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

Speaking Out

by Philip

I am autistic and I want to dare to change ideas about us.  I am reaching out to the world by a lot of ways.  One way is through blogging.  I decided to understand autism best over all experts.  I am autistic and not seeking treatment.  I am tired of seeking ways to eradicate autism.  It each day hurts one autistic too many.  Daring to steer away from torment of talking negatively about autism is the solution.  I assume to stop irresponsible ideas about autism.  The idea that autistics are without feelings is terrible.  It leaves us vulnerable to all kinds of abuse.  I am still traumatized by teachers who would restrain me at my old school.  I so want teachers to understand they hurt autistics when they think we are not smart. 

The idea that we want to be left alone is hurtful too.  Dearth of people idea is depressing.  I very much want to make friends.  I need help with it.  I like listening to kids talk to me.  Each day I sometimes catch myself determined not to let myself get depressed about not talking.  I am determined to listen to my new teachers so I can make friends (talking with my letterboard).  

Another wrong idea is to extinguish stims.  Stims relax us from sensory overload.  I can function better if I stim.  If I couldn’t stim, I wouldn’t be able to mute the distracting sounds like the refrigerator noise or from the surroundings.  Isn’t it nonsense to think we stim for no reason? 

I am happy to be each day at (my new school).  There they treat me with respect and love.  I think autistics need more acceptance and less therapy.  I think open-ended communication techniques should be emphasized.  RPM taught me to understand myself and stop storing sorrow in me.  I am thankful to Soma and Mom for talking to me and helping me understand the world better.  I want to tell parents not to give up on their kids.  It is tragic not to have a voice.      

A Letter to You

This letter was originally written by Philip for his classmates at school, but he wants to share it with all of us.

Dear Classmates,

                My name is Philip.  I am almost eleven.  I want you to know I spell on my letterboard to communicate.  The reason is I am autistic and cannot talk.  I can like the same things today as you do.  I am very smart but my body is dumb.  My body will not listen to my brain.  I may want to say, “Hi, how are you?” but it comes out wrong.  I have some interests.  I like to watch soccer and TV.  I like to listen to music and read biographies.  I am pretty shy to play with other kids.  I am wanting you to simply understand who I am.  I have feelings like you.  I’m telling you to consider me as none other than like you.  Someday I hope to talk too.  I am understanding lonely, rightly so.  I am one to understand someone’s beliefs about me.  I look dumb, sorry, and fearful.  I hope to change your perceptions.  I am someone who has to work so hard to get by in this world.  I am kind of built for another planet.  To understand this, please do not tease me.  I kind of feel bad when you sometimes ignore me.  It sometimes makes me feel like I don’t matter.  Even if I look like I don’t like you, I do.  I might make a lot of noise because sometimes I can’t help it. I reach out to you so we can be friends.  Thank you for listening.

                                                                                       Sincerely, 
                                                                                       Philip   

Studying Autism

I have been reading Philip the book Understanding Autism through Rapid Prompting Method (RPM) by Soma Mukhopadhyay who first developed the method to help her own autistic son Tito.  In the prologue Soma writes, “Martin Luther King Jr. once dreamed of a world where his children would ‘not be judged by the color of their skin but by the content of their character.’  My dream is that individuals with autism should also be judged by the content of their character, not by their diagnostic label, nor by the unusual behaviors that often cause them to be segregated from typical society.  Our challenge is to give them the exposure of education and ability to communicate so that their character can be revealed and held up as worthy.” (p. 1)  This book, Soma’s first,  is dedicated to the “why” of RPM.  It explains the neuroscience behind autism and the adaptation process that comes about from an altered development of the brain and sensory system.  It has been quite a learning experience for both me and Philip to go through the book together.  For Philip, understanding his neurology better is helping him to understand why certain things are hard for him and how he can make adjustments to adapt better to situations that are difficult.  In the same way, understanding Philip gives me the tools to adjust my expectations and help Philip better.      

This morning, I asked Philip what he wanted to do today.  Instead of choosing an outing this time, he spelled, “I WANT TO BLOG.  I AM COUNTING ON HEARING MORE OF SOMA’S BOOK.”

In the previous chapters of Soma’s book Philip learned about the stages of cognitive development in normal versus autistic individuals, altered sensory development in autism, and adaptive behaviors in autistic individuals.  Today I read Philip chapter 6 which was in a Q&A format discussing common behaviors in autism and what might be the reason behind them.  I presented the questions from the book and Philip gave me his own insight.  We got through half of the chapter.  This is the discussion which transpired.

(Reading from book) Why is Sam staring only at the corner of the room?

I am blocking out sights from becoming too intense. I look out the side of my eyes to concentrate on detail and not get distracted.

Why couldn’t Sam bring me the book when I asked him to?

I am each day attending to so many things all at once.  I have a hard time focusing on what I am supposed to do.  I am each time trying to heed to my task at hand.  I sometimes get distracted.  

Why does Sam get upset about the window blinds being turned in a different direction?

I like attending to new things.  Each day each new interesting thing is mean to my senses.  I am anxious at first but I want to have fun too.  I am interested in a lively life.  Each day it is good to do more new things.  I am getting better at this.

If Sam has developed alternative means to adjust to the environment, what can be done to make the best use of it?

I think education is so important.  It helps me understand the normal world.  It helps me not think of my own world as much.  My own world is good for nothing.  I stim away my life there.  In Autismland you are alone all the time.  I am glad I am not there anymore.

*This entry is dedicated to Cindi and her teacher Lenae whose blog Cindi's Blog inspired us to also study from Soma's book.  Cindi is 12 and non-verbal and has been wanting to study the differences between autistic and normal minds.  She is seeking input on her blog from ALL people, neurotypical and autistic.  Philip has left his comment.  Please help her out by visiting her research page and commenting. 

 Philip, age 4, at Everglades Elementary TEACCH program in Miami