Middle School: My Transition to Society

Simone writes: Hi Philip, my son is turning 15 now and he will start attending his first regular class next school year.  Can you share your experience and also give us some advice based on your own transition?

Transitioning from my autism school to regular school was a long process. I wanted to learn more interesting things than my autism school had to offer. I looked for more challenges to keep my mind sharp and active.  I wanted a regular education. I wanted to be like my siblings getting interesting things to learn about.  

I am learning to be patient about reaching my goals. Being in a body like mine is difficult. My body is geared as one built for another planet besides Earth. I have a difficult time feeling my body in space. I feel as if I don’t have weight.  I need a lot more sensory input than most people. I get input by moving, tapping, sniffing, and deep pressure to my body. Once I get calm, I need less input. Teachers learned that I needed sensory input throughout the day so I could feel calmer at school. I was allowed to take walks with my weighted vest before my regular classes. I had times I could have a break for listening to music, rocking on a chair, or smelling nice candles. It was a good thing to have sensory breaks.

I have made a lot of progress throughout my time at Heim Middle. When I look back when I first started in the middle of 5th grade, I am amazed I was not kicked out of the school. I talked less than almost all my autistic classmates. I could not use my letterboard well for my teachers. I got so anxious around everyone because I felt like I was a burden and a nuisance. This led to many meltdowns during my first few months at school. I was frustrated because I wanted to show I was smart and belonged there. But my body was like a wild bull not wanting to obey anyone. I would even make my teachers frightened by my aggressive actions that happened when I became overwhelmed with frustration or anxiety. I am fortunate my teachers put up with me while I was adjusting to a new school.

I got better at managing my body eventually. I learned to realize that even though I felt my body's negative sensations due to anxiety or stress, I could talk to myself about letting it pass without as much negative behavior from me. My mom and I started a morning routine of reading Bible verses and a devotion about it. I would write a morning report about it and post it on Facebook. I came to the realization that I could sit still by concentrating on God’s word and what I learned from it. I could calm my worries.

When I was able to relax more, I started to type much better with teachers. I got used to each person’s style of working with me. I wanted to work harder to be able to participate in regular classes. I was not able to go regularly until grade 7 when I started science, social studies, and technology. I learned to advocate for myself by typing my intentions at my IEP meeting. I almost was denied the opportunity but my speaking up in person made the difference.

My body is still lacking control though I have come very far. Taming my body is more than I can handle alone. That is why I needed an aide at all times. An aide keeps me on task and makes sure I do not get too distracted. I could not get through my days without my amazing aides. I learned to be more disciplined with my body but I know I must continue to work hard at this.

Impulsive behaviors sometimes set back my progress. I sometimes get in a phase of impulsivity where I do irrational things like flipping light switches rapidly or slamming doors. I know it annoys others a lot but I feel compelled to keep doing it. I have learned when I get impulsive, I have to stop what I am doing and question myself why I am doing it. I can sometimes make impulses go away faster now.

I have just finished 8th grade. I participated in my graduation ceremony. I walked across the stage by myself to receive my certificate. It was a very proud moment for me. I even went to the dance after. It was fun. I am going to miss Heim very much.

I am both excited and nervous to start high school.  It will be brand new with different teachers and aides. It is going to be another adjustment but maybe I will be more able to adjust better now. I have gained a lot of wisdom these past few years. I want my high school experience to be as good as middle school.  I hope everyone there will believe in me like my teachers in middle school did.

Philip

Copyright 2017 Philip Reyes.  All rights reserved.

God and Church

J writes:

Philip how did you get such interest in the Lord?  I have an Autistic grandson.  He went a few times to church with me but now he won't go back. Same is true of his CCD classes.  This concerns me because like you I would love for him to find the Lord. He does say Our Father every night because he said when he does he doesn't have bad dreams.

To J,

I have loved God since I was very young. I daily talk to him and pray and sing to Him. I love making songs to God in my head. I was really making a meaningful life with God before anyone believed I was smart. God knew my thoughts and taught me. I learned to listen to God’s voice to let me know He saw me and loved me. Peace was learning to treat my autism as a link to God. I very much needed God. I was not liking my silence. My life here achieved nothing. I could not echo my thoughts out loud. My mouth could only echo what I just heard. People thought I was hopeless.

RPM finally lifted me out of my silence. I learned to communicate by spelling my real thoughts. I loved finally being understood and peacefully connecting with my family. It made my life change so I could become more included. I was meaningfully living my days now. Lots of my family was so grateful for now knowing me. My life here had hope now.

Church was a place I always felt loved. People cared about me and wanted to help my family and me. But church buildings can be loud and hard to be in. I think there can be places to worship that have more calming acoustics. I used to do better in Children’s Church where the room is not as big or loud. Now I can go to the big church even though the room is loud. I gradually got used to it. I think your grandson should go to church but go with how he can handle it. The peaceful way to go to church is not to force him but if possible let him be part of Sunday school or other church groups. Someday he might want to go to church on his own. Leading your grandson to know God is the most important thing you can do.

Philip

 At a church club called Christian Service Brigade

My baptism

Our Grace Story

Today Philip and I had the opportunity to tell our "Grace Story" at church today as part of a new tradition at our church to share how God has blessed us.  Later, Philip typed, "I was delighted about today.  I want to share on blog."  This is what we shared today.  

