Sunday, August 24, 2014

Philip's Baptism Testimony

By Philip

I came to know Jesus as my Lord and Savior when I went to church in Miami. In Miami I understood God so much from the songs we sang.  I used to love jumping to the songs they played in church.  I loved to sing in my head praises to God.  I could praise Him all day.  No one knew I am talking to God all the time. I knew Jesus when an angel appeared to me in a dream.  The angel was pure white and looked real peaceful. He said I would be kept silent but I would have a voice to you to soon sing of God's glory.  Each day I waited on God to touch my voice.  I estimated He really loved me but He was so really tough to please.  Understand I was really reading the Gospel from songs from church.  I wanted to believe in a savior but I was tongue tied.  I became toughened no one would save me from my silent prison.  But the word of the angel never left me.  I decided mom could not save me but Jesus can.  Then when I was 9 I met Soma.  She was the first person to believe in me.  She tried to help me show everyone I am smart.  She gave me a voice.  Because of Soma I am able to give my testimony to you.  I am trying now to give glory to Jesus for saving me from silence and despair.  Today I believe in Jesus being my savior because He died for my sins, and rose from the dead to give me a new life.  I now have a purpose to go tell the Gospel of Jesus Christ.  To the Son of God Jesus Christ I owe my life.  

(Why do you want to be baptized?)
I want to be baptized because Jesus saved me. I am so happy God chose me. 





Wednesday, August 20, 2014

Typing

By Philip

I want to type well because it is utilised in many situations.  The real world uses the typed word all the time, for we come to communicate by texts, Facebook, and emails.  I am now a part of the digital age. 

The reality is I was special to learn to type.  Mom really pushed me to practice really hard everyday. Typing is very hard.  I need to concentrate so hard placing my finger on the right keys.  I undermine typing every time I tense up.  Tension comes from going to stoop your self down to destructive stims. My title undermining stims are having to move my body and really hurling myself on the ground.  Not remembering the reason I wanted to pour my total emotions out is frustrating.  I truly irritate myself when I really lose control of myself.  I have such a hard time focusing on what I want to say.  I need someone to keep me focused to get the right word out and initiate my movement in purposeful ways. To type my real thinking I need a trusted person to encourage me through the reaching out of my words.  I think I am improving everyday with practice. 

Typing is having a voice with your really good friends writing letters and texts.  Typing is connecting with the world. Typing is touching interested people understanding autism.  Typing is God's gift to me.



Tuesday, August 12, 2014

The Body and Brain Disconnect by Elizabeth Vosseller

When I began blogging about Philip's progress with communication about a year ago, my purpose was to document Philip's words, which were more precious than gold to me, and to remember the lessons I was personally learning through Philip's awakening to communication to the outside world.  Particularly, I was learning so much about the trio gifts most highly esteemed in the Bible, and I would say in most people's lives- that of faith, hope, and (the greatest of all) love.

At that time, I never would have envisioned the impact we would make in telling our story.  It has been an amazing year.  Not only have Philip and I grown in maturity and skill, we have had the wonderful privilege of helping others.  These have included parents, grandparents, teachers, professionals in speech and occupational therapy, and most importantly, other kids like Philip.

Today I am reblogging a post from my friend Elizabeth Vosseller, a speech and language pathologist in Virginia.  We correspond on Facebook and email.  She has been doing great work with her students using RPM and her blog is an amazing resource of lesson plans and testimonies from her many students who are thriving in communicating despite not having speech.  Her blog and original post (reposted with her permission of course) can be found at http://growingkidstherapy.wordpress.com/2014/08/12/the-body-and-brain-disconnect/#comments.  Elizabeth- Thanks for your friendship, generosity, encouragement, and heart of gold!
-Lisa

The Body and Brain Disconnect

I am part of a wonderful community of parents and practitioners of RPM. We chat, compare notes, commiserate, laugh, motivate, and learn from each other. Most of us have never met face to face (yet!). We have come together via the internet to blog, Facebook (is this now a verb?), skype, and email not only to learn but to share the words of individuals using RPM and encourage others to try this empowering method of education and communication. One of my favorite blogging duos is Lisa Reyes and her son, Philip, who write Faith, Hope and Love…With Autism. It has been a pleasure to get to know Lisa through her blog and our correspondence. Lisa is a great example of a parent who has worked patiently and persistently to support her son’s journey in RPM while guiding other parents! I could fill pages with the names, stories and leadership of other remarkable parents (and I will!). That’s the beauty of this community – parents and providers are just as dedicated to the success of others as they are to the success of their own children or clients.

