Peace

I am more at peace lately. Peace in my life is letting go of my worries and making God center of my life. Making autism center is not helpful. Man should never be the center. Perfect wisdom comes from God alone. Peace comes from really teaching me about God. My mom reads me the Bible everyday. I learn that God is at work teaching people about His great love. He loves us without ceasing. I am peaceful knowing God accepts me no matter what. Mom accepts me like God does. She loves me as I am right now. This is why I can start to feel my anxiety fade away.

I make more daring decisions now. I used to be afraid of almost everything. I feared a beach with its crashing waves and many people. Now I love playing in the sand and sea. I used to have meltdowns in a noisy auditorium. I feared I would make a terrible scene. Making a scene was a bigger fear than the actual noise.

I have developed some calming strategies. One is to pray. Handing over my worries to God really helps. Wanting to please my teachers has made me not behave as badly as in the past. Naturally I am unable to control my movements and stims well. But now I am able to be in control a little more. I am more able to be calmer in new situations. I am not so fearful of making mistakes. I know I will still be loved by God and by those who see me not as a bad boy but as the real me and still accepts me. I am more courageous. I am facing fears of failure by day to day understanding I will be ok even if I fail. God always loves me.

Philip learning to skate at SABAH

Copyright 2015 Philip Reyes.  All rights reserved.

Valentine's Message

I think love is a feeling of really liking.

I love my family.

I love God.

I love the satisfaction of accomplishment.

I love that I can communicate.

I love my new school.

I love walking around town.

I love light in each thing. (“How so,” mom asked.  Light is good.)

I love now each day. (“What do you mean?”  The present)

I love influencing someone to reach dreams.

I love to sow seeds and watch them grow. (I am telling my story and the Soma letterboard is teaching others to talk.)

One day I will love hearing I am talking.

I love interesting topics like today’s news and spiritual things.

I love coming to need open-minded education. (It is learning to think for yourself.)

I love storing open teachers.

I love America.

I love most reaching-out people (People who try to understand me.)

I love kids who understand me.

I love opportunities to prove myself.

I love answers to my questions.

I love my tons of out-of-the-box thoughts.

I love reaching out to others.

I love going to public world to explain autism.

Love is right to accept.

Most of all, love is each day the only thing that matters.

      

I Love You

I had to write today.  November 16, 2013 will always be remembered because it is the first time Philip spelled the three most important words to me, “I LOVE YOU.”  

Love.  It is the motivation for the highest priorities in life- the reason we marry and start a family.  We want to love someone and have that love reciprocated.  

I love Philip and all my kids to pieces.  I know Philip has always loved me too.  I could see it in the twinkle in his eyes when he smiles at me.  I could feel it in the way he leans into me and smells my hair.  A few times I have even heard Philip speak the words “I love you” with his voice echoing back after I tell him “I love you.”  All of these expressions make my heart melt.  But this “I LOVE YOU” was extra special.  I was not expecting it.

This year my eyes have been opened to a profound truth:  not all is what it seems on the outside.  Just a short year ago, I viewed Philip as being the developmental age of a toddler.  He had hardly any speech.  His educational goals were that of a preschooler such as matching numerals to the number of objects and identifying action words.  He was not fully toilet trained.  It never occurred to me that inside Philip was intellectually and emotionally intact.  He was absorbing everything he saw and heard.  Because I didn’t accord Philip with the same intellect and feelings that a “normal” person would have, I am sad to say, I didn’t always treat him with the same decency I would have had I known he understood.  I allowed him to see the full brunt of my frustration toward him.  I yelled.  I cried.  I spoke about him to others in front of him.  I treated him like someone much younger than his age.

I now know autism cannot be cured.  I think we waste a lot of time, effort, money, and tears pursuing a cure that is not to be had- but that is a topic for another post.  Instead, I strive to heal my son, not from autism, but from whatever keeps him from being whole.  The things that keep him and others like him from being whole are many.  Not having a voice is number one.  When Philip was younger, I placed so much stock on Philip’s physical voice, but because it could not fully develop, his communication became a guessing game to all of us.  The things we called “behaviors” such as tantrums and meltdowns were probably both communication and frustration at not being able to communicate clearly.  RPM has changed that.  Philip now has a wide open and reliable way to tell us anything.  It is the biggest miracle!  Another thing that keeps Philip from being whole is not being able to fully participate in society.  We are helping Philip begin to do this by integrating him and supporting him in his communication during Sunday school and Stockade (scouts), a kids’ fitness class with regular peers, playdates, and just doing more things as a family.  In the future we hope Philip could be fully included in regular classes at school and further down the road find a meaningful job.  The way I now see it, the sky’s the limit!

