, and teach me something about the world. I was not always taught in the way I am now. Many years of my life were spent in ABA school. I was made to do my drills over and over until I was so bored and frustrated with my teachers. I would melt down. I am telling you ABA is not the solution. ABA is long hours meeting pointless goals like pointing to flashcards and pointing to my nose. If pointless goals are your passion, then I pity your kids. People need to be able to set their own goals. No person should be without a voice. I believe in teaching communication first. Meaningful communication means being able to say what I really want to say. People must believe we are capable and our minds are intact.

Most importantly, my parents have been great. Love is felt when you are accepted. Love is felt peacefully when you are no longer seen by your momentary deficits but by your attributes that make you a complete person.

I peacefully make friends now. I learn normally. My school values me. I make my own goals. My parents support me by communicating to others about autism and me. They play. They make my life as normal as possible.

I think autism is no better or worse than a typical life. Each life is special in its own way. I love my life as autistic. 

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.

My Movement

By Philip

I am wanting a chance to explain my movement as a result of my autism and partial apraxia.  I understand I am quite an annoyance at times.  People have a hard time being patient when I run away or seem like I was ignoring them.  I am always listening even when moving.  I can be trying to sit and work.  I am trying to do my best.  People have a task for me but I can't make myself sit to do it without getting up from my seat a lot. I am trying to control my impulses to run from a difficulty.  Difficult things are concentrating hard to each day meet people's expectations and not easily being able to.  I tear apart being unable to succeed so I flee.  I really need to be understood to feel more comfortable and at ease.  Then I am more able to stay still.  It also helps when I am used to a situation.  I can calm myself.  I am more able to do this now that I can communicate. 

I also have difficulty feeling my body in space.  I move to try to not feel like disappearing.  Perhaps I reach for objects to tap to dot my place in my environment.  I piece together lots of stimuli to find my place in space.  I am kind of like an alien built for a different planet.  I am instead trying to make this world my home by adapting as much as I can to the rest of mankind.

Flapping

By Philip

I love to flap my hands.  No one goes through the trouble I have to feel my body.  Dare to feel each moment floating in space.  I carry least weight and each day I go crazy not knowing how my body will act sometimes without my mind's control.  Most people have portly muscle mass to feel their own weight.  I do not.  I like to flap, daring to fly like a bird off a tree.  I flap to mean to fly away to freedom from my body.  Each day instead of carrying weight, I carry air.  It is damning.  It is hard to live so meaningfully.  I cannot do anything most people take for granted like I cannot talk, lip read (when asked to explain, wrote- I cannot make eye contact when people talk to me), I cannot each day very well act normal.  I need to flap so I can feel my placement in space.  If I don't, I place myself in hell.  I have killer fears of feeling weightless.  I feel like I might disappear.  I lie in peace momentarily when I am dealing with pillows of cotton.  I love blankets for this reason too.  I am insensitive to recreational behaviors like learning sports bc I cannot play like everyone else.  I dearly need to exercise.  I barely have strength in my muscles.  I even have no meaningful movement except my finger.  Each day I dearly need a sensory diet.  I have a goal of easing my ability to annoy others.  I am not trying to annoy others but it happens all day long.

FC- Full Circle

Philip and I have just come home from a 3-day introductory workshop on Facilitated Communication (FC) at the University of Syracuse Institute of Communication and Inclusion.  In some ways I feel like I have come full circle in my search to help Philip in his autism.  We began in Miami in 2005.  I remember reading a book with a checklist of therapies rated A to D by someone whose word I accepted as truth.  At the top was ABA which we got involved in right away.  It was indeed very effective in the early years, but leveled off in potency about the time Philip turned 4.  Regardless, we slugged away at it for 6 more years based on it’s A rated reputation.  We didn’t know until just recently how Philip felt about it when he was past preschool age, how he was made to check his mind at the door to repeat senseless drills year after year and how he was made to feel like a wild animal trained with edible reinforcers.  Throughout the years we went down the list from A to C.  We tried the DAN Dr. protocol, speech, OT, Floortime, RDI, listening therapy, and sensory integration.  All provided a little help, but none provided what we really longed for –communication.  I wanted so badly to know how Philip felt and what he thought.  What I would do to spend just one day in his head, I would ponder.

There was the one therapy on the list I thought we would never try.  It had the worst rating of all, D-.  It was facilitated communication.  It was described as dangerous, controversial, and manipulative.  I wanted no part in it.