Several months ago, I read Philip and Lisa’s blog entry, “The Difficulty of Self-Control“. Philip described his struggles with control of his body and the disconnect between his body and brain so eloquently. Through his words, I gleaned a better understanding of my kids who have similar struggles. So, I wrote a lesson featuring Philip’s blog! This has been one of my favorite lessons and as you will see, I have used it many times with clients of varying ages. (These responses are from clients ages 8-23. I do find it is best used with individuals who are consistently responding at the sentence level, but I have used it with kids who are at the multi word level too.) *To access this entire lesson (and please try it out with your own child!) see the comments section of this post. Here are the responses from my panel of experts!
disconnected2
“MY BODY HAS A MIND OF ITS OWN WHICH IS VERY DIFFERENT THAN MY OWN. “

Can you relate to Philip’s statement that his body does not obey his brain?
I GET OVERWHELMED WITH TRYING TO CONTROL MY BODY.  I HAVE TO WORK SO HARD TO GET THROUGH MY DAY.  I AM JUST TRYING TO LIMIT MY MOVEMENTS SO I CAN FUNCTION AT ALL.  ~Luke (8)

I CAN SO RELATE TO PHILIP.  I CANNOT CONTROL MY MOVEMENTS BECAUSE MY BODY FUNCTIONS SEPARATELY FROM MY BRAIN.  TOTALLY SEPARATE.  MY BODY TAKES OVER AND I AM LEFT OUT OF THE DECISIONS.  IT IS NOT PRETTY TO BE LIKE THIS.  I DO NOT LIKE THE THINGS THAT MY BODY MAKES ME DO. Can you give me an example?  GOING CRAZY WITH NOISES AND MOVEMENTS.   ~Paul (23)

MY BODY DOES NOT OBEY MY BRAIN EITHER.  I DON’T KNOW WHY MY BODY WON’T LISTEN TO MY BRAIN.  YOU CAN NEVER KNOW HOW FRUSTRATING IT IS TO LACK CONTROL OF YOUR BODY.  ~Huan (17)

YES.  MY BODY AND BRAIN ARE DISCONNECTED.  JUST LIKE PICKING MY FINGERS. THESE URGES COME OVER ME AND I HAVE TO DO IT.  ~Ian (16)

I DO NOT HAVE CONTROL OF MY BODY.  IT DOES NOT LISTEN TO ME.  MY BODY DOES WHAT IT WANTS.  ONLY MY BODY KNOWS WHAT IT IS GOING TO DO.  Can you give me and example?  SOMETIMES IT IS NAUGHTY WHEN I TELL IT NOT TO BE. OTHER TIMES I AM SURPRISED BY WHAT IT DOES.  ~Emma (17)

SO VERY MUCH.  I CANNOT CONTROL MY BODY.  MY BRAIN AND BODY ARE DISCONNECTED.  SO I USE MY BRAIN TO THINK.  VERY OFTEN MY BODY BETRAYS ME.  IT WONT LISTEN TO MY BRAIN.  MY BODY HAS A MIND OF ITS OWN WHICH IS VERY DIFFERENT THAN MY OWN.  ~Ben (18)

Philip talks about his impulses.  What is your experience with impulses? 

I CANNOT STOP MYSELF WHEN I START TO DO SOMETHING.  I FEEL BAD AFTER BUT I CAN’T HELP IT. ~Luke

I HAVE IMPULSES ALL THE TIME.  MY BODY IS ALWAYS GETTING ME IN TROUBLE.  IT IS UNCONTROLLABLE AND I HAVE SPENT MY ENTIRE LIFE FIGHTING FOR CONTROL. IT HAS BEEN A CONSTANT BATTLE.  ~Paul

MY BODY TAKES OVER MY BRAIN AND I AM LEFT OUT IN THE COLD. WHEN THIS HAPPENS  I AM TOTALLY SURPRISED.  IT IS LIKE A STRANGER HAS TAKEN OVER MY BODY.  ~Huan

I AM ALWAYS MEETING CHALLENGES FROM IMPULSES.  MY BODY IS OUT OF CONTROL. OFTEN MY BODY REVOLTS AND TAKES OVER AND KICKS MY BRAIN OUT. FIRST I NOTICE SOMETHING.  MY BRAIN REGISTERS SOMETHING AND I KNOW WHAT TO DO BUT MY BODY DOES NOT LISTEN TO MY BRAIN.  I CAN NOT EVEN TELL YOU HOW FRUSTRATING IT IS.  MY BODY NEEDS TO GO IN TIME OUT.  SOMETIMES I GET SO ANGRY WITH MY BODY.  OTHER TIMES I THINK I AM REALLY MAKING PROGRESS. ~Ian
IMPULSES HAPPEN ALL THE TIME.  I SEE SOMETHING AND I CANNOT HELP HOW MY BODY RESPONDS TO IT.  Can you give me an example?  WHEN I SEE THE COMPUTER I GET OBSESSED WITH THE NEED TO GO ON IT.  ~Emma

USUALLY IMPULSES FOR ME HAVE TO WITH MY NEED TO STRAIGHTEN UP ALL THINGS OUT OF PLACE.  I TRY NOT TO BUT MY BODY TAKES OVER.  USUALLY I LOSE THAT BATTLE SO I HAVE QUIT THAT WRESTLING MATCH.  ~Ben

Philip talks about being tired.  What makes you tired?  

