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.

Autism Revolution

I believe the tide is turning in the way we view autism and handle its challenges.  Autistic self-advocates have been leading the way for some time in promoting understanding and acceptance.  Their efforts are slowly but surely starting to catch on with parents and some professionals who have embraced notions of neurodiversity and the presumption of competence.  These parents and professionals have found a new path that is exceedingly more rewarding than the old path merely treating autism as disease and developmental delay.  They have chosen for their children alternative methods of education and communication that respect and work with their child’s unique autistic neurology.

Today Philip typed this to me:  I want to partner with my autistic friends to write a blog about autism.  It should be many voices. 

What a delight this brought my heart!  Philip can speak through his fingers.  He has friends.  He wants to work together with them.  Together with them, he wants to write about autism and teach the world what it is really like!  Haha- isn't this the real Autism Speaks!  Only a few short years ago, I did not think this could be possible!  At the time I had never met a nonverbal child who could communicate beyond simple requests.  Never in my wildest dreams could I have imagined what I know today.  Today I know the truth.  There are hundreds, perhaps thousands of people who were once thought to be severely cognitively impaired and voiceless, who can actually learn, think deeply, and now express themselves on paper, stencils, letterboards, keyboards, tablets, and computers.  The number of people is growing everyday, but many more still need to be reached.  They need dedicated parents, teachers, and supporters to teach them at their true level of understanding and help accommodate their communication as needed.  This communication is not a cure for autism, but the ability to be heard, understood, and affect one's own destiny brings serenity and alleviates some frustration.  Learning to communicate is a process that takes time and requires hard work and perseverance on the part of both the child and support network.  It can be very trying at times!  Thankfully there is an online community of families and allies who support, encourage, help, and celebrate one another in their journeys of unlocking their children’s voices.  There is good camaraderie among members and dialogue is overwhelmingly hopeful and positive.  It is a marvelous thing and nothing short of revolutionary.  

This month this blog will feature the writings of many of these Autistic children and adults who communicate through spelled or typed words.  Many have learned through well replicated techniques such as Rapid Prompting Method (RPM), Facilitated Communication (FC), or various other Augmentative and Alternative Communications systems (AAC).  A few parents even discovered their own particular technique through intuition and ingenuity.  The method does not matter as long as it works.  What matters most is empowering each person and their families through real and effective communication. This month, Autism Acceptance/ Awareness Month, we band together as a community of Autistic people, families, professionals, and allies to express ourselves in a beautiful array of voices, each with its own unique personality and experience.  The goal of this month is not simply awareness so we can tolerate one another.  The goal is acceptance, so that by each person’s inclusion and appreciation, our world is enhanced and each of our lives enriched by the diversity of thoughts and experiences working together.

MY LIFE AS A GIRL WITH AUTISM

I HAVE A VOICE AS LOUD AS A LION’S ROAR.  

IT IS DEEP DOWN IN ME LIKE A BIRD AFRAID TO LEAVE ITS NEST FOR THE FIRST TIME.  

NEITHER TIME OR LUCK WILL WAKE THIS SLEEPING DRAGON, 

BUT MY KNIGHT IN SHINING ARMOR HAS ARRIVED TO RESCUE THIS PRINCESS IN DISTRESS.  

RPM HAS AWAKENED MY VOICE LIKE SLEEPING BEAUTY WAKING FROM HER SLUMBER.  ALL MY WORDS LEAVE MY BRAIN LIKE A WATERFALL FLOWING INTO MY FINGER ONTO THE THICK BLACK STENCIL BOARDS.  

SUDDENLY MY HEART FEELS LIKE A LITTLE KID ON CHRISTMAS.  

MY VOICE IS AS IMPORTANT AS A MEANINGFUL POP SONG THE WORLD FALLS IN LOVE WITH.

THIS IS ME AND THESE ARE MY WORDS LOUDER AND MORE FEROCIOUS THAN EVER.

BY

TIFFANY JOY BROSKOSKIE

Age 13

Kenilworth, NJ

(RPM for 1 year)

Mom Debbie and Tiffany

Reading and Spelling

Philip has been learning and communicating through the Rapid Prompting Method (RPM) since  October 2012, but the groundwork for his ability to read and spell was laid years before, without anyone but Philip knowing it.

When you see a non-speaking person spelling out his or her thoughts on a letterboard or keyboard, at first it seems a very incongruent sight.  Many of us harbor a preconceived notion that a person who does not speak does not think either.  It is this prejudice that made the term "dumb" synonymous with mute or non-speaking.  It is logical for people to ask, after they witness my son spelling, "How did he learn to read and spell?"

Philip tells me on his letterboard he was 3 or 4 when he learned to read.  When we started to get worried about Philip not speaking, Philip's Lola (Grandmother) bought him a sturdy set of cardboard flash cards with pictures of words from A-Z with the corresponding text of the word.  (As a side note, Philip's ABA flash cards only had pictures without the text.  He did not play with those.). Philip loved his cardboard flash cards and would carry them wherever he went.  He would spend much of his free time lining them up in a beautiful fan formation.  Taking my cue from Philip's love for his flash cards, I made homemade flash cards with each family member, close friend, and teachers' pictures on them with their name printed below.  Philip wrote about his flash cards saying, "I used to line up my flash cards.  To people it was understood as a stim.  I was teaching myself to read.  I played with words in my head.  I very much like reading."

Philip was taught in the ABA way for many years.  He says at first he enjoyed it, but in time he grew bored and resented the repetition and his inability to demonstrate progress in his drills and in his ability to communicate.  He wrote, "At home I studied a lot.  My mom did each lesson (ABA drills from school) too, so much I got mad at learning.  I meant to learn new things, but all I got was hearing the same stories over and over.  I did learn how to read though.  Read Love You Forever and If You Give a Mouse a Cookie.  I learned to role (play) like my mom telling the story.  I would practice reading in my head.  I smiled I could understand words on paper.  Each day I played with those words in my head.  I would see words in my head and arrange them in stories and meanings."

Philip also learned to read from church.  He wrote, "At my church they played videos of worship songs.  I used to match the words on the screen with the words sang.  I learned to read."

Other ways Philip learned to read were from street signs and words on TV.

Today I asked Philip how he learned to spell.  Here is his answer:
"I learned to spell from Soma.  She showed me how to write on the stencils the words I already knew how to read.  I love Soma because she showed me how to communicate.  To decide to write not only saved me from silence, it gave me a purpose: is to teach each autistic how to speak for themselves and to sometimes speak for those who cannot."

 

                      Philip and his flash cards at age 3