Open Communication

Holly writes:

I would love to know how easy or difficult it was for you to begin open communication after mastering pointing to letters or typing. Thanks!

To Holly,

Open communication was a hard-won victory for me. I longed to communicate openly all my life. I found it impossible until I learned RPM. I am going to tell you why open communication is hard. Talking takes all the energy I have. Day to day I use language in my inner thoughts. I hear my own voice. It sounds perfect in my own mind. Getting my thoughts out is lots of hard work. My mouth won’t say my thoughts. I badly want to talk but I lack what it takes to translate thoughts to speech.

I had to learn to spell my thoughts. Spelling is easier because I can point better than I can speak. But it was hard to learn. I had to learn how to control my body to stay focused through onslaughts of other competing thoughts and every sensation. I learned to spell on a stencil and how to think more thoughtfully so I could peacefully make opinions and describe my feelings. At first I learned to spell answers to facts about subjects. Then I learned to use my reasoning to solve problems. Back when I was learning I had a hard time not being distracted. Stims and impulses fought with my brain to get my body to disobey. I needed my mom’s presence and prompting if my brain were to win. I tested my brain to make my body stronger at following commands.   I made myself listen to my mom to keep myself focused.

Going from an academic subject to open-ended communication was like learning to ride a two-wheel bike. I needed support from the training wheels to learn the motion of riding the bike. Then I needed confidence to know I could do it. When I first rode a two-wheeler I was completely shocked. I was not sure I could ever do it but once I did it, it seemed so natural. That is how open communication happened for me.

Open communication is different from all other responses. Recalling facts is easiest. It only takes retrieving them from their storage. Reasoning takes letting a few thoughts out of storage and joins them together. Open-ended communication involves being able to extract a thought from an ocean of tangled thoughts. Some thoughts are silly. Some are annoying. Some are sad. The thought that wants to be told must untangle itself slowly and with gentleness. I make my thoughts come out by typing letter by letter because I must slow down to get my words out. I am patient because being quick leads to impulsive answers I don’t mean to make. I think I will talk someday but I have to be patient.  

Open communication is what allows me to be free in my soul. I can be understood. I can now let people into my life. I can exchange ideas with them.  I can advocate for myself. I can make goals for myself.  I can teach. Open communication lets me be free to live.

Philip

Talking with fellow blogger friend Rhema

Copyright 2017 Philip Reyes.  All rights reserved.

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.

I Know Why the Caged Bird Sings

Today, May 28, 2014, Maya Angelou died.  She was a true renaissance woman in our day.  She described herself as a poet, a lover of the “music of language.”  As I learned more about her, I thought Philip would really admire and appreciate this woman. 

After school, I told Philip about Maya Angelou.  We did a Brain Pop lesson on her life.  Then we read one of her most famous poems.

I Know Why the Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

Lisa (Me):  What did you think of this poem?

Philip:  I liked it.  I think it is carefree that the one bird is free to fly and sow its seed somewhere it pleases.  I think the other bird is trapped by the host’s cage.  No God so needs us to enslave one another. 

 

L:  Do you think the poem is about people?

P: Y (for yes)

L:  Who is the free bird?

P:  Someone who gets to live his dreams.

L:  Who is the caged bird?

P:  I think the caged bird is the author Maya Angelou.

L:  What is the cage?

P:  The cage represents oppression by society.

L:  Can you relate to this poem?

P:  I feel like the caged bird.  I kind of feel oppressed by further longing to vear (veer) to some normalcy.  I really want to mean to make a life for myself but I cannot bc (because) I feel limited by being autistic.  I really interested in teaching about the direction autistic research should be going.  Research should go towards teaching communication, not meaningless drills.

L:  What is the cage in your case?

P:  Meaninglessness.  I think bc of misunderstandings of not speaking, autistics are many times sentenced to meaningless lives.  They restlessly mean to free themselves from the torment of silence.  It sometimes makes me so keen to reach out to shake up schools which stand in the way of progress.

