Tuesday, September 23, 2014

Letter to RPM Peers

Dear Each One Trying RPM, 
I trust you are very smart.  You have potential like anyone else. Heighten your potential by practicing writing your opinions of the world.  If you are just starting, know you earn your true voice by practicing hard each time possible.  You have to be patient learning step by step.  You have to be a person never giving up.  When I first started I thought it was so hard.  I hardly took real lessons before. I loved real learning but the showing what I knew was tiring.  I had mom each day taming my impulses from doing what came naturally for many years.  It took so much energy but it was worth getting my thoughts out.  I would often have meltdowns.  I am getting purposeful movement more with each passing year.   Follow your teachers and try to push yourself up further than yesterday and you will put yourself in a place where you can be free. 
From, 
Philip
Not being able to speak is not the same as not having anything to say.

Monday, September 15, 2014

Philip's Baptism Video

This is a short clip from Philip's baptism on August 24, 2014 which was shown at our church the following week.


Wednesday, September 10, 2014

A Letter to Communication Supporters

Tonight I got back from Philip's school open house wondering how I could help Philip's teachers maximize their success with supporting Philip in his communication methods at school.  At school Philip uses both a letterboard and a bluetooth keyboard for an iPad to communicate with his teachers.  He communicates with his lead teacher, a speech pathologist, a teacher's assistant, and 2 classroom aides.  As to be expected, his teachers vary in their ability to work with Philip.  With one teacher, Philip can produce sentences.  For a few, he types 1-2 word responses.  And with the brand new aide, he is still struggling to even get a word out.  Some days he is better than others.  What were the reasons for this, we all wondered.  How could Philip better show what he knows with different people and with better consistency?

When I got home, it was already 9 in the evening.  I asked Philip if he wanted to write a letter to his teachers to explain how they could best support him.  I gave him the option to write it tomorrow, but he wanted to write it now.  It was that important to him.  I thought Philip's letter was very insightful and asked if he would like to share it on his blog as it might help others in a similar situation.  "Yes," he typed.  So here it is... (typing is kept as is from his Assistive Express App)

dear teachers, to help support me, you should believe i can do it. hope for the best. try hard to wear each day a daring smile. dare to try reaching me by seating me in some real nice chair. i reallize i am too tiring sometimes. you each will do best if you understand i am trying my hardest. you really don't need to lecture me so much. i am open to erasing stims to answer. to help me drop stims, drop bead of sweat by witholding talking about how trying i am and instead hold me to each task to finish. outwardly i look defiant but i so so much want to open up to you. you have futility when you are unsure of yourselves. i can feel your tension and that blocks me from writing. try to relax with me. you are healing kids from torment of silence when you reach out to me with desire to really get to know me. from, philip


First Day of 6th Grade


 

Wednesday, September 3, 2014

Communication is Power

This was originally written in March 2014 and published on September 3, 2014 in The Golden Hat Foundation Blog at http://goldenhatfoundation.org/about-us/blog/167-communication-is-power

By Philip Reyes

Hi, my name is Philip. I am eleven years old. I live in Buffalo, NY and attend public school. I am autistic and proud. Autism is a different way of noticing the world. I listen perfectly and my senses address my understanding of things. I am smarter than I look. One day I hope to use my intelligence to contribute to society.

Communication is vitally important to all people. Before I could communicate I was trapped in my autistic sounding board. I could not reach out with my thoughts. I only had myself to talk to. I was made to perform like a trained animal. I was treated as such. I stopped respecting myself, stopped opening up to others. I was without hope someone would know me. I retreated into my own world. To stim gave me pleasure not available to me otherwise.

When I was nine, my parents took me to see Soma. I was surprised she talked to me regularly. She challenged me to picture my life differently. She was the tower of strength I needed. I put my life on the line. I would understand the stakes of communicating so I could be known by my loving family and others. Learning to express myself was peace to my soul. I poured my energy to Soma to please her because I liked her so much for believing in me.

Philip communicating with his mother

Today I am blogging about the power of my communication. I am no longer sad about being autistic. I am happy being able to express my opinions and views as an autistic. I am spreading hope to other autistics that they can live meaningful lives. I am always learning and improving my skills. I have hopes for becoming a writer and advocate for autistics. Now I can tell my story.

Biography
Philip is a 5th grader at Heim Middle School in Getzville, NY where he is supported by his teachers to use a letterboard and iPad to participate in regular academics. He has 3 siblings: Ana, Carlos, and Lia. Philip is non-verbal and at age 9, first learned to communicate with a letterboard stencil from Soma Mukhopadhyay at her HALO clinic in Austin, TX. He is refining his skills to include typing on an iPad and even some speech. Philip’s interests and hobbies include swimming, soccer, reading biographies, studying the neuroscience of autism, and expressing his views on his blog at www.faithhopeloveautism.blogspot.com

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