Empathy

I am empathetic. I can feel people's moods.  I am too sensitive. I mean to not be affected sometimes but I cannot help it. For example if someone cries by me, I cannot help but feel sad too. I have lots of anxiety when people around me are upset. It can be a burden because I feel the weight of their sadness too. I am trying to give this burden to God more. In prayer I look to God to help those who need help.

I am loving too. Opportunities to make people happy and blessed are very welcome. I look back at the times people were nice to me. I am thankful for those good memories. People need meaningful personal interactions to help them feel good about themselves. I am happy when I can help. I now blog and meet with people to light the way for others so they don't live being misunderstood by their family and community.

I am still struggling mightily. My impulses get the best of me and I hate it. Meaningless actions my body does when I am stressed leave me embarrassed and ashamed. I try to understand inside my mind firing neurons from impulses and trying to stop them with other neurons in a thinking part of my brain. Peace laces pain of real magnified mistakes from popular misconceptions of autism. Popular misconceptions cause lasting callouses that ache. I plan to break old ideas that autism means I am diseased or defective. Because of these ideas I was made to think I am not deserving of good things or meaning in my life. I became hardened to not care about my life. I am now just starting to heal. Peace comes from walking with God and making a difference in the lives of others. I am caring that others like me live free from being misunderstood.  Making search for autism causes is not helpful to those living with autism. Empathy and making communication a priority are the most important things you can give us.

Philip on the first day of 7th grade

Copyright 2015 Philip Reyes.  All rights reserved.

Moses and Fear

As I wrote in yesterday’s post, Philip wanted me to teach him a lesson on facing fears over the weekend.  It just so happened that today I was leafing through Philip’s Stockade achievement book and the next activity was called “Controlling Your Fears.”  It was a lesson on Moses.  It was one of those little moments when you feel God’s smile and wink in your direction as He gifts you a little surprise.

I read Philip the story of Moses from Exodus 3 and 4.  It is the story of God calling Moses from the burning bush to send him to Pharoah to deliver the Israelites out of slavery in Egypt and into the Promised Land.  Moses was understandably intimidated by this tall order and kept coming back to God with excuses, even to the point of pleading, “O Lord, please send someone else to do it!”  

We began talking about fear as a natural part in everybody’s lives.  Fear can be good because it helps us to think before we act and avoid doing something stupid or dangerous.  But fear can be harmful if it keeps us from doing good things, including what God would want us to do.  We read from Exodus and then Philip answered the following:

When does Moses begin to be afraid? (Philip's answers in bold)

He began to be afraid when he hears God in the burning bush.  God says he was going to rescue His people.  It made him feel like he was solely responsible for all the people.  He was scared.  I am sure I would be scared too.

 

How does God comfort Moses?

God said “I will be with you.”  He is I AM.  He is timeless.  

In Exodus 4:13, why is Moses saying no to God? 

I think he is thinking he is not good enough to accomplish God’s plan too well.

What would be different if Moses trusted God?

He would be brave.

What would have happened if Moses let fear get in the way of doing God’s plan?

He would not see God’s glory.

How did God help Moses conquer his fear?

God answered Moses by letting him have Aaron to help him speak to Pharoah.  God gave him signs to show His power.  God gave His word.

What are some of your fears?

I am fearful of a hard life as an autistic.  I am tired from living in a world made for normal people.  I am tired of word spelling to talk when others get to talk normally.  I am sorely lonely.

  

I fear total elimination of autistics due to illness prevention programs.  Autism is not an illness.  It is a variation of humanness.  I do not want to be cured bc to be cured means to die.  There is too much talk about cure.  It is hurtful.  It makes me feel worthless.  It makes me feel so sad.

I fear the kind of learning most autistics get.  I am fearful that they won’t be educated to address important skills to understand the world and get a chance to communicate.  I fear they will get hurt by restraints.  I fear they will get nowhere.  No way out.  I fear they are so sad.  I fear there is no hope.  I fear they will die without a trace.  I fear they are terrified by the teachers who do not know they are smart.  Each day I yearn to help them.

How does God help you with your fears?

God helps me care about others to help them.  He works to help bring me to people who can help me.  He lead me to Soma coupled with Tracy, Harvey, and Lisa.  He answers my prayers to speak and learn.  God is my Savior and Lord.  He is always with me.  I do not have to be afraid with God.  He is my courage and strength.  I am blessed.  The end.

     

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

     

       

Birthdays

Today is Philip’s 11^th birthday.  His due date was March 14, the same birth date as his older sister Ana.  But Philip took his time and was born 3 days later on St. Patrick’s Day.  I remember my Auntie, who is now in heaven, imploring us to name him Patrick, but we stuck to our original name picked out: Philip Mark.  Philip is named after Philip the evangelist and Mark the Gospel writer in the Bible.  The story of Philip is found in the book of Acts chapter 8, verses 26-40.  Philip was lead by the Holy Spirit to an Ethiopian official in his chariot studying the book of Isaiah of which he did not understand.  Philip explained the prophecy about Jesus and told him the good news of the Gospel.  The Ethiopian received the Good News with rejoicing and was baptized by Philip.  Philip went on to preach the Gospel throughout the nearby towns.  I always liked that story and envisioned Philip a good namesake for a boy I’d hope would bring the Good News to others someday. 

