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.

            

Monday, May 30, 2016

Behaviors and Making Better Choices

MK writes:

I have a question for you Phillip. Do/did you ever have challenging behaviors? Especially when you were overstimulated and nervous? Some friends hit or scream out. I think people would want to know what to do when someone with autism is reacting in an inappropriate way. I think people try to help but only make it worse. What is your opinion? I have many friends with autism so I have lots of questions for you.


To MK,

I have had some harmful behaviors. The most common behavior I have used is grabbing. I have grabbed people’s clothes and arms. I did this when I was overwhelmed with anxiety and stress. I mean to day to day be able to control my frustrations but I can’t always succeed. I am learning to last longer at meeting challenging situations by not resorting to my behaviors.

It was bad when I grabbed at my teachers at school. At one time I would grab a teacher’s collar if I got nervous about anticipating doing something difficult at school. I would continue to grab if I was made to do what was making me nervous. I could not stop. I hated my grabbing impulses because they would bury me in a fit of rage I could not come out of. I had to carry out the impulse until I had no energy left. I am ashamed of my behaviors. It was mean of me and I hated my actions. I knew they hurt people and made things worse. I would make people afraid of me.


Meaningful ways to better deal with stress and frustration should be talked about. I think some learning of coping skills should be understood. Learning Bible verses and daily devotions has helped me make better choices about my actions. I now try to learn self-control by meditating Bible teachings and praying to God to help me. I feel more calm and at peace. I am teaching myself to hear meaningful advice and follow it. I am now able to tell myself that I can do it. My autism may make things difficult to accomplish but accepting help from God and others makes me able to make each challenge easier to meet.

From,
Philip


Thursday, May 19, 2016

Advice About Interacting With Me

Rick asks:  How are the best ways for people to introduce themselves to you, talk to you, and interact with you?

I like talking to people. I am interested in learning about others and getting meaningful friendships. But learning to interact with people is hard work. I get nervous around people. This is because of lots of things. I mostly get nervous about not being able to meet people’s expectations about me. I am smart but my body is not obedient to my mind. It makes me look stupid, misbehaved, and foolish. That is why I am anxious in public. I can appear like I am rude and uninterested in you. Please don’t take my lack of eye contact and the way I walk away as a sign I don’t like you. I am not in control of my body.  

I like when people can see past my weird behaviors and be patient to listen to me. Make me more comfortable by peaceful patience. Learning to be social is hard but I want it badly. Please say hi to me even though I look like I am not interested in you. I mean to say, “Hi, how are you?” but it won’t come out. Be patient while I type. Be persistent with getting me to learn about you. If I walk away from you while you are talking, it means my body is nervous and needs to move to calm itself. Please don’t take offense. I wish I could stop myself from walking away. You can follow me or wait for me to come back.

I love my relationships in school, church, at home, and on Facebook. I can communicate pretty well but I am slow. I think the Internet has been a wonderful thing for people like me. I can talk to many people at once. I can teach people about autism. I can write my friends letters and texts. My good friends are people who love me and accept my autism.


Philip

My friend Kevin loves to take selfies of us with my iPad!

Wednesday, May 11, 2016

How I Have Learned

Dear Phillip
I have a question for you and your mom please.
When you were young before RPM, how did you learn?
I mean did you learn from your therapy sessions or was it from your mom or was it self learning?
Thanks a lot,
MH


Dear MH, 

I have been learning since I was very young. I look like I can’t learn. I waited to make my intelligence manifest. When I was practicing talking as a young child, I would get mad about not being able to say what I very much wanted to say. I wanted to tell my family I was smart, that I wanted to make conversation, and I love them. I wanted to talk so badly. Instead the wrong words came out.

Learning comes from all around me. In practically every moment learning about the world happens. Learning to make an opinion starts with making observations. All you need are your mind and senses. I make use of all my senses. My most relied-on sense is my hearing. I used to learn to read on my own by matching the words mom read to the words on the page she read. Mom read me lots of books. I learned a lot from mom creating lessons everywhere we went. Probably the biggest way I learned was through songs. I love music. My preschool teachers sang to me to get me to talk. I would feel me learning to rock to the beat and practice seeing the lyrics in my head. At church I learned to read the lyrics of worship songs.

I learned from my therapies somewhat. In ABA (Applied Behavioral Analysis) I learned to make the most of a babyish education by memorizing writings I saw on signs or books in the classroom. ABA taught me to be malleable to get food. Learning was not challenging or fun. I did not need the repetition. Once I learn something, I want to learn something new and interesting. ABA had me repeating the same goals for years.

My favorite therapy before RPM was RDI (Relationship Development Intervention). I liked making my body useful by helping around the house doing chores like laundry, dishes, and lots of other chores. I also liked playing with my family.


RPM is by far the best thing I learned. I am now able to attend regular school. I love it. Meaningful communication allows me to show my intelligence and converse with other people.

Philip




Monday, May 2, 2016

RPM Has Given Me a Voice

Video Blog by Christopher Finnes




Here is a short video message from Christopher Finnes in the UK for parents who are considering RPM (Rapid Prompting Method) for their child. Chris is aged 17 and is home schooled. He began RPM with Soma in 2011 and continues to work on his independant pointing and motor skills everyday. He is not yet able to independently type on a keyboard/Ipad but this is his long-term goal.  

His mum Sue says, "This has been a long journey for us, with many ups and downs, but I have been so inspired by what Chris has achieved using RPM that I felt I could not just keep this to myself. I know that there are thousands of children like my son- whose intelligence is being totally under-estimated, and who are judged by their outward behaviours. Lisa is doing a great job here sharing the writings of many of these children. There are not many RPM teachers worldwide so I decided I wanted specifically to help people to learn RPM, so I set up and moderate a very active international Facebook parent support group 'Unlocking Voices- Using RPM'  and also a not-for-profit company in the UK. My objective is to empower parents to learn how to use RPM with their children and so unlock their unheard voices.'

Sue and Christopher