I AM TIRED OF FIGHTING MY BODY ALL OF THE TIME.  IT IS A NEVER ENDING JOB FOR ME. I AM SO WIPED OUT PUTTING UP WITH MYSELF AND MY CRAZY BODY.  I WISH I COULD STOP FIGHTING ~Luke

I AM TIRED OF CONSTANT STRUGGLE WITH MY BODY.  I DON’T WANT TO CONTINUALLY STRUGGLE WITH MY BODY.  I DON’T WANT TO CONTINUALLY HAVE TO WORK HARD JUST TO GET THROUGH THE DAY.  BUT I HAVE NO OTHER CHOICE. I ACCEPTED THIS LONG AGO.  ~Paul

JUST GETTING THROUGH MY DAY IS EXHAUSTING.  TRYING TO CONTROL MY ACTIONS EACH TIME MY BODY TAKES OVER WIPES ME OUT.  THIS HAPPENS ALL DAY LONG.  I NEED A VACATION FROM MY BODY.  YOU LAUGH, BUT IT IS TRUE. ~Huan

TRYING TO EDIT MY BODY’S ACTIONS NEVER STOPS.  IT SUCKS THE LIFE OUT.  THE BODY IS THE ENEMY.  I WISH FOR REST PARTICULARLY AT NIGHT WHEN I WANT TO SLEEP.  THE CONTRARY BODY WONT LET ME.  ~Ian

I AM TIRED OF MY BODY BEING NAUGHTY.  IT NEEDS TO LEARN TO LISTEN TO MY BRAIN AND BEHAVE LIKE A TEENAGER.  I AM SO TIRED OF MY BODY GETTING ME IN TROUBLE.  ~Emma

I AM TIRED OF FIGHTING THIS DISOBEDIENT BODY.  EACH DAY IS AN EPIC BATTLE BETWEEN MY BRAIN AND BODY.  I AM EXHAUSTED BUT REFUSE TO SURRENDER THE WAR. ~Ben

Philip mentions trying to control stims, what can you tell me about stims?  (Note: my lessons have a way of evolving over time.  I have added these last two questions over the months that I have used this lesson.)

STIMS HELP ME TO FOCUS. DO NOT THINK THAT WHEN I AM STIMMING THAT I HAVE STOPPED LISTENING. I AM STILL WITH YOU BUT MY BODY HAS CHECKED OUT. ~Luke
STIMS ARE A REST FROM MYSELF.  THEY LIGHTEN UP MY BURDENS BY LETTING ME ESCAPE.  STIMS ARE LIKE NOTHING I CAN DESCRIBE.  I BET IT IS LIKE BEING ON DRUGS.  STOPPING MY STIMS IS VERY DIFFICULT FOR ME.  I KNOW I CAN’T STIM ALL THE TIME BECAUSE I WOULD NOT GET ANYTHING HARDLY THOUGHTS OUT.  THE BAD THING ABOUT STIMS IS THAT THEY KEEP ME FROM BEING ABLE TO THINK.  ~Ian

Is there anything that we can do to help? What gives you hope?  

I NEED TO BE BROUGHT BACK FROM THE HOSTILE TAKE OVER OF MY BODY.  IT HELPS TO TALK TO ME SO MY BRAIN IS INVOLVED. THAT WAY MY BODY HAS TO TAKE A BREAK. ~Luke

I AM STILL HOPEFUL.  EACH DAY I GET TO HAVE A CHANCE TO LIVE MY LIFE TO THE FULLEST.  I AM GRATEFUL. ~Paul

I NEED HELP PATROLLING FOR UNSAFE TERRITORY, PLACES THAT MIGHT TRIGGER A MELT DOWN.  STOP YOURSELF AND THINK ABOUT WHAT MIGHT SET YOU OFF. THINK ABOUT THAT HAPPENING TO ME DAILY, SEVERAL TIMES A DAY.  NOW YOU CAN UNDERSTAND WHAT IT IS LIKE TO BE ME. ~Ian

I am so grateful to be a part of this incredible RPM community. My thanks to Lisa and Philip for their leadership and kicking off this discussion on the brain and body! Another huge thank you to my clients and their families who teach us something new every day! ~Elizabeth

Saturday, August 9, 2014

Video: Philip Typing About News in Iraq

Transcription:
Lisa: What is going on in Iraq?
Philip: In Iraq there is fighting because Muslim terrorists are openly persecuting the minorities.
L: What should we, as the US, do?
P: I think we should fight to help them.