By Lisa

           Hi my name is Lisa and this is my son Philip and I am here to tell you about how God has worked in our lives.  Our story began before Philip was even born.  Sam and I chose to name Philip after Philip, who explained the Good News, to the Ethiopian in Acts chapter 8.  We wanted to dedicate our son to God to be an evangelist like Philip.  When Philip was just a few months old, we dedicated him here at Randall with our other children Carlos and Ana.         

When Philip was around 2, I started feeling that something was not quite right with Philip’s development.  His speech wasn’t coming in and he didn’t seem to keep up with the other kids in our playgroup.  At 2 1/2 , Philip received the diagnosis of autism.  For me it was the hardest news I had ever received, but a lot of it was due to ignorance, not only my own, but by much of society, including doctors, educators, the media, and so-called experts, who did not clearly understand what autism was.  Autism was and still is characterized by a list of deficits:  lack of communication, lack of social awareness, and abnormal behaviors.  No one was able to tell us why these occurred, but suggested we go full speed ahead in trying to remediate these deficits.  We were quickly initiated into the crazy lifestyle of an autism family desperately trying to rescue their child from autism, which in our minds was bad.  From age 2 ½-5, Philip went to school, had an additional 2-3 hours of therapy after school, and went on many restrictive diets and alternative medical treatments in the attempt to ameliorate these deficits.  But for all our efforts, Philip showed very little outward improvement.  Until the age of nine, we all assumed Philip was at the developmental stage of a toddler, and in my mind, there was little hope he would progress much further.

From the time Philip was diagnosed, I clung to Romans 8:28 as my lifeline. 

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

             This was very much an exercise of my faith muscles, and at times I got so weak in my faith waiting for the good that God promised.  At this time I can say I was carried by many believers.  My Aunt Maricel continued to pray daily for a miracle for Philip.  Jean often counseled me over lunch and our weekly prayer emails.  My ladies Bible study which included Deb and Nichole prayed continually for Philip and me.  When I look back at all the prayers said on our behalf, I am just so amazed at how God answered each one.  God is so good!

            It was the summer of 2012 that I first heard of Soma and Rapid Prompting Method or RPM.  I met Susan and her son Michael at a local special needs bike camp.  Michael was a few years older than Philip and also nonverbal, yet he was able to type to communicate and attend regular school.  Everyday for a week, Susan showed me the things he had written and leant me books about other Autistic people who communicate this way.  I wasn’t sure RPM would work for Philip, but I just knew I had to try or die wondering if this would have been the key to unlock Philip’s voice. 

            In October 2012, we made the trip to Austin Texas to work with Soma, who is herself a mother of a nonverbal Autistic son.  Through her own careful observations and ingenuity, she developed her own teaching method in India, where there is no such thing as autism treatments.  What ensued for 4 days was nothing short of a miracle to us.  Soma talked to Philip as if he were any other 9 year old boy, giving him lessons about the water cycle, the Pilgrims, Aesop’s fables, and math.  Philip says she was the first one to believe he was smart and capable.  Philip demonstrated he understood Soma’s lessons by picking from written choices about the material and spelling answers on a letter stencil.  He was almost 100% correct! At the end of the week, she had Philip tell us what he wanted for Christmas.  We had never known any of his desires before so it was with great anticipation, we watched Philip spell out RADIO.  It made complete sense because he has always loved music. That Christmas almost everyone gave him a radio.

            Since Philip’s breakthrough, we have worked very hard using Soma’s technique and Philip has truly flourished in all aspects of his life.  He attends Heim Middle and is partially mainstreamed, he has many friends both autistic and “neurotypical” (which means the rest of us), he participates in all sorts of activities in the community that he could not handle before- Stockade, movies, concerts, pretty much anything.  He can ride a 2 wheeler and is learning to ice skate.  The one thing that tickles me the most is that he is a world renown blogger whose articles have been read in over 100 countries.  He has been sought out by parents, teachers, and many others to answer questions as a real expert of the autistic experience.  He has been able to provide the explanations behind the symptoms of autism, explaining how the same senses that appreciate God’s creation are the same that become easily overwhelmed; and that though his mind is intact, his body is hard to manage and does not easily obey the commands from his brain.  In many ways Philip is helping change the conversation about autism by simply telling his story.  I now know God made Philip autistic for a purpose and for God’s glory and it is good.  Philip is fulfilling his calling and dedication, which was planned by God before he was born.

            As for me, I have found my calling as well.  This year I started working with other families, teaching them RPM.  It has been a tremendous joy.  This fall we are assembling a team of experienced RPMers to teach new families and we will work out of Randall.  My prayer is that we may be a church who will love and come alongside many more people with autism and other disabilities so that they too will know the love of Christ.

By Philip

God is the most important thing in my life. He was there always. Before I made my breakthrough, God saw me and talked to me. He loved me as I am. Many people thought autism was bad. God made me autistic for a reason. He gave me senses to hear God. I hear him in my dreams. I love his creation. I could appreciate it all day. I love to feel the wind. See the flowers. Hear the birds. People made autism be about being defective. I was put through many treatments to try to make autism go away. They did not work. That’s because God made me this way for a purpose. My purpose is to tell people that autism is not bad. It is another way of experiencing the world. Teaching people about autism from my point of view is my life’s purpose. I never want to be famous for my own popularity. I want people to see God. I want people to see autism as a meaningful part of life.