This evening I was moved to begin healing Philip from my mistakes as a parent.  For Philip’s bedtime, I continued to read through Exodus.  We are at the part with the plagues.  It is neat seeing how God used the Moses/Aaron tandem to carry out his plan.  God spoke to Moses, but Aaron was Moses’ voice to Pharoah because Moses was “slow of tongue”.  I also read some more of the book The Reason I Jump.  There was a part where the author, then 13 year old Naoki Higashida who is also non-verbal, mentioned how he knew he made people’s lives difficult and it made him sad.  As I read it, I felt flustered, not wanting Philip to feel this way.  After reading, as our custom, I asked Philip something he was thankful for.  “LIA TALKING TO ME,” he spelled.  He had a great evening with Lia as she talked to him using the stencils.  At just 8 years old, Lia has amazing patience and a desire to do things with her brother.  Philip is starting to spell with Lia one word responses.  Then I asked Philip one thing he wanted prayer for.  Philip proceeded to spell, “ARE YOU DEPRESSED FROM KIDS?”

“Oh Philip.  I am not depressed,” I answered, “In fact, I’ve never been happier.  I am so glad we can talk and I can get to know how smart and thoughtful you are.  You are teaching me so much every day.  I have never learned so much.”  Then I knew it was time to apologize.  “Philip, I need to tell you something.  I want to apologize for how I treated you before we saw Soma.  I didn’t know how smart you were and that you understood everything.  I know it is not a good excuse.  I am sorry I made you feel like a baby and said things that hurt you.  I am so sorry.  Will you forgive me?”

“Y, (for yes)” Philip pointed.  “Do you have anything else you want to say to me,” I asked.

“I LOVE YOU.”

We held each other and I said “I love you” back.  We said our prayers as my voice shook and I felt God healing us both.           

 December 2011

  

Philip's First Post

Today I will start sharing Philip's original writings.  I asked him specifically, "What should we do with your writings?"  His answer: I WANT THEM IN A BLOG.

I am posting his writings without any changes, except to capitalize the G in God.

October 30, 2013

No one marks the Christian like love. Nothing each day is needed quite like it.  Love is found in moments with each day I am asking God for opening me so much to the world.  Yesterday I was dancing to the music inside my head. I was asking God to make me begin to talk.  An angel answered I cannot make you talk.  Your mission is to help autistics.

 

Kind Kids

Love is patient.  Love is kind.  It is interesting that these two traits are the first ones to describe love in Paul’s famous passage about love in 1 Corinthians 13.  I think if we love each other like this, we have the tools to make a huge impact on people in the world.

We were recipients of this kind of love yesterday.  It was the first time someone made an intentional invitation for Philip to play with their kids who do not have autism.  Ellie is a lady at my church who has been in the area for less than a year.  She started reading this blog from facebook and sent me a message to see if Philip would like to have a playdate with her kids.  It was very touching.  I responded yes, but wondered how it would go.  To my eyes and the eyes of most people, Philip does not know how to play.  He doesn’t even play with me or his siblings.  He often walks away from a group of people to do his own thing.  It takes a whole lot of patience to do any interacting with Philip.

Ellie and her kids Nelson and Audrey arrived at our house at 4pm, shortly after Philip got home from summer school.  I still had no idea what we were going to do.  We made introductions and I tried to get Philip to say something to the kids on his letterboard but he was pointing randomly.  I decided to let Audrey play with Lia as they are the same age and get along very well at church.  It would be easier to start with Philip and Nelson playing one on one.  We went to the backyard to let the boys get to know each other.  They jumped on the trampoline while I talked with Ellie.  Then Philip would walk around with Nelson following him.  I think most kids would have given up on Philip, but Nelson was kind and patient.  At one point Nelson asked me if Philip wanted him to leave him alone.  That was very understandable because that’s what it looked like.  I told him of our experience in North Carolina of how Philip sat apart from his cousins as they played, but that later he would tell me that the best part of his whole vacation was being with his cousins.  I told him I believed he was enjoying his company but between his lack of being able to speak and his problems with getting his body under control, he cannot readily show it.  Nelson listened intently with patience and understanding rarely found in a young kid.

At different points, I tried to get Philip to use his letterboard.  When Philip finally sat down, I told Nelson to ask him a question.  He asked, “What kinds of food do you like?”  Philip responded “MELON.”  We got in a little discussion about how Philip likes fruits and vegetables, but not meat.  Ellie piped up, "Nelson is the opposite.  He just likes meat."  Nelson protested, “I like salad!”  His mom gave back a funny look.  It was a cute moment.

Finally, we were able to settle into the table I usually use to do my lessons with Philip.  Nelson sat on his left and I on his right.  I asked Philip, “Would you like to say something to Nelson?”  “Y,” replied Philip.

With great precision, Philip spelled, “YOU ARE NICER THAN A LOT OF KIDS.”

Nelson seemed genuinely touched.  Then, just as a kid would continue with a discussion, he said, “I am nine.  I’ll be 10 in September.  Are you close to my age?”

I gave the number board to Philip to indicate his age, “10.”

I told Philip to show Nelson when he turned 10: “MARCH”

“How many months apart are you?” I asked Philip.  “6” he responded.

Shortly after that we said our goodbyes.  Ellie was so appreciative for our time together.  I was equally so. 

Later that evening we texted each other.  Nelson was excited about the day and looked forward to becoming friends.  Philip told me “Nelson is nice.” And “Y” he wanted to play with him again.

I look forward to seeing this friendship blossom and to seeing the growth in both Philip and Nelson.