As the years went by, and therapy after therapy came and went each contributing a little gain here and there, reality seemed to sink in that we would never know Philip the way we did our other children.  When Philip was 9, I learned of a therapy that was not even on that checklist I read in 2005.  It was Rapid Prompting Method (RPM).  This blog has been dedicated to the amazing journey RPM has given us by finally unlocking the door to communication and allowing us to hear Philip’s real voice for the first time.  It has also opened the world to Philip so that he could participate in the things we so take for granted- education, friendship, and a self-directed purposeful life.  

Philip has been communicating with his letterboard effectively for a year and a half now.  His words have gone from single words to pages.  But we weren’t finished yet.  FC was still left unchecked.  I started to become more curious about it.  The movie Wretches and Jabberers and the book The Reason I Jump featured non-speaking autistic typers who practiced FC.  Anyone watching the movie could tell each person was writing their own words and were not puppets of their facilitators.  I could not help but be deeply moved and inspired by them.  These men and women spoke of deep longings, loneliness, being underestimated, and being misunderstood.  They also showed the bonds of friendship they made with each other, their facilitators, and their families.  Then I met other parents on the internet through our close knit community of alternative-thinking autism parents.  Christine’s blog  Day Sixtyseven caught my attention because her son Oliver, who is about Philip’s age, was also just emerging in his communication skills at the same time.  He uses FC to communicate and has become completely independent of physical support. 

So off we went to Syracuse to learn FC with my mother in tow.  Ironically, now that I live in Buffalo, I am literally just over 2 hours away from THE center of FC training in America.  The training brought people from all over the country and as far away as Guatemala to learn.  On day 1, Philip had his individual evaluation by Harvey Lavoy and a trainee and speech therapist named Lisa.  As I entered the room, I couldn’t help but be star struck to meet Harvey, who is Tracy Thresher’s facilitator, both featured in Wretches and Jabberers.  During the evaluation Philip was invited to type on an ipad with Harvey facilitating.  They knew he was already a communicator and didn’t need to start from the basics.  Philip typed, “I’m hoping to type to mom about my intelligence.  Teaching you is my job.”  This didn’t all come out at once.  Philip would intermittently become upset and Harvey gave him sensory input to calm him such as letting him bounce on a yoga ball or spinning him in a chair.  He waited patiently until Philip was ready to type more.  During the evaluation Tracy even came in and typed Philip a very encouraging message telling him a little about how he was at Philip’s age and how he knows how hard it is but that he can do it.  

At the end of the evaluation, Philip communicated on his letterboard.  He spelled to Harvey and Lisa, “I am happy to learn from you.”  They were very impressed with Philip.  Harvey explained to us that FC would not take away from any of Philip’s current methods of communication.  It would enhance his total arsenal of communication.  FC teaches the skill of supported typing.  The support is actually a backwards resistance provided as a person aims for a letter on the keyboard and then a resetting of the arm to a neutral position to begin the process again.  The rhythm created by the motion also helps in the process of regulating the person.  Support is needed to help the person with movement disorders, such as autism and cerebral palsy, overcome errors made by impulsivity, tremor, and inability to locate their bodies in space.  The goal is always fading support until independence is achieved.  Harvey explained typing would benefit Philip because now that he is producing longer strands of communication, it is more important to be able to add the appropriate spaces and punctuation and to self-correct his mistakes.  With the letterboard, a lot of the responsibility still falls to me to make sure I transmit Philip’s message as accurately as possible.  Though I am careful to make sure I get Philip’s message across correctly by asking him questions like “did you mean to say that?”  I can see Harvey’s point that typing onto a computer or iPad will really streamline the process and give Philip more responsibility for his work.

Later that evening I asked Philip his impressions of his day and the evaluation.  Philip has given me permission to share.  This was spelled on his letterboard:

I am excited about today.  Today I learned FC.  I arrived in Syracuse on a cold day.  I went to the hotel.  I roped an open teacher.  (Please explain, I asked) Teacher was leader in keeping open mind to me.  I learned to make my sometimes airant (errant) body obey me by searching resistance to my impulses.  Each day I kind of want to practice.  Daring to leave my letterboard behind is hard but I am willing to understand it helps me get more independent.  I am teachable.  I am sometimes hard to teach bc so into stims or I am tired from not eating or I am so eloping bc I promise I am reaching out to dare to respond but am really resistant in my body.  I was grabbing Harvey bc I was really stopping the impulse to kind of wash away learning down the drain.  I am tired all the time of spelling my thoughts.  It takes so much concentration.  Each day I am stopping myself from stimming.  I stop myself from being too leading. (What do you mean, I asked).  I am one to get my way by tantrumming.  I each day so much try to accept my autism.  It is so hard to live with.  No matter what I do it is always real hard.  Tracy is really seeing me as smart.  I liked his letter to me.  He is timely in getting to me his two cents.  Is team tired of me?  I want to learn more tomorrow.  Someday need to see people again.  One day no one should need to write to talk.  I like to write but it is hard.  One day I hope to talk.  The end.                    

The next couple of days I learned more about FC, its history, and how to use the technique through guided simulations.  I also met a lot of wonderful educators, parents, and professionals who were some of the most respectful and passionate people you could meet.  The best part was seeing autistic people themselves talking to us on their devices.  One man Jamie, even typed independently with two hands and could speak back what he had written as he fielded questions from the audience.  He and Jen, a non-speaking typer, both graduated from Syracuse University and lead productive lives.

What a journey it has been to come full circle like this.  My 2005 checklist is all checked off.  Who would have known back then that a D- therapy and one that had not even made the list would prove to be the best of all?  Who would have known my wish to know Philip would come true only then?  I left the FC conference, like I did the first time I met Soma- full of hope and anticipation.           

 Lisa, Philip, and Harvey

 Me and Tracy

 Tracy and Philip

The Difficulty of Self-Control

A month ago I asked Philip, “What is the essential feature of your autism?”  Philip replied by spelling on his board, “I CANNOT MAKE MY BODY OBEY MY BRAIN.”  This sentiment has been repeated over and over by autistic people, especially by those who are non-speaking but have found a way to communicate alternatively by spelling on a letterboard or typing.  Yesterday Ariane Zurcher, mother and author of Emma’s Hope Book, wrote a terrific post entitled “When the Body Does not Obey the Mind” (click here to read the entire post).  The post quotes several young people about their experiences living in a body that does not listen to its mind.

I read the post to Philip this afternoon.  I wanted him to know there are many others like him and that he is not alone.  Then I asked if he wanted to share his experiences.  “Y,” he pointed.

I am in a body that does not obey my brain.  I am open minded but my actions are each day searching the peace of mind.  Tons of each day I am so tired from making my body obey my brain.  I am always estimating to overcome an impulse.  Impulses come in many different forms.  I may see food and out of the blue it makes me wholly tuned into it.  I am really too slow in my thinking to stop myself from taking the food.  I feel bad after.  I think I really need to readdress understanding real need to control my body.  I am most in control when I take some words and try to get me to follow it.  I understand a lot of verses from the Bible.  They help me touch mountains of depression and tossed wind of seeking out help.  (“What do you mean by tossed wind?” I inquired).  It means help is like tossed wind because it is hard to grasp.  The adamant art of each day is addressing my self-control by praying to God.  Each day I am eager to accept myself more.  I’m each day seeking others to friend me to let me be myself and not let me accept loneliness.  One day I want to dare myself to be friends with normal kids.    

Each day I am totally stressed about teaching myself to stop impulses.  Impulse to tear teachers apart is the worst.  I get that impulse when I am tired.  Tiredness each day to eat neatly in the cafeteria.  I am tired from noise.  Tired from accepting hard teaching.  I need rest and a break when I get in a meltdown.  I am letting God help me more.  I pray to Him when I am getting tired.  He answers me with a teaching.  It is an understanding of a token verse.  

I had the impulse to tear at Dad because I was tired from trying to type on the iPad.  In a rage I do not know how to stop.  One thing to keep in mind each day is to leave me alone when my body is lashing out so I can pattern my solace to keep calm.  (“What do you mean by ‘pattern my solace’?” I asked).  Ask on bended knee for God’s help. 

I am tired from each day telling myself to stop stims.  It is too onerous to analyze right behavior.  It is hard to coordinate all the things I need to do.  I need to listen.  Then I need to plan my action.  I am tons of work to move appropriately.  I need help to stay on task.  Tired and stressed all the time.  Someone makes leaps to have to reach me.  To better help me one should keep topping me.  (“Can you clarify?”)  They should interest me doing new things.  They should accept no excuses from me, except if I am sensory overloaded.