Saturday, October 25, 2014

Fall Fun Night

Envision the scene.  Friday night at the public middle school.  Lines of cars dropping off boys and girls, some still with remnants of sweet baby chub, others as tall as adults with the swagger of ruling the school.  Girls running to one another giving hugs and excited greetings and boys in groups ready to check out the games.  This is Philip's first big social event at school.  I accompany Philip as his chaperone.  The event is billed as a family night so there are a handful of us parents bringing younger kids, and I bring Philip's fourth grade sister Lia too who fits in well with the confidence of the kids there.  She finds a friend she knows from church and off she goes.  Philip and I enter the gym.  Around the perimeter are all sorts of games like ring toss, darts, and bowling, set up and run by teachers and older students.  Loud party music plays.  The kids play, mingle, and run about.  The younger ones enjoy volleying balloons around.  It is a happy and festive time.

In years past, Philip would have run from this scene.  Any one of the combination of factors there- the crowd, the echoey gymnasium, music from loud speakers, or a frenzy of motion, would give Philip an extreme fight or flight reaction.  I would have given a valiant effort to drag him in while he screamed and cried, eventually giving up in deep frustration.

However, this night was different.  Philip actually confidently walked into the gym.  He saw a teacher he knew and greeted her.  I tried to back off, standing by a wall, just keeping an eye on him.  The music got him going so he walked around in pace with the music.  At times, he bounced a balloon.  From afar, he looked like any other kid there.  About 6 different girls and one boy tried to engage Philip in interaction.  They greeted him with hugs or high fives.  I knew Philip liked it, but he was having a hard time reciprocating.  He would continue to walk off as they talked to him.  The kids were so nice though and didn't seem at all offended.  One girl in particular gave such a persistent effort, trying to dance with Philip and get him to play one of the games she was running, but he would not follow her lead.  At times, I'd introduce myself to Philip's friends and try to explain that the environment was probably very difficult on his senses.  He was actually doing really well, for him.  We ended up staying the whole time.

Philip was pretty tired when he got home, so the next day I asked his impressions of Fun Night.  He decided he would write it as a letter to his friends.

Dear Friends, 
I liked Fall Fun Night.  I surprised myself by not fighting accosting stimuli.  Accosting stimuli are crowds, loud noise, sound bouncing off the walls, and racing motion.  I am proud of myself for going.  I decided to withstand it to dive into the world, daring to try not drowning in bitterness about being autistic.  I am sorry I seemed to ignore all of you.  I had to keep moving to save myself from going into sensory overload.  That means I practically tantrum to get out of an overwhelming area.  Listening to you talk to me is a delight to me.  Healing talk is needed to help me begin to heal from my years of being treated like I don't matter. Please don't give up on me.  A tap on my shoulder can help get my attention.  We can ask Mr. B to help me type with you.  I am glad to have you as friends.  I am hoping to not ignore you next time.
From, Philip

Philip's 6th grade school picture.  Unfortunately I forgot to bring my phone/camera to Fun Night! 

Monday, October 13, 2014

My Movement

By Philip

I am wanting a chance to explain my movement as a result of my autism and partial apraxia.  I understand I am quite an annoyance at times.  People have a hard time being patient when I run away or seem like I was ignoring them.  I am always listening even when moving.  I can be trying to sit and work.  I am trying to do my best.  People have a task for me but I can't make myself sit to do it without getting up from my seat a lot. I am trying to control my impulses to run from a difficulty.  Difficult things are concentrating hard to each day meet people's expectations and not easily being able to.  I tear apart being unable to succeed so I flee.  I really need to be understood to feel more comfortable and at ease.  Then I am more able to stay still.  It also helps when I am used to a situation.  I can calm myself.  I am more able to do this now that I can communicate. 

I also have difficulty feeling my body in space.  I move to try to not feel like disappearing.  Perhaps I reach for objects to tap to dot my place in my environment.  I piece together lots of stimuli to find my place in space.  I am kind of like an alien built for a different planet.  I am instead trying to make this world my home by adapting as much as I can to the rest of mankind.

Saturday, October 4, 2014

Evolution and God's Design

By Philip

(Lisa's note:  This essay was prompted by Philip's studying of the 6th grade science lesson at school on Darwin, the theory of natural selection, and modern evolutionary theory.)

Evolution is a phenomenon at work on a partial level.  It is working in instances of pertinent similar organisms.  I believe in a biological evolution for organisms which are simple.  These include single celled organisms like protists and bacteria.  This was God's plan for their survival.  Taking away this mechanism would lead to extinction.  To pristine organisms such changes to environment leaves them perishable easily.  Reasonably under the selectionary process of evolution, simple species can momentarily adapt to environmental pressures.  An example is new strains of bacteria.  Bacteria can develop resistance so they don't die out forever.  Bacteria are useful in many ways.  Without them, no other organisms could exist.  That is why evolution happens under God's design.  

I believe larger organisms were specially designed by God in the way we see them.  They easily exist at God's command.  God purposefully made each thing out of nothing to please Himself and have a relationship with Him.  I am attracted by God´s creation to seek Him and His natural laws.  Einstein uncovered such amazing order.  I am easily moved to praise God for caring to bear love on us.  I am made by God as He intended.  He made me Autistic as a way to tether me to Him.  He causes me to depend on Him always.  I am specially made by God to glorify Him through my life with autism.  I appear not to be useful to people but people like me think out of the box and help society see a new point of view. Temple Grandin sees in pictures and knows cows like no one else.  I seem aloof but I notice everything.  I appear not listening but I hear it all.  Time goes on and people like me keep being born. There are more of us each year.  How does evolution easily explain this?  I believe God has a purpose for us to improve mankind to cause another movement toward a society of special needs acceptance. I tried to understand evolution for humans but people are made in God's image.  They can't be related to other animals.  I think it is wrong to make the popular assumption that we evolved from a common ancestor as monkeys.  In doing so, each person is denied dignity.  The reason to protect the vulnerable is gone.  I would not survive.

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

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