Philip also typed today:  I want to type well because it is utilized in many situations.  Real world uses the typed word all the time.  For we come to communicate by texts, facebook, and emails.  I am now part of the digital age.

Yes you are Philip!  How exciting it is to see Philip progressing in his knowledge and skills, and becoming more and more included in the greater world.  Philip is the first to tell me he is not exceptional.  He has had the opportunity to learn to communicate because of Soma.  He now wants to make sure all those who cannot effectively speak can have the same chance to communicate through spelling and typing.  Philip wrote on his Facebook page last week:  I am not being notable being a learned kid with autism. There are many like me.  Heading to mean to rescue them from their silence.

*  For those of you wondering, Philip uses the iPad app called Assistive Express and the Apple Bluetooth Keyboard.

Thursday, July 31, 2014

ICI Conference

The Institute on Communication and Inclusion (ICI) at Syracuse University has a yearly 3-day convention in which individuals using alternative forms of communication such as FC, AAC, or RPM join together with their supports for talks, practical workshops, panel discussions, exhibitions, and meetings.  It is a place where each person is considered intelligent and competent no matter their diagnosis.  It is a safe place where differences are celebrated and stims such as flapping, pacing, or rocking are welcome. Philip and I were treated to talks by Naoki Higashida, a Japanese Autistic young man who wrote the book The Reason I Jump, Autistic advocate and activist Lydia Brown, and Stephen Kuusisto, a blind professor, author, and poet.  We also attended workshops to improve typing and panel discussions on inclusion in school and community.  Along the way, Philip met Autistic friends Oliver, Daniel, Amy, and others.  Philip had this to write about his first time experience at the conference.  

This week I went to the ICI Conference.  I had a nice time.  I am glad I went even if I was scared of the crowds.  Each day I learned to accept autism more.  I learned I am not alone.  On day 1 I met Naoki Higashida.  He is learning from his mentors too about acceptance.  I get his feelings tons each day.  He decided to reach out to other nonverbals.  I am going to try myself to reach out as well.  If reaching out is my calling, I am hearing it loudly.  I picture the meaning of life is learning to accept my autism in the world out there.  I want to mean to really notice like-minded wretches (a reference to the movie Wretches and Jabberers in which the non-speaking Autistic typers refer to themselves as the Wretches) to help them communicate.  I learned to meet others like me is important.  I met Oliver and learned I am not the only one who has difficulty typing.  I am daring to improve by next year.  I am weary of beating up myself because of autism.  I want to be free to be autistic and make a life understanding my very good purpose.



         Taking a rest from the typing workshop.
                                          Meeting Oliver and brother Sam

Wednesday, July 23, 2014

I Am Meaningful

By Philip Reyes

I am somebody.
I am your son.
I am a brother.
I am a cousin.
I am a student.

One day I can be an educator,
A rounded person to imitate.
I can be a worker,
Make a really good living.
I can be a loving friend, 
Someone to confide in.

I am autistic, but I am learning I am much more.
I am me and I like me a lot.




Monday, July 21, 2014

Change

Today Philip and I discussed how some changes happen in society.  We contrasted revolutions and grassroots movements.  Revolutions are marked by a sudden change in power in which the powers that be are replaced by another power at the top, often by violent means.  The Bolshevik or Communist Revolution which overthrew the last tsar, is an example.  It's leader Vladimir Lenin, a politician of noble background, was moved by Marxist theory, but he himself was not from the labor class of which he claimed to speak for.  In contrast to revolutions, we looked at grassroots movements, an example being the Civil Rights Movement lead by Martin Luther King Jr.  Grassroots movements are distinctly different because they are formed from the bottom up rather than top-down.  Philip summed it up best by writing with his letterboard, "It is daring by the oppressed."  In grassroots movements, ordinary people come together to influence the change they believe in whole-heartedly, without concern of power or position.  Their passion comes from truly wanting to better the lives of others.  

On the topic of change, Philip wrote:

I want to each day so care for each Autistic by establishing RPM as the standard method going to school. Right now the standard is remedial work.  It otherwise is ABA.  ABA is too repetitive and boring.  No demands are made on our intellect, only on our uncooperative bodies.  I escaped this model of education. RPM teaches me something new daily.  RPM is day to day meaningful learning and communication.  I am now in a generation of so-called non-verbals who come to learn RPM to talk with a letterboard.  You should dare to listen to us.  We are not deceitful.  Instead we are really kind and caring.  We are trying to help each other.  You really show care when you dare to meet us where we are learning notable RPM.  

Philip


An outing with Tito Mukhopadhyay during Soma's RPM Workshop in Buffalo.  Many families and professionals were able to learn RPM for their children and clients for the first time.  The kids participating were able to show everyone how smart they are!

                                                            Philip and Tito