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.
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.
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.