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. 
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.

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