For most kids, birthdays are a joyous time of celebration with friends and family.  There is anticipation about the new year and what milestones lie ahead as the child grows and becomes more independent.  During the period of time between Philip’s diagnosis of autism and before the advent of his communication, each birthday of Philip’s was a bittersweet occasion.  We would celebrate with family and friends and even have children’s parties at My Gym or in the back yard with a bounce house when we lived in Miami.  We took pictures of our happy family and Philip opening presents and eating cake. But after all the guests went home, I would mourn another year lost.  In my mind, Philip’s window of recovery was shrinking with every passing year.  Every year he fell further and further behind his peers.  Every year he would be less tolerable in public as he grew in size but remained at a static developmental level (so I thought).  And then there was always the thought lurking in the recesses of my mind: what will happen to Philip when he grows to be an adult?  Where will he go when we are too old to take care of him?  It was a thought I mostly tried to shut out because it was too scary and painful to think about.  As Philip grew older, the less I thought his name fit him.  How could he be a herald of good news without a voice?

That all changed October 23-26, 2013 when we took our first leap of faith into trying RPM for the first time.  In Soma’s HALO Clinic in Austin, TX, we got our first glimpse into Philip’s potential as he learned to listen to Soma’s grade level lessons and demonstrate his comprehension by choosing from written choices and then spelling.  He even answered some open ended questions.  Many of these stories have been written about in previous blog entries such as here, here, and here.  Philip’s voice did not develop overnight and it did not develop in the way I envisioned.  There was no magic pill and Philip’s transformation was not overnight.  He did not become less autistic in appearance, yet his maladaptive behaviors did improve.  He is in every way autistic and wonderful.  Yesterday I reviewed the videos I had taken 7 months into RPM, then 1 year, then a year and a half.  How encouraging it was to see the gradual progress!  And through all those years I had waited for spoken words, I never had envisioned the joy I would feel in seeing his words emerge letter by letter on a letterboard.  They are more precious than gold to me.  It was the reason I started to blog so I would never forget them.  Of course I still would love to hear Philip speak with his physical voice and hopefully one day he will, but I am beyond grateful to finally know what Philip thinks and I will take his words however I get them!

Even though today is Philip’s birthday, we celebrated yesterday.  It was the first time Philip gave input to what he wanted for his birthday.  We gave Philip a choice between a party with close family at a restaurant or a kids’ party at a playplace.  He chose a restaurant.  He wanted to go to his Dad’s favorite restaurant called Tempo.  It was kind of cute because he had never been there, but he recalled a time he conversed with his Dad about restaurants and they looked up the menu on his Dad’s iPhone and talked about what they would order.  Tempo happens to be one of the most expensive and upscale restaurants in our city, so we bargained him down to a more reasonable venue, a Greek family diner called Spilios.  Philip sat at the head of the table with 15 of our closest family:  Lolo and Lola (grandparents), his cousins, and aunts and uncles.  Philip ordered and spelled for the waitress what he wanted: sprite, fries, eggs over medium, and bacon.  We had homemade chocolate gluten-free birthday cake and everyone in the restaurant joined in to sing Happy Birthday.  Philip looked so happy.

This is the first birthday since his very first birthday, that I have not felt sadness.  I anticipate Philip’s growth like I do my other children now.  Philip’s future is so bright!  It is a clichéd saying that God works in mysterious ways, but He does!  He likes to use people in the most surprising ways.  In the Bible, we see Moses, a prince in Egypt, become the liberator of the Hebrew slaves.  We see Peter who denied Jesus 3 times in the face of fear, become the bold powerful leader of the early church who died a martyr.  It makes me rejoice with awe to see how God has upheld Philip’s namesake in the most paradoxical way.  A boy who cannot talk is indeed bearing good news to the world made manifest in his writing.  Philip’s mission is to change perceptions of autism and give a voice to autistics who cannot speak.  He is accomplishing his mission of hope daily through his blog.  As of today, readers from 39 countries have read his words.  He has encouraged children around the world like himself through exchanged emails.  He has inspired parents to seek alternative communication methods for their kids and help them persevere.  He has explained autism from his insider view to allow people to understand and know how to act with respect and kindness towards autistics.  Philip has many dreams and is actively pursuing them.  He is on his way to mainstreaming in school and is setting his sights on becoming a writer among other things.  Who would have ever thought?

This 11^th birthday is indeed a most happy occasion.  Happy Birthday Philip!  May you reach for the stars!