Stress

This past weekend began with a trip to the AMC sensory friendly showing of the movie Muppets Most Wanted.  Throughout the movie, I had sensed Philip was not as into this movie as some of the others.  I wasn’t sure why.  I myself didn’t find it too enjoyable because they had the volume turned down too low for me to hear comfortably with all the noise around me from the people watching.  I had to strain my ears to concentrate on what was being said in the film.  Philip also kept telling me he had to go to the bathroom which annoyed me.

 

When we got home I decided to have Philip practice typing by giving me his impressions of the movie.  In the past he has written a movie review, but this time he took his writing a different direction.  I asked Philip, “What did you think of the movie?”

Philip typed out his response with my support on his forearm giving backward resistance and resetting his arm to a neutral position with each letter.  The typing was much slower than his spelling on the letterboard as he would often miss his target key one key off and self-correct his mistakes.  I did not provide any verbal cuing except an occasional comment to think about the target letter before aiming after several missed hits. (Philip’s answers in bold)  

Philip typed:  I liked it.  I thought I pleaded less to our noise to tension in the theater.  I feel peoples tension a lot.  Under the duress of the territorial pull of the theater youth who do not have right to do fc or rpm.

(Philip explained the above statement a day later on his letterboard, "I am sensitive to peoples emotions and it sometimes overwhelms me."  So you can feel the emotion of the people in the theater?  "Yes.  They have tough lives.") 

I continued the initial conversation on the letterboard, Philip's primary mode of commnication, and asked Philip, “What is your experience at the sensory friendly films?”

I feel stressed bc I am sad kids cannot communicate.  

“Which movies do you prefer to go to then, regular showings (we had seen Lego movie at a regular showing over mid-winter break) or sensory friendly?”

Regular.

I then asked Philip if he wanted to write a movie review or do a lesson.  He spelled on his board, “I want you to teach me a lesson.”  “On what?” I asked.  “About facing fears,” he spelled.  I wasn’t sure how to come up with a lesson on that topic on the fly, so I resorted to my go-to, fall-back lesson planner, Brain Pop on my iPad.  I looked up the lessons in the health section and saw there was one on Stress.  That seems the closest in category so we watched the lesson together and Philip took the quiz and got 80%.

I planned to use the lesson as a springboard for typing practice.  I thought Philip might simply type answers to reiterate what was talked about in the lesson, but again, Philip had his own ideas.

At his desk with the iPad, I asked Philip, “What is a synonym for stress?”  Philip typed: autism.

“Name me some symptoms of stress.”  Philip typed: you utter nonsense too much, intermittent petulance, intense tantrums, urination too much

As Philip began to show irritation, I asked Philip what was the matter.  He spelled, I am tired from typing.

Later on I asked Philip if he wanted to continue our discussion on stress and whether he wanted to type or use his letterboard.  “Yes” he wanted to continue and with his “letterboard.”

Philip added the following symptoms of stress:  head banging, so pitiful whining, mouth objects.  I am tense about sounds.  I am petulant to accept help.  I am leaving in so far that nothing matters except escaping fear.  I am kind of mean to people by pulling their clothes.  

“What are some things that cause you stress?”

Not talking, tons of noise, typing on iPad.  When I have to get a haricut.  To sit still is so hard (in regards to haircuts).  I might get hurt.  Each day I am tore apart by tons of nots.  (“What do you mean by that?”) I cannot do a lot of things normal kids can do.  

“What are some things you want to do that normal kids do?”

I want to learn normally.  I want to play sometimes too.  Make friends.

“What things help deal with stress or make you feel better?”

Patience.  Meeting a goal to increase independence.  I am liking (my teacher’s) exercises to address learning.  Stories about people overcoming.  Not fearing the future.  The likes on facebook.  The notes from people reading my blog.  Each day mom talking to me.  Time to veryis (various) teachings about different topics to learn about the world.

      

 Our first sensory friendly film seen (Planes) from last summer

     

       

School

Written 3/26 

by Philip

Today I liked school.  I am understanding to reassure America, I need to prove my intelligence by meeting the common core standards.  I kind of want to prove myself too.  Now to not care is preparing a person to aim low.  I am like a rifle aiming at the bulls-eye.  I am a person with a goal to go into an understanding profession.  I am interested in intelligences.  I want to pursue neuroscience.  I like studying how the brain works.  Many times understanding comes from my autism.  I enjoy understanding things.  I piece together teachings from school and life.  Each day tons of loops to tie up.  I am thinking of pieces of solving problems.

   

I think of the problem of DTTs (discrete trial teaching in ABA).  I think (my old school) gets it wrong.  They don’t teach anything.  They only use each day to reach nothing.  I used to learn to leave my mind behind.  Each day was torture.  I am liking (my new school) so much better.  It is a place where I can learn.  So long (old school).  I like not working for reinforcers.  I felt like a so-called animal.            

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