L:  Why does the caged bird sing?

P:  He sings for freedom.  Songs for freedom are sang realizing the past was really tormented but there is meaning to our struggles and hope for tomorrow.

L:  What are the things longed for?

P:  Inner peace, to not be mended for autism, education like a normal kid, really good learning how to communicate.

 

For Autism Acceptance Month

By Philip

I am telling you the truth about autism this month for a change. I used to accept I was belittled by society because I could not speak. Teaching me communication changed that. Now I speak loudly for change. We autistics are smart. Not listening to us is kiss of death. I am hoping for a world where all autistics can be given their voices. Today one thing you can do is to accept us as smart and believe we have something talkers can learn from. 

Inspiration from Nelson Mandela

Nelson Mandela died yesterday, Dec. 5, 2013.  A man whose name became synonymous for peace and freedom, Mandela embodied a man we should all aspire to be like.  Today I taught Philip about apartheid and Nelson Mandela’s role in ending the system of forced segregation and reconciling South Africa as the nation’s first black president.  

After our lesson I asked Philip to name three facts about Nelson Mandela.  He responded on his letterboard: 1) He was imprisoned for starting a movement against apartheid, 2) He was a president, 3) He raised awareness about AIDS.

Philip wrote this tribute:  “Nelson Mandela I admire you for your courage. You gave people freedom from apartheid.  Please be remembered always.”

At bedtime, Philip spelled he was thankful for Nelson Mandela.

After I finished putting Philip to bed, I decided to continue to learn about Mandela.  I came across some of his most inspirational quotes.  Many of them bolster the hopes I have for Philip.  I will share them with him so that he may be encouraged too.

1)      “It always seems impossible until it’s done.” 

This is so true.  I cannot imagine how Mandela must have felt being in prison for a life sentence, 27 years served.  There must have been moments when he thought all hope was lost for his life and for the equality of those he went to prison advocating for.  What I have learned this past year in my own life is that I must never give up on a dream.  There was a time when I nearly stopped believing a decent life would be possible for Philip.  I am so glad I never completely gave up!  I can check off communication as an “impossible” goal that has been reached.  I now have other things on a list that still seems like a monumental climb, but I believe can be achieved: attending mainstream school, making a close friend, finding a hobby, earning a living.

2)       “Education is the most powerful weapon which you can use to change the world.”

      When Philip and I did our lessons on slavery, it was a theme that slaves were not allowed an education and were punished if they were discovered engaging in such a subversive activity as learning to read.  Those who did become educated, such as Frederick Douglass, were not only able to change their own lives, but also affect a change in society.  In the same way, Philip’s education will be a cornerstone for changing his life for the better.  His education has the potential to open the doors for others who cannot speak to communicate but are intelligent and misunderstood.  The current accepted system of education for non-speaking autistics is insufficient and needs to change.  Philip is among a growing group of non-speaking autistics like Tito, Ido, Naoki, Carly, and many others who are communicating effectively in alternative ways and proving to others they can learn just as any other person their age.

There are so many other pearls of wisdom from Mandela that need no explanation, but resonate so deeply in our experiences. 

3)      “For to be free is not merely to cast off one’s chains, but to live in a way that respects and enhances the freedom of others.”

4)      “Do not judge me by my successes, judge me by how many times I fell down and got back up again.”

5)      “There is no passion to be found playing small – in settling for a life that is less than the one you are capable of living.”

6)      “Money won’t create success, the freedom to make it will.”

7)      “We must use time wisely and forever realize that the time is always ripe to do right.”

8)      “A fundamental concern for others in our individual and community lives would go a long way in making the world the better place we so passionately dreamt of.”

9)      “Resentment is like drinking poison and then hoping it will kill your enemies.”

10)   “I like friends who have independent minds because they tend to make you see problems from all angles.”

11)   “A good head and a good heart are always a formidable combination.”

12)   “When people are determined they can overcome anything.”

RIP Nelson Mandela.  Thank you for leaving us all a lasting legacy.