Wednesday, June 29, 2016

Living With Purpose

A Reader writes:

Hi Philip,
I am writing to you because today I was just with my 11 year old grandson who was visibly so upset and then everything came out: he has no friends, crying because he hates school and already worried about the next year when he just go out. He makes statements like he doesn't know why he is alive and then when he gets upset is mad at himself for getting upset then says he doesn't like himself. I am heart broken and wondering if you ever have these feelings. I'm so upset as I write you I am in tears.  My heart aches for him and I always just try and listen.  Please if you could write me back and let me know how you feel at times.  Thank you.

To ___,

I have had feelings like your grandson too. You are a good grandmother to write for advice. He should know he is loved no matter how he feels. I have made peace with my autism by living with purpose. Day to day I teach people about autism in my writing. Your grandson can find his mission too. God makes a plan for every person. He saves our lives to be used for good. Can he make his interests become his mission? I make use of my autism. That is why I am happy as I am.


Tuesday, June 28, 2016

On Occupational Therapy

AM writes:
I have a question.  I am an OT.  I work with several young ones like yourself. I have talked to parents about RPM, but they continue on a different path.  What can I do within my treatment session that will benefit these kiddos the best? Thank you in advance for your answer.

To AM,

I am day-to-day looking for solutions to my problem of finding my body in space. I want to act appropriately. I am naturally an awkward person. I move when I am supposed to be still. I freeze when I am supposed to move. I can’t get my body to move right. I have brain-body disconnect. It is meaningful when my brain and body cooperate.

I would like an OT to day-to-day come up with a plan for me. I want good skills that help me do things around the house and at school. I want to be able to pick out my own clothes and dress myself. I want people to think I am helpful. I pay attention to another person who needs help. I want my body to be motivated to help. My mind wishes to help. But my body rebels like a naughty child. I may want to be a man but my manner is like a child. Bearing my body is the hardest thing. I love my autistic thoughts but not my motor problems.

An OT can help by understanding our sensory needs. I cannot feel my body in space. I think an OT can make me learn to find my body in space by exercise, more weight training, and practicing muscle memory. Bike riding was learned this way. Bike riding is now my favorite thing to do. I lament very useless things done in OT. No benefit came to me from swinging or being brushed on my skin. It was a waste of time. I am glad I don’t have to do that anymore. I want to learn important skills with an OT. Reading a book on my own, writing words, drawing pictures, typing independently, and managing my self care are things an OT ought to work on to help me.


Wednesday, June 22, 2016

Starting RPM and the Problem of Automatic Movement

TF asks:

Is it normal for there to be a lot of frustration when starting RPM?  My son tried to spell something on the board tonight but I could only get some of it out of him.  He said, "no one ever noticed."  Now he's in bed screaming.  I keep trying to comfort him but it's just not working.

To TF,

I want to talk about starting RPM. When I first started, I got frustrated because I wanted to be able to do it well right away. But I was unable to get my body to cooperate. I talked the answers in my head. But my very carefully made answers could not be expressed. I had to practice every day. I tended to go to an automatic motion. I went to make a motion to spell my answer but my finger would get distracted. I needed a prompt to get me out of my automatic responses. I am truthfully trying to do my best to get my words out without getting distracted. It is hard for me. I can’t get myself out of my automatic rhythms sometimes. My body can feel like it has a mind that is not in control of it. I may know exactly how I want to move, but my body has a set of commands it follows that I did not order. I am coaching myself constantly to carry out the right instructions. I am daily fighting the impulses that make my body automatically move without the planning from my thinking mind. It is very tiring and a part of my life always. No one can fully understand unless they are autistic too.


Tuesday, June 14, 2016

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.


 At a church club called Christian Service Brigade

My baptism

Sunday, June 12, 2016

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.